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Addressing Social Needs in Health Care Settings: Evidence, Challenges, and Opportunities for Public Health

Matthew w. kreuter.

The Brown School, Washington University in St. Louis

Tess Thompson

Amy mcqueen.

School of Medicine and The Brown School, Washington University in St. Louis

Rachel Garg

There has been an explosion of interest in addressing social needs in healthcare settings. Some efforts, such as screening patients for social needs and connecting them to needed social services, are already in widespread practice. These and other major investments from the healthcare sector hint at the potential for new multi-sector collaborations to address social determinants of health and individual social needs. This paper discusses the rapidly growing body of research describing the links between social needs and health and the impact of social needs interventions on health improvement, utilization and costs. We also identify gaps in the knowledge base and implementation challenges to be overcome. We conclude that complementary partnerships among the healthcare, public health and social services sectors can build upon current momentum to strengthen social safety net policies, modernize social services, and reshape resource allocation to address social determinants of health.

Introduction

Efforts to address social determinants of health (SDOH), long a priority for public health professionals ( 55 ), have been re-energized by recent attention and investment from the healthcare sector, spurred by a range of opportunities, initiatives and incentives, including the Affordable Care Act ( 102 ). This paper reviews the rich and rapidly growing body of research driving the efforts to address SDOH in clinical and community settings, and identifies key gaps and promising future directions for new scientific approaches to addressing social needs in health care.

The World Health Organization’s (WHO) oft-cited definition of SDOH includes political, social and economic forces that affect health by shaping the conditions in which people live ( 112 ). These determinants are usually viewed as system- and policy-level influences that affect everyone in a society and can either drive or reduce inequities in housing, education, jobs, pay and other social institutions and opportunities. At a person-level, the downstream consequences of SDOH for people who have been systematically disadvantaged include unmet social needs, such as unstable, unaffordable and/or low-quality housing, food insecurity, unemployment, lack of quality, affordable child care, or needing utility payment assistance.

The WHO’s landmark “Closing the Gap” report (2008)( 112 ) outlined three broad actions to address social determinants of health and achieve health equity: (1) improve daily living conditions; (2) tackle inequitable distribution of power, money and resources; and (3) measure and understand SDOH and assess the impact of action. The report’s conceptual framework ( 97 ) casts healthcare systems as an intermediary determinant, and suggests that through intersectoral actions like food and transportation assistance, healthcare can help address inequities in “material circumstances” such as housing, financial means to buy food and clothing, and neighborhood conditions and safety.

The healthcare sector’s recent involvement in SDOH has followed the WHO conceptual model and recommended actions fairly closely: assuming responsibility for measuring the problem (e.g., screening patients for social needs), assessing the impact of action (e.g., intervening on social needs and tracking outcomes), and focusing on deprivation in areas of material circumstances (as opposed to more upstream determinants like laws and policies). Castrucci and Auerbach (2019) correctly argue that these person-level experiences such as food and housing insecurity are really individual social needs , not SDOH ( 25 ). Although sometimes still referred to as SDOH by healthcare systems and in research ( 4 ), the term “social needs” is increasingly being used as shorthand for unmet material needs experienced by individuals.

The momentum to address social needs in health care settings is now visible in several routine practices. Recent national surveys of Medicaid managed care plans, hospitals and health systems show that in particular, two individual-level approaches – screening for social needs and making referrals to social services – are already in widespread practice ( 6 , 67 ). However, not all healthcare organizations have a formal process for screening and referral ( 67 ) and rates of uptake appear to be lower among healthcare providers in low-resource settings ( 82 ). The growing interest and investment in screening and referral for social needs has already spawned dozens of new technology platforms designed to facilitate the process of addressing social needs ( 23 ).

Many larger health systems have also invested in community-level and structural solutions. According to one study of 57 health systems, $1.6 billion was spent from 2017-2019 on housing interventions alone, including construction of affordable housing for homeless patients and those with high use of healthcare, helping employees purchase homes in neighborhoods targeted for revitalization, and eviction prevention programs ( 51 ). Although these tended to be pilot projects undertaken by larger health systems in partnership with other community organizations (and generally not represented in the scientific research literature), they are nonetheless major investments that hint at the potential for multi-sector collaborations to address these needs.

At present, however, such partnerships may be the exception: only 30% of hospitals and health systems in a national survey reported having fully-functional formal partnerships with community-based social needs providers, and 70% did not have dedicated funds to address social needs for all their target populations ( 67 ). Moreover, many health systems likely lack community-level social needs data to inform investments of this scope. Studies show that SDOH information is the least developed component of the Community Health Needs Assessments that are required of all 501(c)(3) organizations that operate hospitals ( 45 , 83 , 101 ).

The scientific literature on healthcare efforts to address SDOH is overwhelmingly skewed towards research on individual social needs, which is the focus of this paper. With 12 new studies of social needs interventions published every month ( 32 ), special supplements of leading journals dedicated to social needs research ( 40 , 110 ), and a growing number of evidence reviews on the subject ( 9 , 42 , 70 , 96 , 104 ), it is important that public health professionals understand this research and practice, its complementarity with public health efforts to address SDOH, and the opportunities it provides for partnership to improve population health and reduce disparities.

Drawing on this growing body of research, we describe the social needs experiences of diverse populations, the effects of social needs on health, and the impact of interventions on social needs and health improvement, utilization and costs. We conclude by identifying gaps in the knowledge base and implementation challenges to be overcome, and we suggest future directions for a science of social needs.

Assessing social needs

Although there is strong interest in community-level indicators, social needs are most commonly measured among individuals, using self-report. Healthcare organizations have a long history of screening for specific concerns (e.g., interpersonal safety) in specific clinical populations (e.g., pregnant women, seniors, pediatric patients) or settings (e.g., emergency departments) ( 5 ). Today’s social needs screeners are more multidimensional and include a range of screening tools ( 39 , 49 , 77 , 78 ) that vary in the total number of questions asked (e.g., 2-23), the time interval assessed (e.g., needs experienced in the past 12 months, current needs, anticipated need in the next month), whether needs are assessed for the respondent only or all members of the household, and the different sets of needs assessed.

In 2015, the Institute of Medicine recommended 11 key measures including race/ethnicity, education, financial strain, stress, depression, interpersonal safety, tobacco use, physical activity, and social connections ( 2 , 54 ). A Centers for Medicare and Medicaid Services (CMS) measure covers five domains – housing, food, transportation, utilities and safety/abuse – using 10 items ( 15 ). The American Academy of Family Physicians (AAFP) added to the CMS measure questions assessing education, employment status, financial insecurity and childcare needs ( 78 ). The Health Leads screening tool also assesses whether any of their social needs were urgent, and whether they needed help reading hospital materials ( 49 ). The PRAPARE tool adds items assessing incarceration history in the past year, stress level, and frequency of feeling socially connected ( 77 ).

Across these and other social needs screening tools, the most commonly included items assess needs related to food, utilities, housing, transportation, and personal safety. Within these multi-dimensional domains, screening tends to focus on aspects of the need that align with priorities of the healthcare organization or its perceived locus of influence. For example, screening items are more likely to assess housing stability than housing quality, even though both can have a great impact on people’s lives and health. Most screening tools do not include an open-ended question about other social needs patients may want to report that were not already addressed, which could improve the patient-centeredness of screening tools and elicit additional needs.

In addition to assessing social needs, the AAFP and Health Leads screeners also assess whether a respondent wants assistance addressing a social need. Some research suggests many may not ( 28 ). For example, a multi-site survey of 969 adult patients and caregivers of pediatric patients across nine states found that screening for social needs in healthcare settings was widely viewed as appropriate ( 29 ), but qualitative interviews with a subset of respondents revealed that not all wanted help from healthcare teams addressing social needs ( 22 ). Interviews showed that patients wanted their healthcare providers to be aware of their social needs, but did not expect them to resolve the needs; some even felt it was outside the scope of medicine to do so. In related findings, only 40-60% of people who report an unmet need agree to participate in navigation or other social needs programs ( 11 , 39 , 82 , 92 ).

Some social needs screeners include items that identify non-modifiable factors that could influence the types of social need assistance available to a person. For example, incarceration history or veteran status are not social needs, but could affect a person’s eligibility for services to address social needs ( 3 , 77 ). Use of such items and treatment of the resulting data should be carefully considered to avoid unintended consequences. For example, a history of incarceration might bias the treatment a patient receives, and remain in their electronic medical record long-term.

Although most social needs screening tools in widespread use were designed for adult patients, many screeners have also been developed for and/or administered to parents of pediatric patients ( 74 , 81 ). A recent review identified 11 different social needs measures for pediatric patients, most of which addressed social needs in the broader family context ( 96 ).

There is considerable variability in the wording, response format and time frame assessed in different social needs screening items, as well as in the procedures for administering them. These differences across studies make it difficult to directly compare results ( 50 ). In some screening tools, a single item assesses multiple needs (e.g., “How likely is it that you will have enough money for food, rent and clothing in the next 6 months?”), making it difficult to determine exactly which needs are unmet. Other questions require respondents to connect in causal fashion a social need to a health outcome (e.g., “Within the past 12 months, I couldn’t afford to eat balanced or healthy meals”) ( 94 ). These examples also illustrate the variability in time frame considered for each social need exposure; some are prospective while others are retrospective, and the relevant time period can range from a day or week to a year ( 15 ).

There is no consensus on how or how often patients should be screened for social needs. This includes determining which patients should be screened, in which settings, and by whom. Currently, social needs screening is administered in diverse healthcare contexts (e.g., community health centers, emergency departments, inpatient services), with different populations (e.g., pediatrics, those with chronic disease, low-income patients), using different modalities (e.g., verbal, paper, tablet computer), and implemented by a range of interviewers (e.g., doctors, nurses, social workers, community health workers, volunteers), and during different points in a clinical encounter (e.g., waiting room, exam room, post-visit). Some have cautioned that selective screening – assessing social needs only in certain patient populations, based on perceptions or data on place of residence, race or ethnicity, or perceived education – could erode patient trust and exacerbate stigma, discrimination, and health disparities ( 36 ). Screening all patients for social needs would reduce this risk ( 71 ).

Prevalence of social needs

Unmet social needs are widespread in marginalized populations. Studies assessing the prevalence of social needs have relied mostly on self-report from screening questions, though some have constructed social needs indicators based on administrative data ( 58 ) or tracked requests to community helplines (30; N. Verdecias, R. Garg, J. Steensma, A. McQueen, R. Greer, M.W. Kreuter, manuscript in review). Studies frequently report the prevalence of individual social needs as well as the total and/or mean number social needs experienced, including the percent with 0, 1, or 2+ social needs. Table 1 reports findings from 15 studies to illustrate the prevalence of selected social needs in different populations and healthcare settings.

Sample of studies that report prevalence of social needs.

NA = data not available (i.e., not reported)

ND = no data collected

Studies find that participants frequently have 2 or more social needs, even though most assess a relatively small number of needs ( 38 , 41 , 62 , 64 , 86 ). Studies that screen a broader patient population tend to find fewer social needs per person ( 50 ). In Table 1 , findings are grouped into two types of social need studies. Studies in clinical settings assess social needs during healthcare visits. This screening usually occurs in person but sometimes through other modalities such as online surveys ( 48 ). Studies in a community or non-clinical setting assesses social needs either independently from healthcare, among individuals who are seeking assistance through social service helplines, or through phone outreach to members of a healthcare plan or system.

Social needs related to housing, food, childcare and general financial strain are among the most common social needs experienced. In Table 1 , 5-43% of participants screened in clinical settings had housing stability needs. Other housing related needs, including low-quality housing or limited space in the home, are often more prevalent than housing instability in studies that assess both ( 50 , 64 , 92 , 105 ). However, many studies report housing stability alone and do not assess quality separately ( 11 , 16 , 27 , 37 , 38 , 79 , 80 , 88 , 95 , 99 ).

Food insecurity, operationally defined in various studies as eating less, skipping meals, not having enough food for one’s family, or running out of food before having money or food stamps to buy more, is one of the most highly prevalent needs ( 11 , 27 , 41 , 48 , 79 , 88 , 95 ). In Table 1 , 6-41% of participants screened in clinical settings had food-related needs.

Among adults with young children, the need to find quality and/or affordable childcare is highly prevalent ( 37 , 38 , 62 , 86 ), although it often appears less so in general population screening when the denominator includes those without young children ( 27 , 50 , 80 , 92 ). In Table 1 , 29-50% of adults with young children reported childcare needs while only 2-3% reported childcare needs in general population studies that also included those without young children.

General financial strain is one of the most commonly identified social needs across studies in many different settings, although screening questions for financial strain vary widely, making comparisons of prevalence across groups difficult. For example, Kreuter et al found that not having enough money for unexpected expenses was the most prevalent social need (47-89%) in four independent studies ( 62 ). Other studies also found that financial strain was the most common social need, either in the context of paying for health care ( 11 , 16 , 99 ) or general employment and income concerns ( 27 , 37 , 38 , 58 ).

These rates of housing, food, childcare and financial needs among low-income samples are generally higher than population-wide estimates from public health surveillance efforts. In the U.S., slightly more than 10% of households experience food insecurity at some time each year ( 106 ). Around 7% of U.S. households are cost burdened and around 0.2% of Americans are homeless ( 108 ).

The most prevalent needs can vary widely by study setting. Among helpline callers, for example, social needs related to utility bill payment and transportation are more common than they are among populations screened in healthcare settings ( 30 , 62 , 64 ). This may be because screening in healthcare settings often assesses transportation needs in the specific context of healthcare access, and because those who arrive for a healthcare visit have overcome, at least temporarily, whatever transportation need they may have.

Studies in clinical and community settings have identified several common correlates of having more unmet social needs, including lower income, less education, and unemployment ( 11 , 47 , 62 , 64 , 95 , 105 ). For other demographic characteristics, however, findings are mixed. Some studies have found that older participants report more social needs ( 62 ), while other studies have found that younger participants have more social needs ( 87 ). There have also been conflicting findings about the association between gender and social needs ( 11 , 50 , 62 ).

Although national surveillance data suggest that members of racial and ethnic minority groups are at increased risk for food insecurity and housing instability ( 107 , 108 , 109 ), studies of social needs have not found a consistent association. One study among helpline callers found that White participants were more likely to have social needs ( 62 ), while other studies have found no association between race and social needs ( 47 , 62 , 95 ) or that Black or Hispanic participants are more likely to have social needs ( 11 , 50 , 62 , 87 ). The conflicting findings may be explained, at least in part, by differences in study samples and/or measures.

The link between social needs and health

Both in the U.S. and globally, broad social determinants such as income and education are associated with health outcomes including chronic disease and mortality ( 1 , 20 , 21 , 68 , 69 , 98 ). There is also a growing body of research linking individual social needs to a range of health outcomes from behaviors to mortality to health care utilization and costs ( 76 ). For example, material need has been associated with lesser access to and use of treatment and prevention services, later diagnosis and resolution, and greater hospitalization, length of stay, readmission, complications, and mortality ( 60 ). These associations may be mediated by lack of health insurance ( 111 ). Because much of this research is based upon cross-sectional data, causality often cannot be established and could be bi-directional or reversed ( 72 ). For example, longitudinal studies have shown basic needs predict depressive symptoms ( 18 ), but also vice versa ( 52 ).

Many studies have examined the relationship between a single social need and a particular set of health outcomes. Most commonly, this research has focused on social needs related to food and housing. Food insecurity is associated with negative health consequences across the life span including obesity, stunting, wasting, and cardiometabolic disease ( 24 ). It has been associated with sleep problems ( 44 ), inflammation ( 43 ), poor diabetes control among diabetic patients ( 12 ), and poor health among children ( 7 , 89 ). Among the general U.S. population, adults reporting food insecurity have higher subsequent health care expenditures ( 10 ), whereas low-income adults who participate in the Supplemental Nutrition Assistance Program have lower health care expenditures compared to those who do not ( 13 ).

Housing insecurity and homelessness are also associated with negative health outcomes among adults ( 66 , 100 ) and children ( 26 ). Low-income adults that receive rent assistance have three-fold lower odds of rating their health as “fair” or “poor” compared to peers on a waitlist for rest assistance ( 59 ). Among Canadian adults with HIV, having at least one unmet need (for food, clothing, or housing) was associated with lower physical and mental health quality of life ( 95 ).

There is strong evidence for a dose-response relationship between social needs and health. Studies show that increased social needs are associated with worse physical, mental and self-rated health, more chronic conditions, depressive symptoms, and higher perceived stress ( 11 , 16 , 62 , 64 , 95 , 105 ). Among children, higher levels of unmet needs are associated with lower levels of child wellness ( 34 ).

Social needs are also associated with a range of health-related behaviors including smoking, illicit drug use, eating fewer fruits and vegetables, getting less exercise, getting less sleep, and not seeking preventive healthcare ( 16 , 58 , 62 , 64 , 84 , 105 ). For many of these behaviors, the association with social needs also follows a dose-response gradient.

Although most research linking social needs with health behaviors and health outcomes has been cross-sectional, longitudinal studies have also established that social needs predict negative health outcomes. In community-dwelling adults, higher levels of unmet social needs were associated with increases in depressive symptoms ( 18 ), increases in problems with physical functioning ( 90 ) and higher mortality ( 17 ).

This accumulation of evidence has led the National Academies to conclude, “The consistent and compelling evidence on how social determinants shape health has led to a growing recognition throughout the heath care sector that improving health and reducing health disparities is likely to depend—at least in part—on improving social conditions and decreasing social vulnerability” ( 76 ; p. 27).

More evidence is needed about the mechanisms through which unmet needs affect health. Several conceptual models and frameworks have been proposed to explain the indirect effects of addressing social needs on health outcomes: through reduced stress and competing demands for resources and improved adherence to medication and physician visits ( 46 , 75 ), and through improved health behaviors, physiologic functioning, and psychosocial factors ( 8 , 9 , 21 , 72 , 98 ).

Social needs interventions

Some social needs interventions focus on addressing a particular need, while others are increasingly addressing a range of needs ( 9 , 35 , 42 ). Among interventions addressing multiple social needs identified through screening, the simplest approaches compile and distribute social needs resource guides, often with little follow up or evaluation. More comprehensive “linkage” interventions involve systematic approaches to screening for social needs followed by social prescriptions or referrals for specific resources available from independent or partner community organizations (e.g., food bank, YMCA) or a co-located service provider (e.g., medical-legal partnerships).

Given eligibility requirements and limited resources at many social service provider agencies, however, there is no guarantee that linking patients with community programs will resolve the patient’s social needs. Although some patients may be able to resolve their unmet need independently using a resource information booklet or following a verbal or written referral for an assistance program, others will be more successful with personal help from someone like a case manager or social needs navigator ( 72 ) who can advise them on the documentation needed to meet eligibility criteria, help them connect with the agency, and assist them with applications.

Social needs navigators are often affiliated with a healthcare organization or community agency (e.g., social workers, nurses, community health workers, volunteers) and provide ongoing support and follow up in person and/or by phone. In many healthcare organizations, patients with high acuity or utilization are offered case management or navigation services to address health and social needs (i.e., hotspotting ( 33 )), but it is less common for navigation programs to be made available universally to a patient or member population, without regard to individual differences in health risk profiles.

Several reviews of the literature have identified and summarized interventions designed to address social needs. Most studies report the prevalence of needs and what percent of needs were resolved through referrals over a particular time period ( 19 , 38 ); fewer report health outcomes or cost savings. Results have varied based on which needs were addressed. In one review, intervention studies addressing housing needs found effects on health outcomes, costs, or both, whereas studies of nutrition, income, or care coordination supports were more sparse and had mixed effects ( 104 ). Several interventions have focused on housing and childhood asthma triggers; some reported reductions in the use of urgent health care services and increases in symptom-free days and quality of life ( 9 ). Incorporating social work interventions within primary care has shown promising effects on subjective health measures, self-management of chronic conditions, and reduced psychosocial morbidity and barriers to care ( 70 ).

There is also evidence for benefits of social needs navigator programs that address multiple needs. For example, one study determined that having a university-affiliated navigator for 3 months led to greater improvement in parents’ evaluation of overall child health than a printed community resource guide ( 41 ). Another found that having a community health worker provide navigation for 6 months was more effective and cost-effective in reducing hospitalization and costs compared with standard care ( 56 , 57 ). A comparative-effectiveness study showed that delivering navigation via a clinic setting vs. a community setting did not differentially affect psychosocial outcomes ( 85 ). An evaluation of Health Leads programs across three sites found that patients who screened positive for unmet social needs and agreed to participate in navigation showed improvements in blood pressure and cholesterol (but not HbA1c) over time compared to those who declined participation ( 11 ). Providing a medical-legal intervention to parents with newborns increased access to supports (e.g., food, utility assistance, public assistance), increased rates of immunization and preventive care, and decreased emergency department visits ( 93 ).

Although individual studies provide promising results for navigation interventions, reviews of the literature identify multiple areas for methodological improvement to strengthen our knowledge of what works ( 9 , 42 , 104 ). Most trials to-date have used social needs screening tools with unknown reliability and validity and focused on process outcomes. Few involved large samples or included cost-effectiveness analysis, some lacked appropriate comparison groups to provide rigorous results that are generalizable to broad patient populations, and long-term follow-up varied. Additionally, many trials involve pre-post designs among high-risk or high-utilizing patients; thus results may be confounded by regression to the mean, as seems to be the case in hotspotting interventions ( 33 ). It is also important to evaluate whether interventions to reduce healthcare utilization (less ED use) are beneficial and not potentially harmful (e.g., having unintended consequences such as reducing preventive care) ( 14 , 92 ).

In addition to the need for more rigorous studies evaluating whether social needs interventions are effective, there is an equally important need for research seeking to explain how these interventions influence health and social needs outcomes. Fichtenberg and colleagues (2019) suggest four potential pathways: increasing patient access to resources, reducing patient stress, helping healthcare providers give better care, and reducing provider burnout ( 32 ). The latter two of these are provider-related, and have received less attention in research conducted to date. It’s possible that knowing a patient’s social needs could alter in a quality-enhancing way a provider’s approach to medication management, behavior change recommendations, or other patient interactions, or that knowing your healthcare system has an infrastructure and resources to assist with social needs reduces providers’ stress and worry when treating patients with unmet social needs. Studies exploring these and other mechanisms of effect will advance the science and practice of addressing social needs.

Challenges and next steps

A key assumption underlying the strategy to address social needs through screening and referral interventions is that social service agencies have sufficient capacity to address the demand in their communities. A few longitudinal studies have tracked the outcomes of social needs referrals and found that overall, only about one-third of those receiving a referral end up getting assistance from the referral agency ( 19 , 91 ). But the capacity of social service agencies can vary widely by community and type of social need ( 86 ), with community capacity higher in urban versus rural areas, for example, or higher for responding to food-related needs compared to housing needs ( 63 ). Screening and referral interventions may not be suitable for social needs that cannot be reliably addressed due to limited capacity of the local social service system.

Our current knowledge of how a person’s social needs change over time is limited. In both research and practice to date, screening or assessment of social needs is at best sporadic, and when it is assessed at multiple time points there are often long gaps between assessments. This is not a problem if social needs are relatively stable, but there is no evidence supporting that. Rather, studies examining the financial needs of low-income individuals suggest that they fluctuate frequently and often dramatically ( 73 , 103 ). Thus changing needs over time cannot be resolved by a one-time intervention and may perhaps be more effectively addressed by longer-term interventions such as ongoing navigation. Understanding the patterns, timing and sequences in which some social needs rise and others fall could also help social needs interventions shift from being reactive to proactive, and could even help identify issues that require addressing underlying causes a population level. Longitudinal research measuring dynamic needs and their effects on each other and on health is needed.

Current screening and referral interventions tend to treat each social need a person reports as independent. In other words, if a person has food and transportation needs, they would likely receive one referral for food assistance and another for transportation services. While having the advantage of being simple and straightforward, this approach ignores possible links among different social needs and may use limited community resources inefficiently. As an example, needing utility payment assistance and money for daily necessities like food, clothing and shelter are highly correlated across multiple social needs studies ( r s = .49 to .71) ( 62 ). When planning social needs interventions, it’s possible that addressing one need – say transportation, by providing a needed car repair or bus pass – would leave enough money in the person’s budget to help meet food needs or increase their ability to get to food stores. Future work should identify and test promising alternative strategies that solve individual needs while preserving limited community resources.

It is also plausible that certain social needs may cluster in certain population sub-groups ( 61 ). For example, a proof-of-concept analysis showed that compared to others in a low-income sample, women with children were more likely to report not having enough space in their home and needing help with utility bills, men under 50 were more likely to report being physically threatened and needing a place to stay, and adults 50 and older in fair or poor health were more likely to need food and transportation ( 62 ). Hudson and colleagues argue that Black men may experience distinct stressors over the life course and may benefit from social needs interventions that address their particular social, legal, or economic needs (e.g., getting disability benefits or clearing criminal and credit histories) ( 53 ). If certain combinations of social needs occur more commonly in distinct population sub-groups, healthcare and other organizations could develop integrated packages of interventions supported by coalitions of community partners to increase effectiveness. We found no published studies comparing effects of one-size-fits-all social needs interventions with interventions that are highly targeted for specific population sub-groups with similar social needs experiences.

Understanding the complex and dynamic relationships among social needs could also make screening for social needs more efficient. For example, compared to those who do not express transportation needs when calling a community helpline, individuals who do express transportation needs have three times greater odds of also having food needs and twice the odds of needing health insurance or a regular doctor, even though they had not sought help for food or healthcare needs from the helpline (N. Verdecias, R. Garg, J. Steensma, A. McQueen, R. Greer, M.W. Kreuter, manuscript in review). Identifying such interdependencies could lead to adaptive social needs assessment tools that are at once shorter and more informative.

All of these considerations – community capacity, temporal patterns and clusters of social needs, common social needs experiences of different population sub-groups, and smart social needs screening tools that are adaptive and conditional – have practical implications for delivering social needs interventions. They help answer key questions for advancing the field, including which social needs to target and when, which individuals might benefit most from which interventions, and which strategies can identify and address social needs most efficiently, cost-effectively, and sustainably ( 32 ).

At the same time, even if social needs interventions in healthcare evolve and are increasingly guided by a robust science of social needs, they should be understood in a broader context and optimized through complementary partnerships and policies. Not all people have health insurance or access to healthcare. Integration of healthcare and social services provides a useful example of the range of collaborative possibilities. On a continuum of degrees of integration, screening and referral interventions that send patients from a health plan to certain social service agencies would rank low compared to community-wide collaborations that reach and benefit all people, not just health plan members ( 31 ). In fact, different health plans that implement similar social needs referral programs may ultimately compete with each other for the same social services for their own members.

Addressing people’s social needs in a way that works and lasts will be difficult and likely expensive. Results may be modest and the time horizon for seeing health benefits long, or perhaps never if underlying causes are not addressed upstream. There is a real risk that the healthcare sector could lose interest along the way, decide that the investment is not worth it, or conclude that others are better suited to address social needs. That would be a tremendous missed opportunity. Sustaining the attention, interest and investment of the health care sector must be a high priority. Public health professionals and organizations are needed to help build, lead, or participate with healthcare organizations in cross-sector and multi-level community efforts to improve population health and reduce disparities by addressing SDOH and social needs.

Efforts at all levels of the continuum will work better if there are investments in and modernization of the social service sector, including social safety net policies and resource allocation to sustain them ( 40 ). As health care interventions to address social needs continue to be developed, refined, and tested, it is crucial for public health professionals to also strive to shape the upstream SDOH that drive both health disparities and the inequitable distribution of unmet social needs ( 65 ).

Contributor Information

Matthew W. Kreuter, The Brown School, Washington University in St. Louis.

Tess Thompson, The Brown School, Washington University in St. Louis.

Amy McQueen, School of Medicine and The Brown School, Washington University in St. Louis.

Rachel Garg, The Brown School, Washington University in St. Louis.

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• Published: 06 May 2021

Co-producing knowledge in health and social care research: reflections on the challenges and ways to enable more equal relationships

• Michelle Farr   ORCID: orcid.org/0000-0001-8773-846X 1 , 2 ,
• Philippa Davies   ORCID: orcid.org/0000-0002-2678-7126 1 , 2 ,
• Heidi Andrews 1 , 2 ,
• Darren Bagnall 1 , 2 ,
• Emer Brangan   ORCID: orcid.org/0000-0002-1288-0960 1 , 2 , 3 &
• Rosemary Davies   ORCID: orcid.org/0000-0001-9969-1902 1 , 4  

Humanities and Social Sciences Communications volume  8 , Article number:  105 ( 2021 ) Cite this article

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Researchers are increasingly encouraged to co-produce research, involving members of the public, service users, policy makers and practitioners in more equal relationships throughout a research project. The sharing of power is often highlighted as a key principle when co-producing research. However, health and social care research, as with many other academic disciplines, is carried out within embedded hierarchies and structural inequalities in universities, public service institutions, and research funding systems—as well as in society more broadly. This poses significant challenges to ambitions for co-production. This article explores the difficulties that are faced when trying to put ideal co-production principles into practice. A reflective account is provided of an interdisciplinary project that aimed to better understand how to reduce power differentials within co-produced research. The project facilitated five workshops, involving researchers from different disciplines, health, social care and community development staff and public contributors, who all had experience in co-production within research. In the workshops, people discussed how they had attempted to enable more equal relationships and shared ideas that supported more effective and equitable co-produced research. Shared interdisciplinary learning helped the project team to iteratively develop a training course, a map of resources and reflective questions to support co-produced research. The gap between co-production principles and practice is challenging. The article examines the constraints that exist when trying to share power, informed by multidisciplinary theories of power. To bring co-production principles into practice, changes are needed within research practices, cultures and structures; in understandings of what knowledge is and how different forms of knowledge are valued. The article outlines challenges and tensions when co-producing research and describes potential ideas and resources that may help to put co-production principles into practice. We highlight that trying to maintain all principles of co-production within the real-world of structural inequalities and uneven distribution of resources is a constant challenge, often remaining for now in the realm of aspiration.

Introduction

Co-production of research—where researchers, practitioners and members of the public collaborate to develop research together—is promoted as a way to strengthen public involvement, and create and implement more relevant and applicable knowledge, that is used in practice (Staniszewska et al., 2018 ; Hickey et al., 2018 ). Academic disciplines and funding bodies define the concept of co-production differently, using divergent methods and theories (Facer and Enright, 2016 ), with subsequent debate about what co-production is and who may be doing it ‘properly’. We use the INVOLVE definition and principles of co-producing research (Box  1 ) (Hickey et al., 2018 ), which includes the often-agreed principle to share power more equally between partners. However, the extent to which this is achievable within structural inequalities and institutional hierarchies is debatable (Flinders et al., 2016 ).

This commentary article reflects on a project that aimed to:

share interdisciplinary learning about co-produced research

understand how to enable more equal relationships with co-production partners, particularly public contributors—defined as members of the public including patients, potential patients, carers and people who use health and social care services (in contrast to people who have a professional role in health and social care services or research) (NIHR CED, 2020 ).

develop training and resources to support co-produced research.

The project was developed by a team of three applied health researchers, a public involvement lead and three public contributors (with in-depth experiences of co-produced research) undertaken within the National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) West, an organisation that develops applied health and social care research. Through facilitating five project workshops, we engaged with eleven researchers from five disciplines; six practitioners; and eleven public contributors with involvement and co-produced research experiences. We shared practical lessons across disciplinary boundaries about how to do co-produced research more equitably (Oliver and Boaz, 2019 ). These workshops helped the project team progressively and iteratively develop a training course, a map of resources (Farr et al., 2020 ) and reflective questions (Davies et al., 2020 ), freely available to support co-produced research.

This article explores the extent to which these multidisciplinary lessons can help us transform knowledge production in more equitable ways, outlining our learning from this project. First, we overview some conceptual issues with the use of the word ‘co-production’. We then discuss key matters raised in our interdisciplinary workshops: ‘Who is involved and when in co-produced research?’; ‘Power dynamics within health and social care research’; and ‘Communication and relationships’. We conclude by highlighting that bringing co-production principles into the real research world is fraught with difficult and messy compromises. Researchers (often lower in the academic hierarchy) may be caught up in battling systems and policies to enable co-production to happen, especially where they attempt to address issues of power and control within the research process.

Box 1: INVOLVE a Definitions and principles of co-produced research (Hickey et al., 2018 )

‘ Co-producing a research project is an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge ’ (p. 4).

Principles include:

Sharing power where research is owned by everyone and people are working together in more equal relationships

Including all perspectives and skills to ensure that everyone who wants to make a contribution can do so, with diversity, inclusiveness and accessibility being key

Respecting and valuing the knowledge of everyone , with everyone being of equal importance, and benefitting from the collaboration

Reciprocity and mutuality , building and maintaining relationships and sharing learning

Understanding each other with clarity over people’s roles and responsibilities.

a INVOLVE supported active public involvement in NHS, public health and social care research, with a new NIHR Centre for Engagement and Dissemination (CED) launched in April 2020.

The concept of co-production

The NVOLVE co-production principles (Box  1 ) (Hickey et al., 2018 ) build on public policy co-production literature (Boyle and Harris, 2009 ; Staniszewska et al., 2018 ), which explores how service users can take an active role within the provision of public services (Brudney and England, 1983 ; Ostrom, 1996 ). A key premise is that service users have a fundamental role in producing services and outcomes that are important to them (Brandsen and Honingh, 2016 ). While in our project we particularly wanted to focus on ways of sharing power with service users and public contributors, defining who is involved in co-produced research varies across disciplines. The active involvement of service users/members of the public has sometimes been lost in research that is labelled as co-produced. UK funding councils such as the Economic and Social Research Council (ESRC) talk of co-produced research as developed between academic and non-academic organisations or communities (Campbell and Vanderhoven, 2016 ; ESRC, 2019 ). In health services research, authors have used the non-specific language of ‘stakeholders’ (Oliver et al., 2019 ). Sometimes the main research co-production partner has been practitioners (Heaton et al., 2016 ) and service users have been relegated to ‘context’ (Marshall et al., 2018 ), rather than being active agents and partners. This obfuscation of the role of service users/ members of the public in co-production is detrimental to the drive for inclusivity, democratisation and equity within co-produced research, which addresses the needs of service users/ marginalised citizens (Williams et al., 2020 ), overlooking the long political history of demands from service users to be more democratically involved in health and social care services and research (Beresford, 2019 ).

In our project, we particularly wanted to focus on how to equalise relationships with service users and public contributors (defined above) within co-produced research. The egalitarian and democratic principles of co-production means that service users, who may have been marginalised and are on the receiving end of professional ‘expertise’, now become equal partners in research (Williams et al., 2020 ). Best practice in co-produced research remains contested, with a significant theory-practice gap (Lambert and Carr, 2018 ). We wanted to understand what practices and resources could help bring principles into practice, when we are working within a context of structural inequalities.

Who is involved and when in co-produced research?

INVOLVE states that co-production should ‘occur from the start to the end of the project’ (Hickey et al., 2018 ) (p. 4). The principle to ‘include all perspectives and skills—make sure the research team includes all those who can make a contribution’ (Hickey et al., 2018 ) (p. 4) can be highly aspirational.

In our interdisciplinary workshops we discussed how there is often a lack of funding to pay public contributors to help develop a funding application. Formative ideas about research priorities and design can often be made by researchers before other people are involved. Our workshop discussions noted that involving all stakeholders who potentially have an interest in a project could be a very large and diverse group. It would be difficult to involve everyone, and this could be in tension with the idea that smaller groups can work better together. There are usually practical constraints on team numbers, budgets to pay for public contributors’ time and project scale and size. A tension can exist between the number of people you can viably include, and the diversity of the group you are working with. More generally, workshop participants highlighted problematic issues of claims to representation, where people within a co-production group need to be aware that they don’t speak for everyone—not even everyone in a group they are there to ‘represent’—and there was a need to look for opportunities to draw other perspectives in.

Workshop discussions included that when public contributors join a project there is a need to support people to take on different roles, and for people to also have choice and work from their strengths, rather than assuming that everyone has to do everything. Some group members may feel they lack skills or expertise in particular areas, and so may need training, support and mentoring. There may also be assumptions about who is going to do what work, which may need to be explicitly discussed and agreed. Ensuring proper payment of public contributors is an essential element of co-production. If public contributors are going to collect research data, they need appropriate payment, contracts and to follow all research governance processes. Within UK National Health Service (NHS) research that may mean having Research Passports, Good Clinical Practice training and Disclosure and Barring Service checks, if they are working with vulnerable people or children. Not all these processes are designed for public contributors, they can be potentially problematic to navigate, and researchers may need to support public contributors through this process. Table  1 summarises some of the challenges around who is involved, and when in co-produced research, and potential practices and resources that may help.

Power dynamics within health and social care research

Theoretical perspectives on power.

Critical and interdisciplinary perspectives on power can help us understand how to facilitate more equitable partnerships within research and co-produced work (Farr, 2018 ; Oliver and Boaz, 2019 ). The first principle of co-production is to share power through ‘an equal and reciprocal relationship’ between professionals and people using services (Boyle and Harris, 2009 ) (p. 11). However, several authors highlight how co-production can be a rhetorical device to hide power and social inequities (Flinders et al., 2016 ; Thomas-Hughes, 2018 ). Using Lukes ( 2005 ) dimensions of power, Gaventa ( 2007 ) conceives that power can be visible (institutions, structures, resources, rules), hidden (agenda-setting, some voices more dominant within decision-making), or invisible (embedded in beliefs and language).

Focussing first on visible aspects, structural and resource issues can impinge on people’s ability to co-produce, for example funders’ top-down control of research priorities and funding streams, alongside NHS and government political priorities. University research environments can be competitive, ‘unkind and aggressive’, which can crowd out ‘collegiality and collaboration’ (WellcomeTrust, 2020 ), exactly the kind of principles that academics are being encouraged to adopt through co-production. Traditional research frameworks are ill-fitted to the challenges of transforming power and control that are needed for co-productive practice (Lambert and Carr, 2018 ). Power hierarchies are intrinsic to research processes, with people experiencing competing expectations (from public contributors and communities, co-researchers, colleagues and institutions) when working in this way (Lenette et al., 2019 ). How do researchers create co-production circles of equality, reciprocity and share power with public contributors, when often researchers themselves are on temporary contracts and subject to the pressures of publishing, funding, impact and self-promotion within ‘toxic’ (Wellcome Trust, 2020 ) competitive structures? Understanding who is involved and how in decision-making processes (hidden aspects of power) is essential to understand how power is exercised. However, political scientists have long ago illustrated that ‘even the most internally democratic small collectives cannot in fact achieve equality of power in their decisions’ (Mansbridge, 1996 , p. 54).

Scrutinising invisible aspects of power, power can be seen to operate through knowledge, social relations and the language we use (Foucault, 1977 ). The principle of respecting and valuing the knowledge of all (Hickey et al., 2018 ) can be challenging in a healthcare context where a knowledge hierarchy with traditional positivist epistemological assumptions values an ‘unbiased, objective’ position. Co-productive approaches can be grounded in critical theory (Bell and Pahl, 2018 ; Facer and Enright, 2016 ), as opposed to traditional scientific paradigms. The experiential contextualised and tacit knowledge of people who use services, and related qualitative and participatory action methods, can be valued less than knowledge derived from randomised controlled trials (RCTs). This increases the challenge of co-production, as the values and methods of health and social care research may align less with co-production principles. Indeed the very idea that co-production and the sharing of power can actually happen within mainstream University spaces has been contested, with Rose and Kalathil ( 2019 ) arguing that Eurocentric hierarchical institutions that privilege rationality and reason will never be coming from a place where different knowledges are valued equally.

Understanding power in practice

In our project it was difficult to maintain a focus on power relations in the face of a strong tendency to emphasise practicalities, highlighting the difficulties of bringing these issues into clearer focus. An analysis of power dynamics may be an important aspect of a sociological study, but not one considered of such importance within health and social care research.

Focussing first on visible, structural aspects of power, workshop participants discussed their experience that within research that is formally ‘owned’ by a University (i.e., the Principal Investigator (PI) legally responsible for the project is situated within a University) there are associated issues of accountability and formal responsibility for delivering a funded research project. This creates constraints where projects have to deliver what is described rather than what emerges from the co-production process. How a PI works to develop a collaborative leadership style is an under-researched area. Within our own project we all held some unspoken assumptions about leadership and ensuring progress toward our project objectives. Workshop participants highlighted that organisational systems may not support co-production (e.g., finance, human resources and funding systems) so researchers may have to be tenacious to advocate for system changes in order to achieve things, which can be frustrating and time-consuming. For these myriad reasons, realistic resourcing of researcher time for co-production is needed, and many researchers may still end up putting discretionary time into projects to make co-production a success. There are few tools to help researchers avoid or alleviate risks to themselves and their stakeholders, such risks including practical costs, personal and professional costs to researchers, and costs to stakeholders (Oliver et al., 2019 ).

In relation to decision-making, workshop participants noted that in a pragmatic sense, doing everything by committee and consensus can impede project progress, as no decisions can be made until everyone is present at meetings. Even if decisions are made with everyone present, the power dynamics between people does not necessarily ensure that decisions are shared and agreed by everyone. Within our own project, where we were trying to stick to the principles of co-production, we found that we often had discussions between paid staff members outside of team meetings where thinking was developed and decisions taken. If public contributors are without employment contracts and are not working alongside other staff, there is potential for them to be excluded from informal discussions and decisions in day-to-day tasks. In our workshops there were discussions about whether researchers needed to ‘get out of the way’ and ‘sit on their hands’ in order to make space for others. We discussed how to practically create space for diverse knowledge and skills to be shared and considered whether it is possible to identify shared interests or if there is always a political struggle for power.

Through our project, we reflected as a team how assumptions and practices of how we do healthcare research may be deeply embedded within academic cultures. This links with Foucault’s perspectives on power dynamics (Foucault, 1977 ), every act and assumption we make is imbued with power, which makes power particularly hard to observe, grasp, critique, challenge and transform. We all have subconscious beliefs and work within cultural assumptions, thus continual critical reflective practice, and constant attention to fluctuating power relations is needed (Farr, 2018 ; Bell and Pahl, 2018 ). In workshops, suggested ways to address cultural issues included harnessing the current trends for co-production and using this to start challenging engrained cultures and accepted ways of doing things. Current funder prioritisation of co-production can enable senior researcher support for co-production, as organisational leaders recognise the cultural capital of the word and practices of ‘co-production’. Raising awareness of NIHR and other policy commitments to co-production may be a useful influencing strategy to engage more senior staff, as organisational support can be crucial to facilitate co-production. However, there is always the risk of tokenism and rhetoric (Flinders et al., 2016 ; Thomas-Hughes, 2018 ).

We considered within our project that the relationships between personal experiential knowledge, practice-based knowledge of healthcare staff, and dominant healthcare research need to be better understood if we are to co-produce knowledge together. We reflected on whether the aim of co-production projects is to modify the knowledge hierarchy completely, or to bring in experiential expertise/lived experience to influence the knowledge production process so the knowledge produced is more practical/effective/implementable. This second, more limited aim of making evidence more co-productively, so that it is more useful in practice may be more achievable, whereas modifying the dominant knowledge hierarchy was beyond our scope and influence.

Communication and relationships

The above dimensions of power (Lukes, 2005 ) have been augmented and brought together into a broader theoretical framework (Haugaard, 2012 ), which also incorporates ‘power with’ (Arendt, 1970 ), where emancipatory power can be harnessed through our ‘capacity to act in concert’. Arendt’s work highlights how we can collectively use our power together in more empowering ways. This links with a key principle of co-production, reciprocity, where everyone benefits from working together.

Consideration of what different team members want from working together, and therefore what reciprocity means within a project is needed. We discussed in the interdisciplinary workshops how the kind of benefits wanted by public contributors might include developing skills, confidence and work experience, and meeting such expectations may not usually be considered as research aims. Through our project we saw how co-production is strongly reliant on good communication and relationships. Strong facilitation and chairing skills are needed within meetings, to encourage everyone to contribute and challenge unhelpful behaviours, e.g., using jargon, or one person speaking a lot to the exclusion of others. People in our workshops discussed how some public contributors might need additional support to get more involved, e.g., having pre-meetings to help people get to grips with some information and/or issues, or the provision of materials in different accessible formats. If a co-production project includes people with specific communication needs, the group may need additional time and skills to be able to offer ways of working that are suitable for all. The NIHR is encouraging researchers to involve communities and groups that are often excluded. This means more outreach work to go out and meet with people in the places that they find accessible and comfortable, which can include project meetings in community locations, which may require additional resources.

Developing relationships and trust between team members may take time and requires emotional work. In our workshops we discussed how if the public contributor role includes sharing personal experiences for the benefit of the project, then researchers may also need to drop the ‘professional’ mask and share more personally and expose their own vulnerabilities (Batalden, 2018 ) to support more equal relationships. The challenges of university structural hierarchies were also discussed, including how it was often the responsibility of more ‘junior’ (i.e., lower in the hierarchy) researchers, and often women, to do the relational work (Lenette et al., 2019 ). Senior researchers do not necessarily understand the implications of co-production, for example one person shared how their Principal Investigator assumed that having a public contributor on the team would increase capacity and speed work up, unappreciative of the extra time needed for support, training and communication, including at the weekends, when public contributors could be carrying out work. Meeting the support and learning needs of team members can be challenging, both for researchers and public contributors, as co-produced research may take researchers outside the skills and knowledge usually expected in their professional environment. Even when these needs within a co-production project are recognised, research funders may not understand the resource and capacity implications.

A key element of running a co-production project identified within our work was the ongoing need for time to reflect on group processes to support and maintain different ways of working. Finding time for reflection can be challenging alongside creating an environment where everyone can honestly reflect on what it’s like to be in the group. This requires strong facilitation skills, particularly if there are tensions and conflicts. Addressing communication and relationship challenges are key to developing and sustaining a sense of shared ownership, and we outline some helpful practices in Table  2 .

Reflections on our own attempts at co-production

The conception of our project came initially from conversations between a researcher and public involvement specialist with previous experience as a service user and user-controlled research, wanting to create a space to share interdisciplinary learning between everyone about co-production. It could be argued that as the generation of the idea did not include public members in this first discussion it was not truly co-produced. We acknowledged that there were gaps between the lessons our project produced, and how the project itself had been carried out. It was very challenging to implement all INVOLVE principles (Hickey et al. 2018 ), and we question the extent to which they can ever be fully realised within our current contexts. Practically, we found that we should have allocated more resources to payment of our public contributors to take on additional roles. A focus on relationships and reflection was hard to maintain in the face of a small group trying to deliver an ambitious project to time, alongside other competing commitments. However, in our own reflective discussions we acknowledged that a sense of ongoing commitment to the project from everyone felt key to our group process and successfully getting the project done. In writing this article we met together several times to plan and develop sections, tables and points we wanted to get across. However, the actual writing tended to fall to the academics and public involvement specialist, who had more of the technical knowledge of what was expected. Demands of time, the juggling of commitments, and lack of resources meant that writing the article was not truly ‘co-produced’. Indeed, through the process, a public contributor co-author said they found the reviewers’ comments ‘a bit overwhelming’, with uncertainty of how to approach this. Another public contributor co-author expressed similar experiences with reviewers comments on another paper they had previously co-authored. The publication process can be a challenge to researchers as well, who are more familiar with these traditional academic practices.

Sharing power in the face of embedded hierarchies and inequalities is an obvious challenge for co-production. The gap between co-production principles and practice is a tricky territory. Working with everyone who is interested in an issue, having a focus on meeting the priorities of communities and people we work with, and co-producing all aspects of a project from beginning to end will be difficult to deliver in many projects in health and social care research. Working directly with members of the public is likely to require more adaptation of research project processes and to ‘usual ways of doing things’, alongside additional time and resources. People have different skills and uneven access to resources, and people may need considerable training and support to work together more equally. However, our experience is that funders do not necessarily understand this and doing co-production on a small budget can be particularly challenging. Time investment and the emotional work required to build relationships necessary for successful co-production is both under-appreciated and under-resourced. This reflects disparities in power between those who do this work and those who hold most power in universities. Recognising, recording, documenting and consistently budgeting for this work may help to make it more visible. Timing of funding is also crucial as many research teams do not have access to institutional ‘core’ funding, or seed funding grants, for public contributor involvement at the research development stage. As it is unlikely that most co-production projects will be able to include people with all the relevant perspectives and skills it is important to actively discuss and agree who can be involved and to be open about and discuss restrictions, which can be an act of power in itself.

Oliver and Boaz ( 2019 ) want to ‘open the door’ to more critical multidisciplinary accounts of evidence production and use, highlighting that some people want to direct energies to democratise knowledge for all. Interdisciplinary lessons from this project question the extent to which co-production processes can enable this, given the challenges we have highlighted. We consider that the jury is still out on the viability of co-production in the context of health and social care research. While some (Rose and Kalathil, 2019 ) find the promise of co-production untenable in mental health, we hope we can find a meaningful way forward. However, ‘putting what we already know [about co-production] into practice’ (Oliver and Boaz, 2019 ) can be very challenging. Our own experiences led us to reflect that to be working toward co-production principles means that you have to consistently be challenging ‘business as usual’—we consider a key point here is how to maintain sufficient self and team support to keep trying to do this in practice. Establishing reflective processes that encourage consideration of power issues are likely to be essential. Our approach to help ourselves and others navigate the challenges of co-production has been to identify ways in which groups can start to address power issues as highlighted in Tables  1 and 2 , and to develop practical freely available outputs including a map of resources and reflective questions (Farr et al., 2020 ; Davies et al., 2020 ). We need to understand more about how effective these strategies are, and whether co-production really does make a difference to the use of research. We need to encourage honest reporting of projects, their outcomes and the balance between the benefits and challenges of trying to implement the principles. However, power structures may mitigate against reporting of challenges and problems in research. Other research gaps include understanding what projects will benefit most from a co-production approach. Can co-production deliver more practical and implementable research findings, and if so how? How do we best challenge and change some of the structural inequalities within academia that impede co-production (Williams et al., 2020 )? How do we integrate experiential, practice and research-based knowledge to improve health and social care?

Our experiences on this project highlight the ongoing challenges to truly put the principles of co-production into practice. During this project we used the phrase ‘I am always doing what I can’t do yet in order to learn how to do it’ (van Gogh, 1885 ), to illustrate our limitations, yet continual striving toward an ideal. The quote continues ‘…I’ll end by saying that the work is difficult, and that, instead of quarrelling, the fellows who paint peasants and the common people would do wisely to join hands as much as possible. Union is strength…’ (van Gogh, 1885 ). Forgiving the dated language and connotations of this quote, the principles of joining hands and facilitating union are important co-production ideals that we continually need to remember, relearn and put our hearts into practising.

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Acknowledgements

This project was funded by the University of Bristol Public Engagement Seed Funding and Research Staff Development fund. It was supported by the National Institute for Health Research (NIHR) Applied Research Collaboration West (NIHR ARC West). The views expressed in this article are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. Many thanks to everyone who attended our workshops, got involved in and supported the project to help us develop our resources and training. We couldn’t have done this with you!

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Michelle Farr, Philippa Davies, Heidi Andrews, Darren Bagnall & Emer Brangan

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Farr, M., Davies, P., Andrews, H. et al. Co-producing knowledge in health and social care research: reflections on the challenges and ways to enable more equal relationships. Humanit Soc Sci Commun 8 , 105 (2021). https://doi.org/10.1057/s41599-021-00782-1

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Maximising the benefits of research: Guidance for integrated care systems

England has a vibrant research and development ecosystem, with well-developed research infrastructure and research expertise within our health and care workforce. The value of research in transforming health and care is significant; additionally, staff satisfaction, recruitment and retention is higher among staff who are involved in research. The inception of integrated care systems (ICSs) provides the opportunity for systems to embed research within health and care for the benefit of our population. Supporting this opportunity, a clear research thread runs through ICS strategies and plans, from joint strategic needs assessments and joint health and wellbeing strategies , integrated care strategies , joint forwards plans , integrated care board (ICB) annual reports and the assessment by NHS England of the discharge of duties by ICBs.

The Health and Care Act 2022 (the 2022 Act) sets new legal duties on ICBs around the facilitation and promotion of research in matters relevant to the health service, and the use in the health service of evidence obtained from research. NHS England will assess ICBs for their discharge of these duties. The ICS design framework sets the expectation that in arranging provision of health services, ICBs will facilitate their partners in the health and care system to work together, combining expertise and resources to foster and deploy research and innovations. This guidance supports ICBs in fulfilling their research duties.

ICSs are encouraged to develop a research strategy that aligns to or could be included in their integrated care strategy. This strategy will enable the unification of research across ICS partners, and be consistently embedded to:

• identify and address local research priorities and needs, and work collaboratively to address national research priorities
• improve the quality of health and care and outcomes for all through the evidence generated by research
• increase the quality, quantity and breadth of research undertaken locally
• extend and expand research in settings such as primary care, community care, mental health services, public health and social care
• drive the use of research evidence for quality improvement and evidence-based practice
• influence the national research agenda to better meet local priorities and needs
• improve co-ordination and standardisation within and between localities for the set up and delivery of research
• harness the patient and economic benefits of commercial contract research
• co-ordinate and develop the research workforce across all settings.

1. Introduction

This guidance sets out what good research practice looks like. It supports integrated care systems (ICSs) to maximise the value of their duties around research for the benefit of their population’s health and care and, through co-ordination across ICSs, for national and international impact. It supports integrated care boards (ICBs), integrated care partnerships (ICPs) and their partners to develop a research strategy that aligns to or can be incorporated into their integrated care strategy, and helps them and their workforce to build on existing research initiatives and activities across health and social care to improve sector-wide performance and best practice

• explains the ICB legal duties and other requirements around research and the use of evidence from research, and that research is included in forward planning and reporting
• encourages system leaders to develop a footprint-wide research strategy that aligns to local and national research priorities, develops and supports their workforce, takes the opportunities offered by commercial research and includes plans to embed research in their system’s governance and leadership
• identifies best practice examples and other resources that ICBs may find useful as they develop their research strategies.

This guidance provides comprehensive information for use by:

• those with senior responsibility, including at board level, for research strategy development and/or operationalising research
• managers responsible for developing joint strategic needs assessments, integrated care strategies, joint health and wellbeing strategies, joint forward plans, other linked strategies, or reporting on ICB activities
• research managers
• research and development/innovation leads
• heads of services
• knowledge and library specialists.

It may also be useful to individuals involved in research, education, and partner organisations such as local authorities, social care services, the voluntary, community and social enterprise sector (VCSE) and other providers of healthcare services.

NHS England provides guidance on embedding research in the NHS and secure data environments, and the Office for Life Sciences (OLS ) champions research, innovation and the use of technology to transform health and care service. Other sources of guidance, support and information are signposted in this guidance to support ICSs in aligning to national visions, strategies and plans around research.

1.1 Definition of research

NHS England uses the UK Policy Framework for Health and Social Care Research definition of research:

“… the attempt to derive generalisable or transferable new knowledge to answer or refine relevant questions with scientifically sound methods. This excludes audits of practice and service evaluation. It includes activities that are carried out in preparation for or as a consequence of the interventional part of the research, such as screening potential participants for eligibility, obtaining participants’ consent and publishing results. It also includes non-interventional health and social care research (that is, projects that do not involve any change in standard treatment, care, or other services), projects that aim to generate hypotheses, methodological research and descriptive research”.

This broad definition encompasses the range of types of research:

• clinical trials and other clinical investigations into the safety and effectiveness of medicines, devices and health technologies
• public health research
• observational studies
• discovery science and experimental medicine
• translational research in which results from basic research are developed into results that directly benefit people
• applied research
• research to support policy-making and commissioning
• social care research and research in social care settings
• research into NHS services and care pathways.

1.2 Why research is important

The UK is a world leader for research and invention in healthcare, with around 25% of the world’s top 100 prescription medicines being discovered and developed in the UK ( The impact of collaboration: The value of UK medical research to EU science and health ). Research in the health and care system is important because it underpins all advances in health and care and is the basis for evidence-based practice. Engaging clinicians and healthcare organisations in research is associated with improvements in delivery of healthcare ( Does the engagement of clinicians and organisations in research improve healthcare performance: a three-stage review) . To benefit service users and the public, the NHS and local government, and achieve return on investment, it is vital that research is disseminated, shared and translated into practice.

The National Institute for Health and Care Research (NIHR) is funded by the Department of Health and Social Care (DHSC) to transform research in the health and social care system, including through support for NHS research. Research led to the first proven treatments for Covid, for example the use of dexamethasone, estimated to have saved over a million lives worldwide . This success was in part due to how research is undertaken in the unique environment of the NHS, innovative trial designs, the support provided by the NIHR, frontline staff enabling research, and the awareness and readiness of the public to support research. We need to learn from these and other successes, and translate this across all health and care settings. ICSs will play a vital role in enabling research to be embedded in evolving patient pathways across their footprints.

Example: PRINCIPLE trial – finding treatments for Covid recovery at home

The Platform Randomised Trial of Treatment in the Community for Epidemic and Pandemic Illnesses (PRINCIPLE) was a UK-wide, clinical study to find Covid treatments for recovery at home without the need to attend hospital. The study was open to all with ongoing Covid symptoms, registration was easy, and the trial was run entirely remotely by delivering ‘participant packs’ to people’s homes. It was one of the first trials in the world to show that azithromycin and doxycycline did not benefit patients with Covid and to identify the effectiveness of a commonly used drug – inhaled budesonide –in reducing time to recovery.

The PRINCIPLE study team demonstrated the integral role that primary, secondary and ambulatory care staff can play in the delivery of studies. Local collaborators were trained in good clinical practice to allow them to assess and confirm the eligibility of potential participants, and were commended specifically for their use of patient data to contact people soon after they received a positive test result. It is this network of local staff contributing to research within their healthcare setting that has enabled over 10,000 people to be recruited onto this study so far – one of the largest at home Covid treatment studies worldwide.

This is an example of a study design that incorporates the vital contributions of healthcare providers across the system.

Policy-makers and commissioners need evidence to support their decision-making around the delivery and system-wide transformation of health and care services, including how health inequalities will be reduced.

There is also evidence that:

• staff involved in research have greater job satisfaction and staff turnover is lower in research active trusts ( Academic factors in medical recruitment: evidence to support improvements in medical recruitment and retention by improving the academic content in medical posts)
• research active hospitals have lower mortality rates, and not just among research participants ( Research activity and the association with mortality )
• 83% of people believe that health research is very important ( Survey of the general public: attitudes towards health research)
• healthcare performance improvements have been seen from the creation of academic research placements ( Experiences of hospital allied health professionals in collaborative student research projects: a qualitative study )
• clinical academic research, and in particular the practice changes resulting from it, is associated with improved patient and carer experiences ( A qualitative systematic review and thematic synthesis exploring the impacts of clinical academic activity by healthcare professionals outside medicine ).

Key to having research embedded in health and care is having staff who can understand, undertake, use and generate new research, and share actionable research finding as part of a pro-research culture. Education and training are therefore critical for research to be sustainably embedded within health and care, and for people to develop careers in research and support it in their clinical or care roles.

DHSC, NHS England, the devolved administrations, NIHR and other partners expect to publish a clinical research workforce strategy in 2023/24 to help the UK realise the national clinical research vision outlined in Saving and Improving Lives: The Future of UK Clinical Research Delivery and deliver the Life Sciences Vision to see research embedded in the NHS as part of health and care pathways.

Research will support ICSs to deliver on their four key aims:

Improving outcomes

The NHS 2023/34 priorities and operational planning guidance emphasises the importance of research in improving patient care, outcomes and experience.

Research evidence will inform commissioning decisions to improve experience and outcomes. Research activities should align with the local health priorities identified through local joint strategic needs assessments, and may be best designed and delivered by collaborating with partners. Research priorities may be best addressed by collaborating with partners nationally to design and deliver research.

Tackling inequalities

Research can give a better understanding of local populations and the wider determinants of health, and with this the steps to maintain health and narrow health inequalities.

Enhancing productivity

The development of ICSs creates the opportunity to consider research delivery within the ICS and across ICS boundaries, increasing flexibility of workforce or recruitment while reducing bureaucracy and improving research productivity and value for money.

Supporting social and economic development

An active research ecosystem working in a co-ordinated way and to national standards brings revenue and jobs to regions. The NIHR Clinical Research Network (CRN) supports service users, the public and health and care organisations across England to participate in high-quality research. The 2019 impact and value report detailed the significant income and cost savings that commercial research generates for NHS trusts. Between 2016/17 and 2018/19 the NHS received on average £9,000 per patient recruited to a commercial clinical trial and saved over £5,800 in drug costs for each of these patients. This equates to income of £355 million and cost savings of £26.8 million in 2018/19.

In 2021 150 members of the Association of Medical Research Charities funded £1.55 billion of medical research, including the salaries of 20,000 researchers. Every £1 million spent by charities on medical research in the UK contributes £1.83 million to the economy.

Example: Research that cut problematic prescribing and generated cost savings in general practice – a local health priority

Analysis of routine patient data identified the need for strategies targeting clinicians and patients to curb rising opioid prescribing. From this, the Campaign to Reduce Opioid Prescription (CROP) was launched in 2016, urging GPs across West Yorkshire to ‘think-twice’ before prescribing opioids. This promoted the NICE guidance on chronic pain , which recommends reducing the use of opioids because there is little or no evidence that they make any difference to people’s quality of life, pain or psychological distress, but they can cause harm, including possible addiction.

Over a year 15,000 fewer people were prescribed opioids (a 5.63% relative reduction), a net saving to the NHS of £700,000. The biggest reduction was in people aged over 75, who are at higher risk of opioid-related falls and death, and there was no compensatory rise in the prescribing of other painkillers or referrals to musculoskeletal services.

The CROP campaign, led by researchers at the University of Leeds, has subsequently been rolled out across all ICBs in Yorkshire and the Humber, and the North East and North Cumbria ICB, and the 1,045 practices to which it has been delivered are reporting results similar to the above.

Foy R, Leaman B, McCrorie C, Petty D, House A, Bennett M, et al (2016) Prescribed opioids in primary care: cross-sectional and longitudinal analyses of influence of patient and practice characteristics | BMJ Open 69(5).

Alderson SL, Faragher TM, Willis TA, Carder P, Johnson S, Foy R (2021) The effects of an evidence- and theory-informed feedback intervention on opioid prescribing for non-cancer pain in primary care: A controlled interrupted time series analysis. PLOS Med .

2. ICS, ICP and ICB responsibilities and requirements

ICBs have legal duties and other requirements that relate to research. These are additional to the duties and responsibilities of individual providers within ICS footprints. This section sets out what these duties mean in practical terms and gives examples of how to meet them.

2.1 Legal duties relating to research in the Health and Care Act 2022

Part 1 of the 2022 Act includes specific legal duties for ICBs and NHS England in respect of research. In the Explanatory Notes to the 2022 Act, government sets out how ICBs could discharge their research duty.

Duty to facilitate or otherwise promote research

The ICB duty builds on the previous clinical commissioning group (CCG) duty to promote research, by requiring each ICB, in the exercise of its functions, to facilitate or otherwise promote research on matters relevant to the health service. This duty is intended to include a range of activities to enable research. Section 3 of this guidance outlines ways in which ICBs can do this.

The NHS Constitution also makes clear that patients should be enabled to take part in research: “the NHS pledges … to inform you of research studies in which you may be eligible to participate”.

The Provider Selection Regime (PSR) will be a new set of rules for arranging healthcare services in England, introduced by regulations made under the 2022 Act. The research component should be referred to once the PSR is published.

Duty to facilitate or otherwise promote the use in the health service of evidence obtained from research

This duty similarly builds on the CCG requirement to promote the use of evidence. ICBs must, in the exercise of their functions, facilitate or otherwise promote the use in the health service of evidence obtained from research. For example, ICBs should facilitate or otherwise promote the use of evidence in care, clinical and commissioning decisions.

Duty for ICSs to include research in their joint forward plans and annual reports

Joint forward plans are five-year plans developed by ICBs and their partner NHS trusts and foundation trusts. Systems are encouraged to use the joint forward plan as a shared delivery plan for the integrated care strategy and joint health and wellbeing strategy, aligned to the NHS’s universal commitments. The plan must explain how the ICB will discharge its duties around research, and the ICB must report on the discharge of its research duties in its annual report. These inclusions will raise the profile of research at board level and help embed research as a business-as-usual activity.

The joint forward plan and NHS Oversight Framework guidance set the minimum requirements for what needs to be included in plans and reports.

NHS England duty to include how each ICB is carrying out its duties relating to research in its annual performance assessment of each ICB

NHS England has a new legal duty to annually assess the performance of each ICB and publish a summary of its findings. For 2022/23 NHS England will complete a narrative assessment, identifying areas of good and/or outstanding performance, areas for improvement and any areas that are particularly challenged, drawing on national expertise as required and having regard to relevant guidance. This assessment will include a section considering how effectively the ICB has discharged its duties to facilitate or otherwise promote research and the use of evidence obtained from research.

This, alongside the implementation of the NHS Long Term Plan commitment to develop research metrics for NHS providers, will increase transparency across the system and enable more targeted support for research. Research metrics from NHS England, the Care Quality Commission (CQC) and NIHR will enable the monitoring of progress over time, and are under development with sector colleagues, including providers.

2.2 Legal requirement to work with people and communities

Working with people and communities is a requirement of ICBs, and statutory guidance is available to support them and their partner providers meet this legal duty. A co-ordinated approach across healthcare delivery and research will make it more likely that research reflects what matters to people and communities.

This will also help ICBs to fulfil their legal duty in the 2022 Act to reduce health inequalities in access to health services and the outcomes achieved. Section 3.9 includes links to resources to help guide engagement with underserved communities around research.

The Public Sector Equality Duty also applies and requires equality of opportunities between persons who share a relevant protected characteristic and persons who do not.

2.3 Research governance

While research can address local priorities, it typically operates across ICS boundaries and at national and international levels. Health and social care research is governed by a range of laws, policies, and international, national and professional standards.

The Health Research Authority (HRA ) is responsible for ensuring such regulation is co-ordinated and standardised across the UK to make it easier to do research that people can trust. The HRA is an executive non-departmental public body created by the Care Act 2014 to protect and promote the interests of patients and the public in health and social care research, including by co-ordinating and standardising the practice of research regulation. Local authorities and the NHS are obliged to have regard to its guidance on the management and conduct of research.

Before a research project can start in the NHS in England it must receive approval from the HRA. This includes research taking place in NHS trusts, NHS foundation trusts, ICBs or primary care providers of NHS commissioned services in England, and all research under an NHS duty of care, including that undertaken by NHS staff working in social care or other non-NHS environments.

The HRA schemes indemnify NHS organisations accepting these assurances against any claim covered by the NHS Litigation Authority arising as a result of incorrect assurances. If an NHS organisation duplicates the HRA assessments, it will be liable for any consequences of the decisions it bases on its own checks.

ICBs and partner organisations should have processes for the set up and delivery of research that comply with national laws and systems, and does not duplicate them. Such national systems include confirmation of capacity, National Contract Value Review (NCVR), management of Excess Treatment Costs (ETCs) and contracting arrangements (see section 2.4).

The UK Policy Framework for Health and Social Care sets out the roles and responsibilities of individuals and organisations involved in research.

2.4 Contractual requirements around research

NHS England mandates commissioner use of the NHS Standard Contract for all contracts for healthcare services other than primary care. The contract is updated annually. References to research in the current NHS Standard Contract and service conditions fall into three main areas.

Recruitment of service users and staff into approved research studies

The NHS Standard Contract obliges every provider of NHS-funded services to assist the recruitment of suitable subjects (whether patients or staff) into approved research studies. This requirement aligns to those in the 2022 Act that require ICBs to facilitate or otherwise promote research (see section 2.1). Section 3 considers how this requirement can best be met. Research involving people or their data requires ethical and potentially other approvals (see section 2.3).

National Directive on Commercial Contract Research Studies

Adherence to the National Directive is mandated as part of the NHS Standard Contract. The directive states that providers must:

• Use the unmodified model agreements for sponsor-to-site contracting; HRA and Health and Care Research Wales (HCRW) approval of studies will be dependent on use of these templates.
• Use the standard costing methodology to set prices for commercial contract research undertaken by NHS providers; this is currently in the NIHR interactive costing tool (NIHR iCT).
• Introduce the National Contract Value Review (NCVR) process in line with national rollout. NCVR is a standardised national approach to costing commercial contract research within the NHS. It currently covers acute, specialist and mental health trusts, but the intention is to roll it out to all NHS providers. The creation of ICSs is the ideal opportunity to explore how commercial study set up can be supported across these footprints, reducing the resource needed and time taken.

Comply with HRA/NIHR research reporting guidance

The provider must comply with HRA/NIHR research reporting guidance, as applicable.

2.5 Excess treatment costs

Patients in a research study may receive healthcare that differs from what is standard in the NHS, requires more clinician time or is delivered in a different location. The associated NHS treatment costs may exceed or be less than those of standard treatment. If greater, the difference is referred to as the NHS Excess Treatment Costs (ETCs).

In the case of commercial contract research, the commercial funder will pay the full cost of the study. In the case of non-commercial research, the commissioner of the service in which the study operates is responsible for funding the ETCs.

ICBs as commissioners of services are responsible for ETCs in services that they commission. Guidance for the management of ETCs is available.

DHSC and NIHR are piloting interim arrangements to support non-NHS ETCs for research in public health and social care (non-NHS intervention costs). Please refer to the further detail on the NIHR website .

2.6 Care Quality Commission

The CQC is currently developing its approach for ICS-level assessments, and its new assessment framework will be introduced towards the end of 2023 .

CQC inspection of NHS providers continue, with research assessed as part of the review of the trust-level Well-led framework. Providers are asked:

• Are divisional staff aware of research undertaken in and through the trust, how it contributes to improvement and the service level needed across departments to support it?
• How do senior leaders support internal investigators initiating and managing clinical studies?
• Does the vision and strategy incorporate plans for supporting clinical research activity as a key contributor to best patient care?
• Does the trust have clear internal reporting systems for its research range, volume, activity, safety and performance?
• How are service users and carers given the opportunity to participate in or become actively involved in clinical research studies in the trust?

3. Developing a research strategy

3.1 why develop a research strategy.

Like the health and care system, the research environment is complex. Developing a research strategy will help bring together the legal and other duties around research in a coherent way, and help the ICS understand its local research capability, workforce, activity and needs, set ambitions around research and maximise the benefits associated with commercial research. It will help demonstrate the benefit of research locally, nationally and internationally, and guide the production of clear plans.

Example: Value of research partnerships and integration with ICSs

Bristol Health Partners (BHP) Academic Health Science Centre (AHSC) has a fully integrated relationship as the new Research and Innovation Steering Group for the Bristol, North Somerset and South Gloucestershire (BNSSG) ICS, and reports directly to ICB chief executives.

The group provides the strategic direction and oversight for all research undertaken and delivered across the system. Membership includes directors of research, clinical strategy, public health, social care, senior innovation and education leaders from its core funding partners. It also includes public contributors and senior representatives from primary care, NIHR Applied Research Collaboration West, NIHR CRN West of England, West of England Academic Health Science Network (WEAHSN), Healthier Together ICS, university research institutes and People in Health West of England.

The group has reviewed ICS programmes, identified current and potential research and innovation connections, and begun to establish new connections. It has also supported work with the ICS Ageing Well programme and secured funding for innovative pilots to improve dementia care and increase physical activity for older adults.

Since 2016 BHP has directly contributed an estimated additional £1.1 million to support ICS priorities through Health Integration Team projects and other activities, and has attracted more than £33 million of external research, service redesign and infrastructure into the region.

3.2 General considerations

In developing its research strategy, the ICS may find it helpful to consider these overarching questions alongside the suggested focused content covered in the sections below:

• What do you hope to achieve within a given timeframe?
• Are all the right organisations involved in developing the research strategy?
• How will the health and care workforce be enabled to deliver the research strategy?
• How can research be embedded in existing health and care delivery and pathways?
• What mechanisms are in place to translate actionable research findings into practice and decision-making?
• What inequalities exist in different areas, communities or groups? How will you ensure planning and delivery of research aligns to CORE20plus5 priorities?
• Are you considering equality, diversity and inclusivity and the Public Sector Equality Duty in facilitating and promoting research opportunities for service users and for health and care staff?
• Is the ICS considering the opportunities of developing their commercial research portfolio?
• Is research informing or being informed by population health management?
• How will you plan and deliver research in a sustainable manner, aligning it to the Greener NHS agenda and the ICB’s duties in relation to climate change ?

Buy-in from NHS staff, patients and the public will be vital if ICBs are to discharge their research duties and deliver on their research plans. An important consideration is how to develop sustainable, routine and accessible information flows to ensure the ICB, partners, staff, patients and public can access up-to-date and appropriate information around local research activity, regional, national and international research opportunities and findings, and contact information.

3.3 Leadership and governance across the ICS

Executive leadership.

The Explanatory Notes to the 2022 Act suggest that ICBs have board-level discussions on research activity, the use of the evidence from research, the research workforce and research culture within the ICS. ICSs should refer to the NHS Leadership Competency Framework for board-level leaders at organisation and ICS level for the competencies relating to the research duties of ICSs, once published.

All ICBs are encouraged to have an executive lead responsible for fulfilling the research duties conferred by the 2022 Act. They should help give the ICB a clear understanding of research across the area, regularly reporting on progress towards agreed aims. An executive lead can take responsibility for ensuring clear research ambitions and a research strategy are developed; oversight of organisational research portfolios, diversity in research, alignment to national priorities; promotion of research skills and the need for research skills training; and succession planning.

Senior leaders could engage, consult and be supported by representatives of each registered health and social care professional group when developing strategic plans, and for oversight of training, succession planning, and equality and inclusivity. They could use the capacity and capability of the research and development leads within provider organisations, although established lead roles across social care settings are rare so extra effort may be needed to garner social care research insight.

Research steering group, board or forum

Some CCGs had research steering groups and some of these have expanded with the widening remit of ICBs. ICSs that do not have a such a group should consider adopting a model similar to one in other ICSs where research is effectively embedded in ICS governance structures.

A dedicated steering research group, board and/or forum can:

• provide dedicated time to plan, oversee and report on research
• bring a range of representatives from research infrastructure organisations, patients and the public together with representation from across the ICS, to develop a common aim and objective
• ensure board-level sight of research
• take a cross-ICS approach to research, increasing participation and diversity in research, and reducing bureaucracy.

Example: A dedicated research and innovation subgroup

East and North Hertfordshire Health Care Partnership established a formal research and innovation subgroup to support its objectives to transform services, reduce health inequalities and improve patient health and wellbeing. This subgroup is dedicated to determining and supporting local research priorities and developing an innovation agenda. With effective patient and public involvement, it is working to ensure the local population has access to more research opportunities.

Bringing together the NIHR, academia, industry and local health and care services, the subgroup develops collaborative work plans that support the design, implementation and evaluation of local transformation needs, sharing resources, staff, expertise and facilities. Its work exemplifies a sustainable approach to partnership working and supports Hertfordshire and West Essex ICS’s developing strategy.

HWE ICS Partnership Board 14 September 2021

3.4 Understanding your research activity and working with local and national research infrastructure

Research in NHS and non-NHS settings across an ICS footprint will be supported by different organisations. In some areas networks or collaboratives already exist to bring these organisations together, but in others the links are not as well formed. ICBs would benefit from having a clear map of the research infrastructure and pre-existing local or national investment into research in their area.

It may be valuable to consider:

• Who are the research leaders in your local health and care system, NIHR, higher education institutions, VCSE sector and businesses?
• Are there any pre-existing local or regional research, researcher or research engagement networks?
• What are the opportunities to inform, participate in, collaborate with or lead national and international research efforts in addition to local opportunities?

A list of organisations involved in research including NIHR-funded infrastructure and programmes is included in Annex 1 .

Much of the research undertaken in NHS and other health and care settings is funded though national calls and grants provided by funders such as NIHR, research charities , UK Research and Innovation (UKRI) , including the Medical Research Council (MRC ) and Economic and Social Research Council (ESRC) , and is aligned to national priorities. Other research may include national or international commercial or non-commercial clinical trials funders.

Partners within ICS systems can use NIHR research portfolio data to monitor and plan research activity; however, not all research is included within the NIHR’s portfolio, so this will not give a full picture of the research within the footprint. Mechanisms to map and monitor research more widely could be incorporated in ICB research strategies.

Some local needs may best be addressed through public health or social care research rather than research in primary, secondary or tertiary healthcare settings. Public health and social care research are described in Annex 2 .

Example: Mapping health and care research activity, expertise, interests and infrastructure

The Nottingham and Nottinghamshire Integrated Care System Research Partners Group meets bi-monthly and is chaired by the ICB Head of Research and Evidence. It brings together senior managers from the NHS providers, ICB, two local authorities, two universities and the NIHR CRN East Midlands, providing a forum for ICS-wide research discussions and the development of a system-wide collaborative approach to health and care research across the ICS. Among its aims, the group seeks to increase participation in research at both the organisational and population level, enable equity of access to research opportunities and generate impact on health and care pathways.

The group have mapped health and care research activity, expertise, interests and infrastructure in the constituent organisations. With this the ICS can see the research capabilities, strengths, expertise, and areas of synergy and opportunities for future collaboration that align to its needs and priorities, and also gaps for future development, recognising that organisations are at different stages of research development.

3.5 Understanding local needs

Universal NHS priorities will be reflected in local research needs, and each ICS footprint is likely to have its own specific local research needs. Joint strategic needs assessments (JSNAs) are undertaken jointly by local authorities and ICBs through health and wellbeing boards (HWBs) to identify current health and social care needs of local communities, where more information is needed to do so or to understand how best to address the need. People and communities should be directly involved in identifying local need, including by working with local charities, specific communities or groups who face inequalities in access to, experience of or outcomes from healthcare, eg to target health research at those areas and populations with greatest need.

ICPs are required to develop an integrated care strategy informed by JSNAs and the joint health and wellbeing strategy (JHWS). The integrated care strategy sets out how the assessed needs can be met through the exercise of the functions of the ICB, partner local authorities or NHS England, and is informed by research and practice-based evidence, as stated in the health and wellbeing guidance. In considering where such evidence is lacking, HWBs should identify in JSNAs those research needs that ICBs, local authorities and NHS England could meet through the exercise of their research functions.

Systems are encouraged to use their joint forward plan to develop a shared delivery plan for the Integrated Care Strategy and the JHWS that is supported by the whole system, including local authorities and VCSE partners. ICBs and trusts must also use their Joint Forward Plan to describe how the ICB will discharge its duty in respect of research.

The Explanatory Notes to the 2022 Act suggest how ICBs can discharge their duties around research. These include the articulating local research needs when assessing local needs and how they will be addressed when preparing strategies and plans, and encouraging partner organisations to play an active and collaborative role in pursuing these.

3.6 Supporting delivery of research

Once an ICS has a clear picture of its local research infrastructure it can consider how best to target and support research and the research workforce across its footprint and how research findings will be used. For this, the ICB should ensure that its approaches reflect national approaches to costing, contracting, approvals and information governance, and that they are also informed by learning from effective practices across equivalent ICBs.

As healthcare shifts into communities, ICSs should support the parallel shift in research by embedding research in health and care. Increasing access to research opportunities will give service users earlier access to new treatments, and faster research set up and delivery may provide the evidence needed to support improvements to local care sooner. Inclusive recruitment practices will be needed to ensure that all groups in society have the opportunity to help shape and take part in research, and benefit from research findings.

In developing its research strategy, an ICS has opportunities to reduce bureaucracy, and make research more efficient and effective across its own and with other ICS footprints, and across NHS and non-NHS boundaries, while meeting national regulatory guidance. ICBs will be expected to work with the HRA to co-develop, build on and implement strategies for further co-ordination and standardisation of study set-up and delivery processes. Any regional systems and processes that ICBs do establish must support consistent national practice in relation to the management and regulation of research, and should not duplicate them. The HRA will work with ICBs to address barriers to efficient and rapid study set-up, including model agreements, information governance and R&D office functions.

Other potential areas for streamlining and cross-organisational working include:

• cross-ICS research proposals to identify research needs
• research delivery – identifying how ICS-wide approaches could accelerate patient recruitment and deployment of research delivery staff
• shared data architecture, including the NHS Secure Data Environment for Research Network and its subnational secure data environments (SDEs). Subnational SDEs cover multiple ICSs to achieve access to multimodal data at a scale of approximately 5 million citizens, and over time will achieve technical and governance interoperability
• a greater focus on translation and implementation of research findings into health and care practice, supporting faster improvements
• sharing access to and funding for knowledge and library services
• shared processes and repositories for research assets.

The Explanatory Notes to the 2022 Act suggest that one way an ICB could discharge its research duty would be to have a dedicated research office or team supporting research.

3.7 Enabling cross-provider research

Health and care priorities can often only be addressed with complex, multiorganisational approaches and as such the research to inform these needs to span organisational boundaries. Organisational policies should promote cross-organisational research and dissemination of research findings, including through participation in collaborative research to address national priorities, joint staff posts, honorary contracts, and administratively easier movement of researchers between health and care organisations and other sector partners, including higher education, industry, charities and local authorities.

The HRA and ICS partners are developing national guidance to support cross-provider research.

The NIHR CRN can offer ICSs opportunities to participate in national and international research studies, including those the NIHR, industry and others commission.

3.8 Commercial research

Commercial contract research is research funded solely by industry, where NHS providers are contracted to carry out the research. Most of these research studies in the NHS are interventional clinical trials, such as the NHS-Galleri trial and Astra Zeneca’s COVID-19 vaccine development . Commercial research can give patients access to a wider range of research opportunities, earlier access to novel therapies and treatments, provide drugs free of charge to patients in trials, accelerate the development of new treatments and devices, generate income for providers, and fund NHS staff. It is vitally important for the benefit of patients, the NHS and the UK economy that we create an environment in the NHS that makes it easy and efficient for the NHS to undertake commercial research. This is particularly important when it comes to international commercial research, where companies can place their studies in a number of different countries and consideration of anticipated set up and recruitment times informs where they place trials.

Data gathered during some commercial research is specific to the study and is the property of the company, as is any Intellectual Property (IP) generated. In other cases, where the NHS contributes to the foreground IP – such as through the use of NHS data for research or where NHS expertise provides important contributions to a commercial product – it is important that the NHS shares in the value of IP generated as a consequence of its contributions.

The establishment of ICSs is an ideal opportunity for their creation of ambitions to enable, grow and benefit from commercial research. ICSs should explore how efficient commercial study set up and delivery could be streamlined across sites within their footprint, and should set ambitions around commercial research.

3.9 Involving patients, service users, carers and the public in research

In developing a research strategy ICSs should set out their approach to diverse public and patient involvement (PPI) in relation to research.

Areas where working with people and communities could add value in the context of research include:

• identification of local research needs, including through JSNAs and JHWSs
• designing research proposals in partnership with local or national experts
• raising awareness of research opportunities and recruitment of participants
• developing research outcome reports and identification of how and when participants will be able to access these
• consideration of how members of the public can access the outputs from publicly-funded research
• how volunteers should be involved and what they should be paid.

The UK Standards for Public Involvement sets out the core components of good public involvement. A guide outlining good practice in engaging underserved communities around research is available from NHS England. Resources about good practice around PPI in designing and delivering research, including around incentivisation , are also available from the HRA and NIHR .

It will be useful to link into established community involvement approaches. NIHR infrastructure organisations may have established networks of expert PPI representatives, and ICSs have extensive VCSE Alliances. A co-ordinated community engagement approach across health and care delivery and research will reduce the risk of overburdening communities with organisations wanting to work with them, and will support the identification of under-served communities.

3.10 Ensuring anyone can participate in research

Making research more visible within communities and increasing the public’s understanding of research can ensure greater diversity in research participation. Research findings will then be more generalisable to a broader range of groups or communities, or can be targeted and specific to relevant communities.

ICSs should seek mechanisms to ensure that opportunities to take part in research are available to all. They should consider encouraging patients and members of the public to register on NIHR Be Part of Research (a national registry where people can express their interest in being contacted about research that is relevant to them), widely disseminate research opportunities and make provision for inclusive access for communities to take part in research. Decentralised or virtual trials are remote access trials recruited to and delivered using electronic tools, making it easier for people to participate in some studies without needing to visit a recruiting hospital or attend appointments in person. ICBs should consider ways in which research delivery can increase access to research opportunities for people within their area. ICBs should also advise the public how they can access research outputs.

NIHR and UK Research and Innovation provide resources that help organisations address issues of equality, diversity and inclusion in research settings.

Example: RELIEVE-IBS decentralised trial

In 2020, Newcastle researchers launched RELIEVE-IBS, one of the first interventional decentralised clinical studies in the UK to trial Enterosgel, a new treatment for irritable bowel syndrome with diarrhoea (IBS-D). Decentralised trials are remote access trials that use electronic tools for trial recruitment and delivery, without the patient needing to visit a recruiting hospital site, which could be miles from their homes – a convenient option for patients with IBS-D. By running the trial remotely, researchers could reach beyond the small proportion of those with this condition who attend specialist clinics, as well as save resource for the sponsor.

Not only did this trial embrace technological developments to deliver research, but it empowered more patients to become involved regardless of where they lived. With in-depth patient input, the research team were able to shape the recruitment approach to be highly accessible to participants and were offered feedback on how to refine the trial design by the sponsors. The resulting patient-centric design ensured a good recruitment response when the trial opened.

NIHR (2020) Virtual trial recruits 67% faster led by NIHR Patient Recruitment Centre in Newcastle in collaboration with Enteromed

NIHR (2021) Pushing virtual boundaries to improve patient engagement and accessibility

NIHR (2022) RELIEVE IBS-D trial case study

3.11 Health data in research

Health data generated through care of service users in the NHS can fuel a revolution in the research and development of new diagnostics and treatments, maximising the potential to improve service user outcomes and experiences, support diversity in research, and minimise health inequalities through research. To do this, researchers need access to high quality and timely data to generate insights. The public expect data to be used legally and efficiently to conduct and support research.

National commitments around data for research can be found in Data saves lives: reshaping health and social care with data . This strategy shows how data will be used to bring benefits to all parts of health and social care. To achieve this vision, the NHS will be making a strategic move away from a system of data dissemination to one of data access when making NHS health and social care data available for research and analysis. This will be facilitated by the implementation of secure data environments (SDEs).

SDEs are data storage and access platforms with features that enable organisations to have greater control and oversight over their data. SDEs allow approved users to view and analyse data without it having to leave the environment. The SDE policy guidelines provide a clear signal to the sector that SDEs will become the default way of accessing NHS data for research.

This change is supported by major investments in digital infrastructure through the Data for Research & Development Programme, which is funding the development of national and subnational SDEs. The subnational SDEs will cover the entirety of England and individual platforms will cover several ICS.

ICBs should seek ways to promote and enable the use of these rich data sources for research and include them in their research strategy.

3.12 Using evidence for planning, commissioning and improving health and care

Evidence-based commissioning has advantages for the commissioner, workforce and service users, as it can:

• lead to innovation in service design and delivery
• enhance the quality of health and care provision
• reduce clinical variation between locations and providers
• improve equity of access to services
• improve patient and population outcomes.

As part of the commissioning process, commissioners are expected to use evidence-based clinical policies, as per the Roadmap for integrating specialised services within integrated care systems . Knowledge and library services can help source and interpret evidence.

The Provider Selection Regime will reflect the research duties of the 2022 Act and should be referred to when commissioning provider services, once it has been published.

NHS knowledge and library services provide access to evidence and support for knowledge management; they train people in searching for, handling and publishing information. The Knowledge for Healthcare strategy encourages and equips NHS knowledge and library services to support NHS organisations with the translation of knowledge for the spread and adoption of research and innovation. To fulfil their obligations under the 2022 Act, ICBs could commit to active knowledge translation.

Evidence for commissioning information is available from a number of sources:

• NHS Library and Knowledge Hub
• Health Libraries and Information Services Directory
• NICE guidance
• NIHR evidence
• NHS evidence works toolkit
• Academy of Medical Royal Colleges: Evidence-based Intervention
• A million decisions

The infographic for the role of research and evidence in commissioning also provides sources for evidence-based commissioning.

Example: Evidence mobilisation, knowledge sharing and improving outcomes

The STEMClub (Sustaining Transformation by Evidence Mobilisation) is a network in the North East and North Cumbria that brings together local policy and decision-makers with NHS knowledge and library specialists to facilitate evidence-based decision-making. The input of knowledge specialists ensures timely access to published research and provides knowledge management expertise to shape how soft intelligence is translated into knowledge assets.

As members within the STEMClub network, knowledge and library specialists are providing ongoing detailed evidence reviews and information management expertise to facilitate system-wide working , eg:

• North East North Cumbria Frailty Framework
• North East and North Cumbria Maternity Clinical Network
• a review of optimal patient transfer times in the North East and North Cumbria
• regular evidence summaries for the ICS Mental Health Evidence and Evaluation subgroup.

3.13 The health and care workforce and research

Staff involved in research have greater job satisfaction and research active trusts have lower staff turnover [3] . Clinical academic roles [7] , having research colleagues within services [8] and taking students on research placements [6] are felt to foster an increase in knowledge and skills across the wider staff workforce. The General Medical Council (GMC) and the Royal College of Physicians (RCP) and NIHR have issued position statements and recommendations around research, with additional signatories including UKRI, UKRD, the Academy of Medical Royal Colleges and the Royal College of Surgeons of England. Learning resources, including programmes for ongoing professional development of the research delivery workforce, are available through NIHR Learn.

In developing a research strategy ICSs could ensure that, as part of their people function and approach to workforce planning :

• Staff roles in leading, delivering or facilitating research and in supervising those developing research skills are recognised, supported and enabled across all staff groups and health and care settings as part of a positive research culture.
• The value of evidence is recognised, and education and training around research are facilitated. Opportunities to develop research careers or in overseeing the development of other researchers are enabled; this may include having protected time, inclusion in job plans and joint appointments across health and care providers and academic institutions.
• Ensuring that there is capacity and systems that support research through services like imaging, pathology and pharmacy, as well as finance and human resources.
• Individual organisations do not always have the necessary skills or services to support effective research and its impact, such as IP management, methodological expertise, regulatory compliance, statistical analysis, knowledge mobilisation expertise, genomics expertise, health informatics and data analytics. Mechanisms are needed to ensure that these can readily and rapidly be accessed across other health and care organisations, including from local authorities and other non-NHS care providers.

A UK Clinical Research Workforce Strategy is under development. ICSs should update their approaches to their research workforce once DHSC publishes this in 2023/24.

Example: Investing in the research workforce – developing capacity for chief investigators

Across the West Midlands NIHR CRN, an investment of approximately £750,000 to develop capacity for chief investigators returned additional research grant income of over £18 million in three years. This was achieved primarily by increasing the programme activity for consultants in areas where chief investigators were underrepresented.

The funding was provided through a competitive process and co-supported by the local NIHR CRN, with several local trusts jointly funded these scholars.

Kirk J, Willcocks J, Boyle P, Brocklehurst P, Morris K, Kearney R, et al (2022) Developing chief investigators within the NHS: the West Midlands clinical trials scholars programme. Clin Med 22(2): 149–52.

Kirk J, Reynolds F, Adey E, Boazman M, Brookes M, Brocklehurst P (2022) Developing paediatric chief investigators within the NHS: the Clinical Trials Scholars programme . Arch Dis Child Educ Pract Published online first: 22 February 2022. doi: 10.1136/archdischild-2021-322186

4. References

• Varnai P, Rentel M, Dave A, De Scalzi M, Timmerman W, Rosemberg-Mantes C, Simmonds P, Technopolis Group (2017) The impact of collaboration: The value of UK medical research to EU science and health .
• Boaz A, Hanney S, Jones T, Soper B (2015) Does the engagement of clinicians and organisations in research improve healthcare performance: a three-stage review. BMJ Open 5: e009415. doi:10.1136/ bmjopen-2015-009415 .
• Rees MR, Bracewell M (2019) Academic factors in medical recruitment: evidence to support improvements in medical recruitment and retention by improving the academic content in medical posts. Postgrad Med J 95(1124): 323-327. doi:10.1136/postgradmedj-2019-136501 .
• Ozdemir BA, Karthikesalingham A, Singha S, Poloniecki JD, Hinchliffe RJ, Thompson MM, et al (2015) Research activity and the association with mortality. PLoS ONE 10(2): doi.org/10.1371/journal.pone.0118253 .
• Hunn A (2017) Survey of the general public: attitudes towards health research . Health Research Authority.
• Angus RL, Hattingh HL, Weir KA (2022) Experiences of hospital allied health professionals in collaborative student research projects: a qualitative study. BMC Health Services Research 22(1). Available at: https://doi.org/10.1186/s12913-022-08119-7 .
• Newington L, Wells M, Adonis A, Bolten L, Bolton Saghdaoui L, Coffey M, et al (2021) A qualitative systematic review and thematic synthesis exploring the impacts of clinical academic activity by healthcare professionals outside medicine. BMC Health Serv Res 21(1). Available at: https://doi.org/10.1186/s12913-021-06354-y .
• Wenke RJ, Hickman I, Hulcombe J, Phillips R, Mickan S (2017) Allied health research positions: A qualitative evaluation of their impact. Health Res Policy Syst 15(6). Available at: https://doi.org/10.1186/s12961-016-0166-4

Annex 1 – Organisations that may be involved in regional or local research

• Clinical Research Networks (CRNs) , which will be retendered and renamed regional research delivery networks (RRDNs) from April 2024
• Applied Research Collaborations (ARCs)
• Biomedical Research Centres (BRCs)
• Experimental Cancer Medicine Centres (ECMCs) , jointly funded with Cancer Research UK
• Research Design Services (RDSs) and Clinical Trials Units (CTUs) which will be replaced by the NIHR Research Support Service from 1 October 2023
• Patient Recruitment Centres (PRCs)
• MedTech and In vitro diagnostic Co-operatives (MICs) , which will be replaced with HealthTech research centres from April 2024
• School of Public Health Research, School of Primary Care Research and School of Social Care Research
• Health Determinants Research Collaborations (HDRCs)
• Clinical Research Facilities (CRFs)
• Patient Safety Research Collaborations (PSRCs)
• Translational Research Collaborations (TRCs)
• Academic Health Science Centres (AHSCs)
• university teaching hospitals and all trusts that deliver research activity
• primary care organisations, including GP practices, that deliver research activity
• higher education institutions (HEIs)
• local authorities
• social care partners
• Local Government Association
• local and national charities that fund, collaborate in or support participation in research
• research and development offices in providers or CSUs, including primary care providers and ambulance, community and mental health trusts, and those in the VCSE sector
• UKRD members
• NHS subnational secure data environments for research
• NHS R&D Forum
• NHS Genomic Medicines Service Research Collaborative
• NHS Knowledge and Library Services
• Academic Health Science Networks (AHSNs) are often well linked with research organisations and infrastructure as part of their roles in development, adoption and spread of innovation.

Annex 2 – Public health and social care research

Public health research investigates issues that impact at a population rather than an individual level. This can be done within the NHS with system-level studies, such as secondary prevention of cardiovascular disease and examining the impact on health inequalities of changes to the NHS resource allocation formula, and outside the NHS for the wider determinants of health such as air quality, transport systems and housing. There is a substantial body of public health evidence for the clinical and cost effectiveness of prevention, health protection, health service redesign and addressing health inequalities.

Social care research aims to improve the lives of children and adults who need to draw on personal or practical care and support, and family members or other unpaid carers. It can include research around the introduction, use and impact of technologies, and changing social care interventions, policies and practice. Social care research also examines issues pertaining to the safeguarding of adults and children and workforce, commissioning of services, and questions about organisational and professional practice, including decision-making, training and the quality of care.

Publication reference: PR1662

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How we regulate health and social care research

We are one of a number of organisations that work together in the UK to regulate and approve different aspects of health and social care research.

Most of our functions apply to research undertaken in England but we also work closely with the other countries in the UK to provide a UK-wide system.

What is health and social care research?

Health and social care research aims to find out new knowledge that could lead to changes to health treatments, policies or care. Without health and social care research, clinicians (doctors, nurses, dentists, social workers, and other health professionals) would continue to carry out their work the same way without knowing if a new treatment or approach would be more effective for the person they are supporting or treating.

How is health and social care research funded?

Research can be funded through the NHS itself (commonly through the National Institute of Health Research (NIHR)  which is the research arm of the NHS), commercial organisations (for example, drug companies), universities, research councils, health organisations and charities.

How does research get approved?

Before a research study can start; it needs to be approved first by the relevant bodies and health regulatory organisations.

Research Ethics Committees  (REC) are independent groups of people who review certain types of research to assess whether studies are ethical. The Confidentiality Advisory Group (CAG) provides advice on specific projects that will be using confidential medical information.

Our staff also assesses research in the NHS to make sure that studies comply with relevant legislation and guidelines (such as Clinical Trials Regulations, the Human Tissue Act and the Data Protection Act).

There are other specialist approvals provided by other organisations for some types of research.

Where is research carried out and by whom?

With all the relevant approvals in place, health and social care research is carried out in a number of locations including NHS hospitals, doctors/GP surgeries, dentists, care homes or residential care services with patients and service users. Some health research testing new medicines involves healthy volunteers and takes place in universities or in commercial research centres. In health and social care research, these are called the research sites.

There will be someone responsible for the overall research study called a chief investigator. Usually, this is someone who works directly with patients such as a doctor, dentist, nurse, social worker or a university researcher. The principal investigator is the person responsible for the conduct and day to day running of a study at each research site and will lead a team to carry out the research.

What is public involvement in research?

Patients, carers, service users and members of the public may undertake an advisory role working with a research team to offer valuable insight on their health condition or experiences to help with the design and set up of a research study. When patients and the public undertake this type of role or activity, it is called public involvement in research. Find out more about how we involve the public in our work,  and the benefits to involving the public in research .

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