qualitative research in healthcare settings

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Publications
Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

Advanced Search
Journal List
Sultan Qaboos Univ Med J
v.8(1); 2008 Mar

Qualitative Research and its Uses in Health Care

Although relatively uncommon in health care research, qualitative research is now receiving recognition and is increasingly used in health care research with social and cultural dimensions. Unlike quantitative research, which is deductive and tends to analyze phenomena in terms of trends and frequencies, qualitative research seeks to determine the meaning of a phenomenon through description. It aims to develop concepts that aid in the understanding of natural phenomena with emphasis on the meaning, experiences and views of the participants. Differences among qualitative researchers exist on matters of ontology, epistemology, data collection methods and methods of evaluation. The aim of this article is not to act as a practical guide on how to conduct qualitative research, but is an attempt to give an introduction to qualitative research methods and their use in health-related research.

Q ualitative research is defined as an umbrella term covering an array of interpretative techniques which seek to describe, decode, translate and otherwise come to terms with the meaning, not the frequency, of certain more or less naturally occurring phenomena in the social world. 1 , 2

As a method of inquiry, it was first used by sociologists and anthropologists in the early twentieth century, although it existed much earlier than that in its non-structural form. Researchers studied cultures and groups in their own and foreign settings and told stories of their experience long before then. In the 1920s and 1930s, social anthropologists and sociologists implemented a more focused approach compared to the old unsystematic and journalistic style used in those days. Since the 1960s, qualitative research has experienced a steady growth starting with the development of grounded theory and new publications in ethnography. 3 , 4 The number of books, articles and papers related to qualitative research has increased tremendously during the past 20 years and more researchers, including health-related professionals, have moved to a more qualitative paradigm adapting and modifying these approaches to the study needs of their own areas. 4

Since qualitative research does not aim to enumerate, it is sometimes viewed as the exact opposite to quantitative methods and the two methods are frequently presented as antagonists. Quantitative research is based on structure and uses experiments and surveys as methods. In addition, it is deductive in nature and uses statistical sampling methods. In contrast, qualitative research is described as an action research using observation and interview methods. It is inductive in nature and depends on the purposeful selection of participants. Whereas quantitative researchers use reliability as a way of verification, qualitative researchers use validity. Recently, there has been a growing recognition that the quantitative-qualitative debate and distinction is unnecessary and that it would be more fruitful for the relation between the two methods to be complementary and overlapping rather than exclusive. 6 In fact, neither qualitative nor quantitative research is superior to the other; there are weaknesses and strengths in each method. Qualitative and quantitative research methods can indeed be seen as complementary and both are necessary to provide an understanding of a phenomenon.

Several researchers have argued that the research questions and the phenomenon under investigation should determine the methodology to used. 7 , 8 , 9 The crucial question, therefore, is not “what is the best research method?” but “what is the best research method for answering this question most effectively and efficiently?” 10 So, while qualitative and quantitative research may well investigate similar topics, each will address a different type of question. Holman sums up this position: “true understanding in medicine cannot be achieved without adding qualitative methods to the research arsenal”. 11

Traditional quantitative methods, such as randomised controlled trials, are the appropriate means of testing, for example, the effect of an intervention or a treatment, while a qualitative exploration of beliefs and understandings is needed to find out why the results of research are often not implemented in clinical practice. The aim of qualitative research is to develop concepts that can help us understand social phenomena in natural settings, giving emphasis on the meanings, experiences and views of the participants. 10

Qualitative research methods are the most suitable for this approach because of their emphasis on people’s lived experience. They are considered to be well suited for locating the meanings that people place on the events, processes, and structures of their lives and their perceptions, presuppositions and assumptions. 5 In his advice to graduate students, Patton lists a number of conditions that are suitable for a qualitative study. These include: questions about people’s experiences; inquiry into the meanings people make of their experiences; studying a person in the context of her or his social/interpersonal environment and research where it is difficult to develop a standardised instrument due to the lack of knowledge on the phenomenon. 12

ARGUMENTS FOR AND AGAINST QUALITATIVE METHODS

There are major differences of opinions among qualitative researchers on matters of ontology and epistemology as well as the methods to be used and criteria of evaluation. There are also disagreements about the nature, purpose, status and practice of its methods. A large number of authors take a predominantly method-based approach; authors such as Miles and Huberman 5 and Patton 12 put emphasis on data collection techniques. Another approach is to classify qualitative research according to research traditions, i.e. whether phenomenological, grounded theory or ethnography, amongst others. Authors such as Creswel 9 and Denzin and Lincolin 3 prefer this approach, which has the advantage of being based on systematisation of knowledge providing a sense of order and orientation. On the other hand, it has the disadvantage of oversimplification, ignoring the issues of the research question and conceptual frameworks used and the way these issues can shape the research process and the findings. 13 In addition, some researchers have decided to classify qualitative research according to the research question or the method of analysis.

Although the majority of qualitative researchers stress that qualitative research is inductive in nature, in contrast to quantitative research which is deductive, there are qualitative researchers who argue that both can be used for different purposes and at different times, and that qualitative research can be done in a deductive way where prior assumptions are tested on new cases. 14 Retroduction, which is defined as the movement backward and forward between theory and data or the combination of deduction and induction, is said to be a characteristic of qualitative research. 11 The degree of deduction or induction and which one follows the other depends on the research question. 12 .

Guba and Lincoln 15 used the term “emergent design” to describe a qualitative study design that emerges as the study progresses in response to the researcher’s early observations. There are also qualitative studies in health care that base their research questions on the results of prior literature of quantitative studies on the subject. 16 , 17 While the research questions in these studies were relatively precise, the method used was flexible.

Miles and Huberman 5 state that no study conforms exactly to a standard methodology and that the researcher bends the methodology to the peculiarities of the study. According to Creswell, 9 traditions of inquiry used “need not be pure, and one might mix procedures from several”. Mixing approaches and procedures is encouraged by some authors and regarded as a creative approach to qualitative research. 12

Studies using qualitative research in health care have been criticised for the misguided separation of method from theory and of technique from the conceptual underpinnings. 18 However, qualitative health researchers respond by stating that the choice of method and how it is used can perfectly well be matched to what is being studied rather than to the methodological leanings of the researcher. 10 It has been suggested that incorporating qualitative research method experts into health research teams enriches research and ensures that the right methodology is used for answering the right questions. Finally, using qualitative methods in health-related research has resulted in more insight into health professionals’ perceptions of lay participation in care and identification of barriers to changing healthcare practice.

QUALITATIVE RESEARCH APPROACHES

Grounded theory, phenomenology and ethnography are three approaches used in qualitative research. Grounded theory approach is a commonly used qualitative method in the social sciences to inductively generate or discover a theory out of the data. 9 Phenomenology and ethnography are more commonly used qualitative approaches in health care and will be highlighted below.

PHENOMENOLOGY

One of the major strengths of qualitative research is its emphasis upon understanding the phenomenon of interest holistically and in its context. The term phenomenology is popular and widely embraced, but its meaning has become confusing and faint. Different researchers refer to phenomenology differently. It can refer to an inquiry paradigm, an interpretive theory, a philosophy, an analytical perspective, a major qualitative research tradition or a research method framework. 12

In spite of the differences, all of these approaches share the focus of phenomenology, which is exploring how human beings make sense of experience and the meaning they give to these experiences. Phenomenology is being used in the social and human sciences including sociology, education, psychology, nursing and health sciences. 9

Phenomenologists are interested in how people put together the phenomena they experience in such a way as to make sense of the world and develop a worldview. They assume commonality in human experience and focus on meaning-making as the essence of human experience. The essence is the core meaning mutually understood through a phenomenon commonly experienced. 12 The phenomenon under study may be emotions, relationships, a programme, an organisation or a culture. 12 Bracketing is one of the central ideas in phenomenology. It means that the researcher has to set aside all of his prejudgments and his previous experience about the phenomena and approach the field with an open mind, imagination and intuition. Although important, bracketing is often said to be a difficult task. 9

Patton 12 describes the difference between conducting a phenomenological study and using a phenomenological perspective to a study. He argues that, “one can employ a general phenomenological perspective to elucidate the importance of using methods that capture people’s experience of the world without conducting a phenomenological study that focuses on the essence of shared experience”.

ETHNOGRAPHY

In ethnography, the researcher studies the structure and function of a group of people. An example of a structure or configuration is the kinship, while the function refers to patterns of relationships affecting and regulating behaviour. 9 The aim of ethnographic studies is to give a holistic picture of the social group studied, attempting to describe aspects of the cultural and social system of that particular group. These aspects could be the group history, religion, economy, politics or environment.

Data collection methods vary in ethnographic studies with observation and interviews being the most popular methods. Although some authors expressed concern that anthropological methods may be misused or applied superficially by the medical profession, 19 others, however, expressed the need for acknowledging and incorporating ethnographic methods in health care research. 20 Savage 19 explains that today the term ethnography can be applied to any small-scale social research carried out in everyday settings and uses several methods evolving in design and focusing on an individual’s meanings and explanations. In health care, ethnography has been used in topics related to health beliefs and practices, allowing these issues to be viewed in the context in which they occur and therefore helping broaden the understanding of behaviours related to health and illness. 20

In addition, there has been an increase in the amount of cross-cultural research and a change in the form of this research. Recently, more short-term ethnographic and cross-cultural studies have been undertaken, for example, studies sponsored by international development agencies or student exchange projects. 12

QUALITATIVE RESEARCH INSTRUMENTS

Qualitative research instruments used for data collection include interviews, observations, and analysis of documents. Interviews are the most common techniques used to gather research information. There are three types of interviews: structured, semi-structured and unstructured, described in some books as structured, informed and guided, respectively. 13

The semi-structured interview is more commonly used in health care-related qualitative research. Such an interview is characteristically based on a flexible topic guide that provides a loose structure of open-ended questions to explore experiences and attitudes. It has the advantage of great flexibility, enabling the researcher to enter new areas and produce richer data. In addition, it helps the researcher to develop a rapport with the informants. Semi-structured interviews elicit people’s own views and descriptions and have the benefit of uncovering issues or concerns that have not been anticipated by the researcher. 6 They are commonly used when the aim is to gain information on the perspectives, understandings and meanings constructed by people regarding the events and experiences of their lives. However, this type of interviewing is claimed to reduce the researcher’s control over the interview situation and take a longer time to conduct and analyse, in addition to the difficulties of the analysis process. 21

In health care, interviews are the appropriate tool to be used if the research is concerned with interpersonal aspects of care or if the available evidence is limited. 6

Another qualitative research instrument that can be used in health care research is the focus group. Focus group interviews have the advantage of being more time efficient as more people can be interviewed for the same amount of time. They also provide a richer source of data. On the other hand, focus group interviews tend to document the ‘public’ rather than the ‘private’ views of the individuals. In addition some people do not interview well in-group situations. 13

THE USE OF THE INTERVIEW GUIDE

Some qualitative researchers are reluctant to plan a design of their study in advance of the data collection. They argue that the phenomenon studied must first be discovered and they describe their design as emergent. However, increasingly more qualitative researchers appear ready to define a research question and develop an interview guide prior to starting the data collection. 11 Patton defines an interview guide as a series of topics or broad interview questions which the researcher is free to explore and probe with the interviewee. 12 The advantage of an interview guide is that it helps the interviewer pursue the same basic lines of inquiry with each person interviewed and manage the interviews in a more systematic and comprehensive way. The findings of earlier work are increasingly being used as a facilitator for further research. However, concepts drawn from earlier work are supposed to be held lightly and to be subject to reformulation or rejection by the researcher especially as the study goes on and the research progresses. 11 The extent to which such a flexibility of design is important will vary depending on the topic and the aim of the study.

Sampling strategies in qualitative research are largely determined by the purpose of the study. Statistical representativeness is not considered as a prime requirement in qualitative research and is not normally sought. Furthermore, qualitative data collection is more time consuming and expensive, which makes the use of a probability sample impractical. 6 The aim of sampling in qualitative research is to identify specific groups of people who hold characteristics or live in circumstances relevant to the phenomena being studied. In this way, identified informants are expected to enable enriched exploration of attitudes and aspects of behaviour relevant to the research. 10 Two types of samples used in qualitative research, maximum variation and homogenous samples, are explained below.

According to Patton, 12 maximum variation sampling is where the researcher attempts to study a phenomenon by seeking out settings or persons that represent the greatest differences in that phenomenon. A maximum variation sample documents diverse variations and identifies important common patterns by representing diverse cases to develop fully multiple perspectives about the cases. 9 This means that the participants are sampled based on particular predetermined criteria in order to cover a range of constituencies, such as different age, cultural background or class. 6

Similarly, the researcher can select the setting of the data collection on the basis that it is sufficiently similar to other settings in which generalisation is sought. This way the researcher is demonstrating the possibility that the setting studied is representative of the population studied. 2

In homogeneous sampling, the researcher chooses a small homogenous sample with the purpose of describing some particular subgroups in depth. 12

The sample size in qualitative research is not determined by fixed rules, but by factors such as the depth and duration of the interview and what is feasible for a single interviewer. 22 Although it is theoretically possible to carry out qualitative research on large samples, qualitative researchers find themselves obliged by time and resource limits to trade breadth for depth. 11 The sample size for interview studies is usually much smaller than those of a quantitative research, usually not exceeding 50 participants, although this can vary with the research question asked. 6 Patton 12 states, “there are no rules for sample size in qualitative inquiry”. In other words, sample size depends on the aim of the study and what is possible, given the time and resources available.

ANALYSING QUALITATIVE RESEARCH

Although there are plenty of guidelines for analysing qualitative research, applying these guidelines requires judgment and creativity because each qualitative study is unique. 12 A researcher might also be confused by the different terms used by qualitative researchers when describing analysis. Analysis might be described as interpretation, making sense of data, or transforming data. Analysis is sometimes presented to indicate different procedures based on language, theory or what is described as interpretive/descriptive analysis. 11 However, overlap can take place between these different methods and a researcher might decide to use a method of analysis that is based on language, such as symbolic interactionist, while using grounded theory to develop a theory at the same time. Most of the analytical approaches to qualitative research in health care are ‘generic’ and are not labelled within one of the specific traditions of qualitative research. A common approach in most of these studies is general and inductive in nature, but does not comply with the very systematic and rigorous inductive approach of grounded theory. In addition, it has been described that many researchers use a simple two-level analysis scheme followed by a more specific level. This means that the researcher can initiate the analysis based on the conceptual framework used in order to produce more inductive data, and the coding moves from the descriptive to the more interpretative and inferential codes. 5

COMPUTER USE IN QUALITATIVE DATA ANALYSIS

Qualitative research studies typically produce very large amount of data that needs to be managed efficiently. Computer packages can improve the efficiency of data management. 11 Computer programs provide a way of storing and retrieving material. They are therefore useful in locating cases, statements, phrases or even words, thereby replacing the tedious and time-consuming process of “cutting and pasting” and “colour coding”. The use of computer packages, however, is claimed to distance the analyst from the data, 11 and may take the place of a close and careful analysis. Using a computer programme can lead to quantitative analysis instead of qualitative, for example, counting occurrences, giving more weight to more frequent events, and ignoring isolated incidences. 23 In addition, computer programmes are said to fix and label categories during the analysis process and the researcher may be reluctant to change these categories. 9 Furthermore, the researcher is required to learn the computer programme, which may add to the time and effort he or she will need to spend on the research project. The researcher also has to be aware of the limitations of computer programmes. While computer packages can help with the intensive process of analysis and the management of large data sets, they are not a substitute for “immersion” in the data, and thorough knowledge that can enable the researcher to make comparisons, identify patterns and develop interpretations. 6 There are different packages available: Ethnograph, Atlas and NUD.IST are the mostly used. QSR NVivo is a new product developed by the makers of NUD.IST and is user-friendlier, more suitable for individual research projects and more visually attractive than previous packages.

THE ROLE OF THE RESEARCHER IN QUALITATIVE RESEARCH

Patton 12 states that, “the human element in qualitative research is both its strength and weakness”. It is considered a point of strength because it allows human insight and experience to develop new understandings of the world, and a point of weakness because it depends heavily on the researcher’s skills, creativity, training and intellect. Qualitative methods depend on both critical and creative thinking and the balance between the two in conducting the study and interpreting its results. The role of the researcher is approached differently according to the type of research tradition used. A phenomenologist researcher is required to bracket his/her own assumptions when collecting data. On the other hand, in an ethnographic study, the effect of the researcher on the interview and the interaction is seen as inevitable and important in shaping the results of the study.

Although practising clinicians routinely interview patients during their clinical work, interviewing is a well-established technique in sociology and related disciplines. One of the differences between clinical and research-aimed interviews lies in their different purposes. The usual aim of the clinical interview is to fit the patient’s problem into the appropriate medical category for diagnosis and management. On the other hand, the aim of a qualitative research interview is to discover the interviewee’s own meaning and avoid prior assumptions and preset categories. 22 Having said that, there are general skills in clinical interviewing that can be useful, such as listening and observation. A good level of self-awareness is necessary in the researcher in order to reduce possible biases.

Researchers in qualitative research need to consider how they are perceived by interviewees and the effect of features related to the researcher, such as class, race, and sex on the interview. This question is more important if the interviewee knows that the interviewer is a doctor. It has been described that a patient, or someone who is likely to be become one, may give what he or she thinks is a desirable response, thinking that the doctor will be pleased.

RIGOUR IN QUALITATIVE RESEARCH

Health field research is generally quantitative and based on biomedical traditions and experimental methods. In this field, qualitative research is criticized for being subject to researcher bias and for lacking reproducibility and generalisability. 10 Researchers presenting their qualitative work in health-related research are partly responsible for this view. Many qualitative researchers neglect the importance of giving an adequate description of their theoretical concepts and methods used in their research. A systematic research method is also essential when conducting qualitative research. Rigour in qualitative research includes procedures taken at different stages of the research process including during data collection and analysis. Several procedures have been described to increase rigour in qualitative research. For example, triangulation is commonly used as a way of validating of data.

TRIANGULATION

In triangulation, the researcher uses multiple methods, sources, researchers or theories to provide evidence that strengthens his or her study. Triangulation provides different ways of looking at the same phenomenon and adds credibility and confidence in the conclusions drawn from the study. There are two main types of triangulation, triangulation of sources and analyst triangulation. Patton 12 defines triangulation of sources as “checking out the consistency of different data sources within the same method”. When using this type of triangulation, the researcher compares the perspectives of people from different points of view. For example, studies in programme evaluation might compare the views of staff, clients or funding bodies. 12 Studies in health care have used this method of verification to study the accounts of doctors, patients, and managers in order to identify similarities and differences in views. An example is the study of patients’ versus doctors’ agendas in general practice. 23 Both similarities and differences from different sources, when given reasonable explanation, could contribute significantly to the credibility of the findings. Triangulation with multiple analysts can also be used as a method of verification. It is defined as “having two or more persons independently analyse the same qualitative data and compare their findings”. 12

QUALITATIVE RESEARCH IN HEALTH CARE MANAGEMENT

Recently, there has been a greater acceptance of the qualitative approach, even as a stand-alone method, in health care research. Institutions that control funding for medical research have developed ethical guidelines for assessing qualitative studies which indicates formal acceptance of this form of research within an area previously dominated by quantitative methods. 13 More qualitative research articles are published in health-related journals, in addition to a new qualitative research journal (Qualitative Health Research).

Quality of health care is one of the areas where qualitative methods can be used. The concept of quality in health care is multidimensional and multifaceted and some of the questions asked related to the quality of care or services may not be acquiescent to quantitative methods. 6 Qualitative research offers a variety of methods to be used for identifying what is really important to both patients and carers. It can also be used to identify and detect obstacles to change and the reasons why improvement does not occur. 6 It is therefore an essential component of health services research because it enables us to reach areas not amenable to quantitative research, for example, lay and professional health beliefs. In addition, qualitative description can be a prerequisite of quantitative research, particularly in areas that have received little previous investigation.

Qualitative research is widely used to study issues related to doctor-patient interaction especially in general practice. Studies concerning patients’ versus doctors’ agendas in general practice and general practitioners perceptions of effective health care are examples. 23 , 24 Recently there have been more studies concentrating on patients’ own perceptions and views regarding their health and health care services, for example a study on women’s views on the impact of operative delivery in the second stage of labour. 25 Another example is the study on middle-aged person’s experience of living with severe heart failure. 26

Another area where qualitative research is being used in health care is to identify obstacles and barriers to practice change by exploring the reasons behind certain behaviours. A good example of this is the study of patients’ decisions about whether or not to take anti-hypertensive drugs. 27 There are similar studies on issues such as the use of antibiotics in general practice and patient compliance.

In addition to issues related to the patients’ perception, some qualitative studies concentrated on factors fostering the doctor’s motivation and the effect of doctors’ social life and culture, in addition to issues related to the doctor’s own health. Examples are the study by Dumelow et al. 28 on the relation between a career and family life for English hospital consultants. Another example is a study aimed at exploring general practitioners’ perceptions of the effects of their profession and training on their attitudes to illness in themselves and colleagues. 29

Qualitative work can help in identifying cultural and social factors that affect health care positively or negatively. Such information can be helpful in improving service delivery. 6 Studies on patients from ethnic minorities have identified administrative and language barriers that affected health care and shed light on some of the beliefs and behaviours of these patients that might have affected help seeking and compliance. Good examples are the studies by Bush et al. 30 exploring the influences on smoking in Bangladeshi and Pakistani adults in the UK, and the multi-centre cross-cultural postnatal depression study. 31

There has been an increasing interest and use of qualitative research methods in primary health care and general practice articles. Britten 32 states that “the nature of general practice is such that a variety of research methods are needed to explore all its intricacies” He adds that qualitative methods can enrich research in general practice by opening up areas not amenable to quantitative methods, topics such as patient satisfaction, doctor-patient interaction, in addition to identifying and explaining attitudes, beliefs and behaviour. In addition, qualitative research has been used in the assessment of new technology methods used in health care. For example, the studies on the implementation of the National Health System information technology programme in the UK. 11 , 33

Qualitative research methods are receiving an increasing recognition in health care related research. The use of qualitative research in health care enables researchers to answer questions that may not be easily answered by quantitative methods. Moreover, it seeks to understand the phenomenon under study in the context of the culture or the setting in which it has been studied, therefore, aiding in the development of new research instruments, such as questionnaires that are more culturally acceptable. However, because health care related research has, for decades, been based on quantitative methods, the introduction of a new method requires researchers in health care who attempt to use it, to have a thorough understanding of its theoretical basis, methodology and evaluation techniques.

Acknowledgments

I would like to thank Sultan Qaboos University, Oman, for granting me a scholarship to do my PhD at the University of Nottingham, UK. I am also grateful to my PhD supervisor, Dr Margaret Oates, for her guidance and support.

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Publications
Account settings
My Bibliography
Collections
Citation manager

Save citation to file

Email citation, add to collections.

Create a new collection
Add to an existing collection

Add to My Bibliography

Your saved search, create a file for external citation management software, your rss feed.

Search in PubMed
Search in NLM Catalog
Add to Search

Qualitative Methods in Health Care Research

Affiliations.

1 School of Nursing and Midwifery, Royal College of Surgeons Ireland - Bahrain (RCSI Bahrain), Al Sayh Muharraq Governorate, Bahrain.
2 Department of Mental Health Nursing, Manipal College of Nursing Manipal, Manipal Academy of Higher Education, Manipal, Karnataka, India.
3 Department of OBG Nursing, Manipal College of Nursing Manipal, Manipal Academy of Higher Education, Manipal, Karnataka, India.
4 School of Nursing, MGH Institute of Health Professions, Boston, USA.
5 Department of Child Health Nursing, Manipal College of Nursing Manipal, Manipal Academy of Higher Education, Manipal, Karnataka, India.
PMID: 34084317
PMCID: PMC8106287
DOI: 10.4103/ijpvm.IJPVM_321_19

Healthcare research is a systematic inquiry intended to generate robust evidence about important issues in the fields of medicine and healthcare. Qualitative research has ample possibilities within the arena of healthcare research. This article aims to inform healthcare professionals regarding qualitative research, its significance, and applicability in the field of healthcare. A wide variety of phenomena that cannot be explained using the quantitative approach can be explored and conveyed using a qualitative method. The major types of qualitative research designs are narrative research, phenomenological research, grounded theory research, ethnographic research, historical research, and case study research. The greatest strength of the qualitative research approach lies in the richness and depth of the healthcare exploration and description it makes. In health research, these methods are considered as the most humanistic and person-centered way of discovering and uncovering thoughts and actions of human beings.

Keywords: Ethnography; grounded theory; qualitative research; research design.

PubMed Disclaimer

Conflict of interest statement

There are no conflicts of interest.

Publication types

Search in MeSH

LinkOut - more resources

Full text sources.

Europe PubMed Central
Ovid Technologies, Inc.
PubMed Central
Citation Manager

NCBI Literature Resources

MeSH PMC Bookshelf Disclaimer

The PubMed wordmark and PubMed logo are registered trademarks of the U.S. Department of Health and Human Services (HHS). Unauthorized use of these marks is strictly prohibited.

Open access
Published: 13 December 2018

Using qualitative Health Research methods to improve patient and public involvement and engagement in research

Danielle E. Rolfe 1 ,
Vivian R. Ramsden 2 ,
Davina Banner 3 &
Ian D. Graham 1

Research Involvement and Engagement volume 4 , Article number: 49 ( 2018 ) Cite this article

44k Accesses

65 Citations

23 Altmetric

Metrics details

Plain English summary

Patient engagement (or patient and public involvement) in health research is becoming a requirement for many health research funders, yet many researchers have little or no experience in engaging patients as partners as opposed to research subjects. Additionally, many patients have no experience providing input on the research design or acting as a decision-making partner on a research team. Several potential risks exist when patient engagement is done poorly, despite best intentions. Some of these risks are that: (1) patients’ involvement is merely tokenism (patients are involved but their suggestions have little influence on how research is conducted); (2) engaged patients do not represent the diversity of people affected by the research; and, (3) research outcomes lack relevance to patients’ lives and experiences.

Qualitative health research (the collection and systematic analysis of non-quantitative data about peoples’ experiences of health or illness and the healthcare system) offers several approaches that can help to mitigate these risks. Several qualitative health research methods, when done well, can help research teams to: (1) accurately incorporate patients’ perspectives and experiences into the design and conduct of research; (2) engage diverse patient perspectives; and, (3) treat patients as equal and ongoing partners on the research team.

This commentary presents several established qualitative health research methods that are relevant to patient engagement in research. The hope is that this paper will inspire readers to seek more information about qualitative health research, and consider how its established methods may help improve the quality and ethical conduct of patient engagement for health research.

Research funders in several countries have posited a new vision for research that involves patients and the public as co-applicants for the funding, and as collaborative partners in decision-making at various stages and/or throughout the research process. Patient engagement (or patient and public involvement) in health research is presented as a more democratic approach that leads to research that is relevant to the lives of the people affected by its outcomes. What is missing from the recent proliferation of resources and publications detailing the practical aspects of patient engagement is a recognition of how existing research methods can inform patient engagement initiatives. Qualitative health research, for example, has established methods of collecting and analyzing non-quantitative data about individuals’ and communities’ lived experiences with health, illness and/or the healthcare system. Included in the paradigm of qualitative health research is participatory health research, which offers approaches to partnering with individuals and communities to design and conduct research that addresses their needs and priorities.

The purpose of this commentary is to explore how qualitative health research methods can inform and support meaningful engagement with patients as partners. Specifically, this paper addresses issues of: rigour (how can patient engagement in research be done well?); representation (are the right patients being engaged?); and, reflexivity (is engagement being done in ways that are meaningful, ethical and equitable?). Various qualitative research methods are presented to increase the rigour found within patient engagement. Approaches to engage more diverse patient perspectives are presented to improve representation beyond the common practice of engaging only one or two patients. Reflexivity, or the practice of identifying and articulating how research processes and outcomes are constructed by the respective personal and professional experiences of researchers and patients, is presented to support the development of authentic, sustainable, equitable and meaningful engagement of patients as partners in health research.

Conclusions

Researchers will need to engage patients as stakeholders in order to satisfy the overlapping mandate in health policy, care and research for engaging patients as partners in decision-making. This paper presents several suggestions to ground patient engagement approaches in established research designs and methods.

Peer Review reports

Patient engagement (or patient and public involvement) in research involves partnering with ‘patients’ (a term more often used in Canada and the US, that is inclusive of individuals, caregivers, and/or members of the public) to facilitate research related to health or healthcare services. Rather than research subjects or participants, patients are engaged as partners in the research process. This partnership is intended to be meaningful and ongoing, from the outset of planning a research project, and/or at various stages throughout the research process. Engagement can include the involvement of patients in defining a research question, identifying appropriate outcomes and methods, collecting and interpreting data, and developing and delivering a knowledge translation strategy [ 1 ].

The concept of engaging non-researchers throughout the research process is not new to participatory health researchers, or integrated knowledge translation researchers, as the latter involves ongoing collaboration with clinicians, health planners and policy makers throughout the research process in order to generate new knowledge [ 2 , 3 ]. Patients, however, are less frequently included as partners on health research teams, or as knowledge users in integrated knowledge translation research teams compared to clinicians, healthcare managers and policy-makers, as these individuals are perceived as having “the authority to invoke change in the practice or policy setting.” (p.2) [ 2 ] Recent requirements for patient engagement by health research funders [ 4 , 5 , 6 ], ,and mandates by most healthcare planners and organizations to engage patients in healthcare improvement initiatives, suggest that it would be prudent for integrated knowledge translation (and indeed all) health researchers to begin engaging patients as knowledge users in many, if not all, of their research projects.

Training and tools for patient engagement are being developed and implemented in Canada via the Canadian Institutes for Health Research (CIHR) Strategy for Patient Oriented Research (SPOR) initiative, in the US via Patient Centered Outcomes Research Institute (PCORI), and very practical resources are already available from the UK’s more established INVOLVE Advisory Group [ 5 , 6 , 7 ]. What is seldom provided by these ‘get started’ guides, however, are rigorous methods and evidence-based approaches to engaging diverse patient perspectives, and ensuring that their experiences, values and advice are appropriately incorporated into the research process.

The purpose of this commentary is to stimulate readers’ further discussion and inquiry into qualitative health research methods as a means of fostering the more meaningfully engagement of patients as partners for research. Specifically, this paper will address issues of: rigour (how do we know that the interpretation of patients’ perspectives has been done well and is applicable to other patients?); representation (are multiple and diverse patient perspectives being sought?); and, reflexivity (is engagement being done ethically and equitably?). This commentary alone is insufficient to guide researchers and patient partners to use the methods presented as part of their patient engagement efforts. However, with increased understanding of these approaches and perhaps guidance from experienced qualitative health researchers, integrated knowledge translation and health researchers alike may be better prepared to engage patients in a meaningful way in research that has the potential to improve health and healthcare experiences and outcomes.

What can be learned from methods utilized in qualitative health research?

There is wide variation in researchers’ and healthcare providers’ openness to engaging patients [ 8 ]. Often, the patients that are engaged are a select group of individuals known to the research team, sometimes do not reflect the target population of the research, are involved at a consultative rather than a partnership level, and are more likely to be involved in the planning rather than the dissemination of research [ 9 , 10 , 11 ]. As a result, patient engagement can be seen as tokenistic and the antithesis of the intention of most patient engagement initiatives, which is to have patients’ diverse experiences and perspectives help to shape what and how research is done. The principles, values, and practices of qualitative health research (e.g., relativism, social equity, inductive reasoning) have rich epistemological traditions that align with the conceptual and practical spirit of patient engagement. It is beyond the scope of this commentary, however, to describe in detail the qualitative research paradigm, and readers are encouraged to gain greater knowledge of this topic via relevant courses and texts. Nevertheless, several qualitative research considerations and methods can be applied to the practice of patient engagement, and the following sections describe three of these: rigour, representation and reflexivity.

Rigour: Interpreting and incorporating patients’ experiences into the design and conduct of research

When patient engagement strategies go beyond the inclusion of a few patient partners on the research team, for example, by using focus groups, interviews, community forums, or other methods of seeking input from a broad range of patient perspectives, the diversity of patients’ experiences or perspectives may be a challenge to quickly draw conclusions from in order to make decisions about the study design. To make these decisions, members of the research team (which should include patient partners) may discuss what they heard about patients’ perspectives and suggestions, and then unsystematically incorporate these suggestions, or they may take a vote, try to achieve consensus, implement a Delphi technique [ 12 ], or use another approach designed specifically for patient engagement like the James Lind Alliance technique for priority setting [ 13 ]. Although the information gathered from patients is not data (and indeed would require ethical review to be used as such), a number of qualitative research practices designed to increase rigour can be employed to help ensure that the interpretation and incorporation of patients’ experiences and perspectives has been done systematically and could be reproduced [ 14 ]. These practices include member checking , dense description , and constant comparative analysis . To borrow key descriptors of rigour from qualitative research, these techniques improve “credibility” (i.e., accurate representations of patients’ experiences and preferences that are likely to be understood or recognized by other patients in similar situations – known in quantitative research as internal validity), and “transferability” (or the ability to apply what was found among a group of engaged patients to other patients in similar contexts – known in quantitative research as external validity) [ 15 ].

Member checking

Member checking in qualitative research involves “taking ideas back to the research participants for their confirmation” (p. 111) [ 16 ]. The objective of member checking is to ensure that a researcher’s interpretation of the data (whether a single interview with a participant, or after analyzing several interviews with participants) accurately reflects the participants’ intended meaning (in the case of a member check with a single participant about their interview), or their lived experience (in the case of sharing an overall finding about several individuals with one or more participants) [ 16 ]. For research involving patient engagement, member checking can be utilized to follow-up with patients who may have been engaged at one or only a few time points, or on an on-going basis with patient partners. A summary of what was understood and what decisions were made based on patients’ recommendations could be used to initiate this discussion and followed up with questions such as, “have I understood correctly what you intended to communicate to me?” or “do you see yourself or your experience(s) reflected in these findings or suggestions for the design of the study?”

Dense description

As with quantitative research, detailed information about qualitative research methods and study participants is needed to enable other researchers to understand the context and focus of the research and to establish how these findings relate more broadly. This helps researchers to not only potentially repeat the study, but to extend its findings to similar participants in similar contexts. Dense description provides details of the social, demographic and health profile of participants (e.g., gender, education, health conditions, etc.), as well as the setting and context of their experiences (i.e., where they live, what access to healthcare they have). In this way, dense description improves the transferability of study findings to similar individuals in similar situations [ 15 ]. To date, most studies involving patient engagement provide limited details about their engagement processes and who was engaged [ 17 ]. This omission may be done intentionally (e.g., to protect the privacy of engaged patients, particularly those with stigmatizing health conditions), or as a practical constraint such as publication word limits. Nonetheless, reporting of patient engagement using some aspects of dense description of participants (as appropriate), the ways that they were engaged, and recommendations that emanated from engaged patients can also contribute to greater transferability and understanding of how patient engagement influenced the design of a research study.

Constant comparative analysis

Constant comparative analysis is a method commonly used in grounded theory qualitative research [ 18 ]. Put simply, the understanding of a phenomenon or experience that a researcher acquires through engaging with participants is constantly redeveloped and refined based on subsequent participant interactions. This process of adapting to new information in order to make it more relevant is similar to processes used in rapid cycle evaluation during implementation research [ 19 ]. This method can be usefully adapted and applied to research involving ongoing collaboration and partnership with several engaged patient partners, and/or engagement strategies that seek the perspectives of many patients at various points in the research process. For example, if, in addition to having ongoing patient partners, a larger group of patients provides input and advice (e.g., a steering or advisory committee) at different stages in the research process, their input may result in multiple course corrections during the design and conduct of the research processes to incorporate their suggestions. These suggestions may result in refinement of earlier decisions made about study design or conduct, and as such, the research process becomes more iterative rather than linear. In this way, engaged patients and patient partners are able to provide their input and experience to improve each step of the research process from formulating an appropriate research question or objective, determining best approaches to conducting the research and sharing it with those most affected by the outcomes.

Representation: Gathering diverse perspectives to design relevant and appropriate research studies

The intention of engaging patients is to have their lived experience of health care or a health condition contribute to the optimization of a research project design [ 20 ]. Development of a meaningful and sustainable relationship with patient partners requires considerable time, a demonstrated commitment to partnership by both the patient partners and the researcher(s), resources to facilitate patient partners’ engagement, and often, an individual designated to support the development of this relationship [ 17 , 21 ]. This may lead some research teams to sustain this relationship with only one or two patients who are often previously known to the research team [ 17 ]. The limitation of this approach is that the experiences of these one or two individuals may not adequately reflect the diverse perspectives of patients that may be affected by the research or its outcomes. The notion of gaining ‘ the patient perspective’ from a single or only a few individuals has already been problematized [ 22 , 23 ]. To be sure, the engagement of a single patient is better than none at all, but the engagement of a broader and diverse population of patients should be considered to better inform the research design, and to help prevent further perpetuation of health disparities. Key issues to be considered include (1) how engagement can be made accessible to patients from diverse backgrounds, and (2) which engagement strategies (e.g., ranging from a community information forum to full partnership on the research team) are most appropriate to reach the target population [ 24 ].

Making engagement accessible

Expecting patient partner(s) to attend regular research team meetings held during working hours in a boardroom setting in a hospital, research institute or university limits the participation of many individuals. To support the participation and diversity of engaged patients, effort should be made to increase the accessibility and emotional safety of engagement initiatives [ 25 ]. A budget must be allocated for patient partners’ transportation, childcare or caregiving support, remuneration for time or time taken off work and, at the very least, covering expenses related to their engagement. Another consideration that is often made by qualitative health researchers is whether brief counselling support can be provided to patients should the sharing of their experiences result in emotional distress. There are some resources that can help with planning for costs [ 26 ], including an online cost calculator [ 27 ].

Engagement strategies

Patient partners can be coached to consider the needs and experiences of people unlike them, but there are other methods of engagement that can help to gain a more fulsome perspective of what is likely a diverse patient population that is the focus of the research study. In qualitative health research, this is known as purposeful or purposive sampling: finding people who can provide information-rich descriptions of the phenomenon under study [ 28 ]. Engagement may require different approaches (e.g., deliberative group processes, community forums, focus groups, and patient partners on the research team), at different times in the research process to reach different individuals or populations (e.g., marginalized patients, or patients or caregivers experiencing illnesses that inhibit their ability to maintain an ongoing relationship with the research team). Engagement strategies of different forms at different times may be required. For example, ongoing engagement may occur with patient partners who are members of the research team (e.g., co-applicants on a research grant), and intermittent engagement may be sought from other patients through other methods that may be more time-limited or accessible to a diverse population of patients (e.g., a one-time focus group, community forum, or ongoing online discussion) to address issues that may arise during various stages of the research or dissemination processes. The result of this approach is that patients are not only consulted or involved (one-time or low commitment methods), but are also members of the research team and have the ability to help make decisions about the research being undertaken.

Engagement can generate a wealth of information from very diverse perspectives. Each iteration of engagement may yield new information. Knowing when enough information has been gathered to make decisions with the research team (that includes patient partners) about how the research may be designed or conducted can be challenging. One approach from qualitative research that can be adapted for patient engagement initiatives is theoretical saturation [ 29 ], or “the point in analysis when…further data gathering and analysis add little new to the conceptualization, though variations can always be discovered.” (p. 263) [ 18 ]. That is, a one-time engagement strategy (e.g., a discussion with a single patient partner) may be insufficient to acquire the diverse perspectives of the individuals that will be affected by the research or its outcomes. Additional strategies (e.g., focus groups or interviews with several individuals) may be initiated until many patients identify similar issues or recommendations.

Engagement approaches should also consider: how patients are initially engaged (e.g., through known or new networks, posted notices, telephone or in-person recruitment) and whether involvement has been offered widely enough to garner multiple perspectives; how patients’ experiences are shared (e.g., community forums, formal meetings, individual or group discussions) and whether facilitation enables broad participation; and finally, how patients’ participation and experiences are incorporated into the research planning and design, with patients having equal decision-making capacity to other research team members. Several publications and tools are available that can help guide researchers who are new to processes of engaging patients in research [ 24 , 30 , 31 , 32 , 33 , 34 ], but unfortunately few address how to evaluate the effectiveness of engagement [ 35 ].

Reflexivity: Ensuring meaningful and authentic engagement

In qualitative research, reflexivity is an ongoing process of “the researcher’s scrutiny of his or her research experience, decisions, and interpretations in ways that bring the researcher into the process and allow the reader to assess how and to what extent the researcher’s interests, positions, and assumptions influenced inquiry. A reflexive stance informs how the researcher conducts his or her research, relates to the research participants, and represents them in written reports,” (p.188–189) [ 16 ]. The concept of reflexivity can be applied to research involving patient engagement by continually and explicitly considering how decisions about the research study were made. All members of the research team must consider (and perhaps discuss): (1) how patient partners are invited to participate in research planning and decision-making; (2) how their input is received relative to other team members (i.e., do their suggestions garner the same respect as researchers’ or providers’?); and, (3) whether engaged patients or patient partners feel sufficiently safe, able and respected to share their experiences, preferences and recommendations with the research team.

Ideally, reflexivity becomes a practice within the research team and may be operationalized through regular check-ins with patients and researchers about their comfort in sharing their views, and whether they feel that their views have been considered and taken onboard. Power dynamics should also be considered during patient engagement initiatives. For example, reflecting on how community forums, focus groups or interviews are to be facilitated, including a consideration of who is at the table/who is not, who speaks/who does not, whose suggestions are implemented/whose are not? Reflexivity can be practiced through informal discussions, or using methods that may allow more candid responses by engaged patients (e.g., anonymous online survey or feedback forms). At the very least, if these practices were not conducted throughout the research process, the research team (including patient partners) should endeavor to reflect upon team dynamics and consider how these may have contributed to the research design or outcomes. For example, were physicians and researchers seen as experts and patients felt less welcome or able to share their personal experiences? Were patients only engaged by telephone rather than in-person and did this influence their ability to easily engage in decision-making? Reflexive practices may be usefully supplemented by formal evaluation of the process of patient engagement from the perspective of patients and other research team members [ 36 , 37 ], and some tools are available to do this [ 35 ].

A note about language

One way to address the team dynamic between researchers, professional knowledge users (such as clinicians or health policy planners) and patients is to consider the language used to engage with patients in the planning of patient engagement strategies. That is, the term ‘patient engagement’ is a construction of an individual’s identity that exists only within the healthcare setting, and in the context of a patient-provider dynamic. This term does not consider how people make decisions about their health and healthcare within a broader context of their family, community, and culture [ 22 , 38 ]. This may be why research communities in some countries (e.g., the United Kingdom) use the term ‘patient and public involvement’. Additionally, research that involves communities defined by geography, shared experiences, cultural or ethnic identity, as is the case with participatory health research, may refer to ‘community engagement.’ Regardless of the term used, partnerships with patients, the public, or with communities need to be conceived instead as person-to-person interactions between researchers and individuals who are most affected by the research. Discussions with engaged patients should be conducted early on to determine how to best describe their role on the team or during engagement initiatives (e.g., as patient partners, community members, or people with lived experience).

Tokenism is the “difference between…the empty ritual of participation and having the real power needed to affect the outcome,” (p.2) [ 39 ]. Ongoing reflection on the power dynamic between researchers and engaged patients, a central tenet of critical qualitative health research [ 40 , 41 ], can increase the likelihood that engagement involves equitable processes and will result in meaningful engagement experiences by patients rather than tokenism [ 36 , 42 ]. Patient engagement initiatives should strive for “partnership” amongst all team members, and not just reflect a patient-clinician or researcher-subject dynamic [ 43 ]. To develop meaningful, authentic and sustainable relationships with engaged patients, methods used for participatory, action or community-based research (approaches that fall under the paradigm of qualitative inquiry) provide detailed experiential guidance [ 44 ]. For example, a realist review of community-based participatory research projects reported that gaining and maintaining trust with patient or community partners, although time-intensive, is foundational to equitable and sustainable partnerships that benefit communities and individuals [ 45 , 46 ]. Additionally, Chapter Nine of the Canadian Tri-Council Policy Statement on Research involving Humans, which has to date been applied to research involving First Nations, Inuit and, Métis Peoples in Canada [ 47 ], provides useful information and direction that can be applied to working with patient partners on research [ 48 ].

Authentic patient engagement should include their involvement at all stages of the research process [ 49 , 50 ], but this is often not the case [ 10 ]. .Since patient partners are not research subjects or participants, their engagement does not (usually) require ethics approval, and they can be engaged as partners as early as during the submission of grant applications [ 49 ]. This early engagement helps to incorporate patients’ perspectives into the proposed research before the project is wedded to particular objectives, outcomes and methods, and can also serve to allocate needed resources to support patient engagement (including remuneration for patient partners’ time). Training in research for patient partners can also support their meaningful engagement by increasing their ability to fully engage in decision-making with other members of the research team [ 51 , 52 ]. Patient partners may also thrive in co-leading the dissemination of findings to healthcare providers, researchers, patients or communities most affected by the research [ 53 ].

Patient engagement has gained increasing popularity, but many research organizations are still at the early stages of developing approaches and methods, many of which are based on experience rather than evidence. As health researchers and members of the public will increasingly need to partner for research to satisfy the overlapping mandate of patient engagement in health policy, healthcare and research, the qualitative research methods highlighted in this commentary provide some suggestions to foster rigorous, meaningful and sustained engagement initiatives while addressing broader issues of power and representation. By incorporating evidence-based methods of gathering and learning from multiple and diverse patient perspectives, we will hopefully conduct better patient engaged research, live out the democratic ideals of patient engagement, and ultimately contribute to research that is more relevant to the lives of patients; as well as, contribute to the improved delivery of healthcare services. In addition to the references provided in this paper, readers are encouraged to learn more about the meaningful engagement of patients in research from several key texts [ 54 , 55 , 56 ].

Abbreviations

Canadian Institutes for Health Research

Patient Centered Outcomes Research Institute

Strategy for Patient Oriented Research

Canadian Institutes of Health Research. Strategy for Patient-Oriented Research. 2014. http://www.cihr-irsc.gc.ca/e/documents/spor_framework-en.pdf . Accessed 27 Sep 2017.

Google Scholar

Kothari A, Wathen CN. Integrated knowledge translation: digging deeper, moving forward. J Epidemiol Community Health. 2017;71:619–23. https://doi.org/10.1136/jech-2016-208490 .

Article PubMed Google Scholar

Gagliardi AR, Berta W, Kothari A, Boyko J, Urquhart R. Integrated knowledge translation (IKT) in health care: a scoping review. Implement Sci. 2016;11:38. https://doi.org/10.1186/s13012-016-0399-1 .

Article PubMed PubMed Central Google Scholar

Canadian Institutes of Health Research. Strategy for Patient-Oriented Research - CIHR. http://www.cihr-irsc.gc.ca/e/41204.html . Accessed 20 Sep 2017.

Patient-Centered Outcomes Research Institute. Patient-Centered Outcomes Research Institute website. https://www.pcori.org/ . Accessed 20 Sep 2017.

National Institute for Health Research. INVOLVE | INVOLVE Supporting public involvement in NHS, public health and social care research. http://www.invo.org.uk/ . Accessed 27 Sep 2017.

Canadian Institutes of Health Research. SPOR SUPPORT Units - CIHR. http://www.cihr-irsc.gc.ca/e/45859.html . Accessed 27 Sep 2017.

Ocloo J, Matthews R. From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Qual Saf. 2016;25:626–32.

Hearld KR, Hearld LR, Hall AG. Engaging patients as partners in research: factors associated with awareness, interest, and engagement as research partners. SAGE open Med. 2017;5:2050312116686709. https://doi.org/10.1177/2050312116686709.

Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14:89. https://doi.org/10.1186/1472-6963-14-89 .

Concannon TW, Fuster M, Saunders T, Patel K, Wong JB, Leslie LK, et al. A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research. J Gen Intern Med. 2014;29:1692–701.

Oostendorp LJM, Durand M-A, Lloyd A, Elwyn G. Measuring organisational readiness for patient engagement (MORE): an international online Delphi consensus study. BMC Health Serv Res. 2015;15:61. https://doi.org/10.1186/s12913-015-0717-3 .

Boddy K, Cowan K, Gibson A, Britten N. Does funded research reflect the priorities of people living with type 1 diabetes? A secondary analysis of research questions. BMJ Open. 2017;7:e016540. https://doi.org/10.1136/bmjopen-2017-016540 .

Mays N, Pope C. Rigour and qualitative research. BMJ Br Med J. 1995;311:109–12.

Article CAS Google Scholar

Krefting L. Rigor in qualitative research: the assessment of trustworthiness. Am J Occup Ther. 1991;45:214–22.

Article CAS PubMed Google Scholar

Charmaz K. Constructing grounded theory : a practical guide through qualitative analysis. London: Sage Publications; 2006.

Wilson P, Mathie E, Keenan J, McNeilly E, Goodman C, Howe A, et al. ReseArch with patient and public invOlvement: a RealisT evaluation – the RAPPORT study. Heal Serv Deliv Res. 2015;3:1–176. https://doi.org/10.3310/hsdr03380 .

Corbin JM, Strauss AL, Strauss AL. Basics of qualitative research : techniques and procedures for developing grounded theory. Thousand Oaks: Sage Publications; 2008.

Keith RE, Crosson JC, O’Malley AS, Cromp D, Taylor EF. Using the consolidated framework for implementation research (CFIR) to produce actionable findings: a rapid-cycle evaluation approach to improving implementation. Implement Sci. 2017;12:15. https://doi.org/10.1186/s13012-017-0550-7 .

Esmail L, Moore E. Evaluating patient and stakeholder engagement in research: moving from theory to practice. J Comp Eff Res. 2015;4:133–45. https://doi.org/10.2217/cer.14.79 .

Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. A systematic review of the impact of patient and public involvement on service users, researchers and communities. Patient. 2014;7:387–95.

Rowland P, McMillan S, McGillicuddy P, Richards J. What is “the patient perspective” in patient engagement programs? Implicit logics and parallels to feminist theories. Heal An Interdiscip J Soc Study Heal Illn Med. 2016. https://doi.org/10.1177/1363459316644494 .

Article Google Scholar

Martin GP. “Ordinary people only”: knowledge, representativeness, and the publics of public participation in healthcare. Sociol Health Illn. 2008;30:35–54. https://doi.org/10.1111/j.1467-9566.2007.01027.x .

Snow B, Tweedie K, Pederson A, Shrestha H, Bachmann L. Patient Engagement: Heard and valued. 2013. http://www.cfhi-fcass.ca/sf-docs/default-source/patient-engagement/awesome_workbook-fraserhealth.pdf . Accessed 24 Jan 2018.

Montesanti SR, Abelson J, Lavis JN, Dunn JR. Enabling the participation of marginalized populations: case studies from a health service organization in Ontario. Canada Health Promot Int. 2017;32(4):636–49. https://doi.org/10.1093/heapro/dav118.

The Change Foundation. Should Money Come into It? A Tool for Deciding Whether to Pay Patient- Engagement Participants. Toronto; 2015. http://www.changefoundation.ca/site/wp-content/uploads/2016/05/Should-money-come-into-it.pdf . Accessed 18 June 2018

INVOLVE. Involvement Cost Calculator | INVOLVE. http://www.invo.org.uk/resource-centre/payment-and-recognition-for-public-involvement/involvement-cost-calculator/ . Accessed 11 Oct 2017.

Patton MQ. Qualitative research and evaluation methods. 3rd ed. Thousand Oaks: Sage Publications; 2002.

Kerr C, Nixon A, Wild D. Assessing and demonstrating data saturation in qualitative inquiry supporting patient-reported outcomes research. Expert Rev Pharmacoecon Outcomes Res. 2010;10(3):269–81. https://doi.org/10.1586/erp.10.30 .

Canadian Institutes of Health Research. CIHR’S Citizen Engagement Handbook. http://www.cihr-irsc.gc.ca/e/documents/ce_handbook_e.pdf . Accessed 18 June 2018.

Elliott J, Heesterbeek S, Lukensmeyer CJ, Slocum N. Participatory and deliberative methods toolkit how to connect with citizens: a practitioner’s manual. King Baudouin Foundation; 2005. https://www.kbs-frb.be/en/Virtual-Library/2006/294864 . Accessed 28 Sep 2017.

Robbins M, Tufte J, Hsu C. Learning to “swim” with the experts: experiences of two patient co-investigators for a project funded by the Patient-Centered Outcomes Research Institute. Perm J. 2016;20:85–8.

PubMed PubMed Central Google Scholar

Gauvin F-P, Abelson J, Lavis JN. Strengthening public and patient engagement in health technology assessment in Ontario. 2014. https://www.mcmasterforum.org/docs/default-source/product-documents/evidence-briefs/public-engagement-in-health-technology-assessement-in-ontario-eb.pdf?sfvrsn=2 . Accessed 18 June 2018.

Abelson J, Montesanti S, Li K, Gauvin F-P, Martin E. Effective strategies for interactive public engagement in the development of healthcare policies and Programs. 2010; https://www.cfhi-fcass.ca/sf-docs/default-source/commissionedresearch-reports/Abelson_EN_FINAL.pdf?sfvrsn=0. . Accessed 16 Nov 2018.

Abelson J. Public and patient engagement evaluation tool (version 1.0), vol. 0; 2015. https://www.fhs.mcmaster.ca/publicandpatientengagement/ppeet_request_form.html ! Accessed 18 June 2018

Johnson DS, Bush MT, Brandzel S, Wernli KJ. The patient voice in research—evolution of a role. Res Involv Engagem. 2016;2:6. https://doi.org/10.1186/s40900-016-0020-4 .

Crocker JC, Boylan AM, Bostock J, Locock L. Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study. Health Expect. 2017;20(3):519–28. https://doi.org/10.1111/hex.12479 .

Renedo A, Marston C. Healthcare professionals’ representations of “patient and public involvement” and creation of “public participant” identities: implications for the development of inclusive and bottom-up community participation initiatives. J Community Appl Soc Psychol. 2011;21:268–80. https://doi.org/10.1002/casp.1092 .

Hahn DL, Hoffmann AE, Felzien M, LeMaster JW, Xu J, Fagnan LJ. Tokenism in patient engagement. Fam Pract. 2017;34(3):290–5. https://doi.org/10.1093/fampra/cmw097.

Hart C, Poole JM, Facey ME, Parsons JA. Holding firm: power, push-Back, and opportunities in navigating the liminal space of critical qualitative Health Research. Qual Health Res. 2017;27:1765–74. https://doi.org/10.1177/1049732317715631 .

Eakin JM. Educating critical qualitative health researchers in the land of the randomized controlled trial. Qual Inq. 2016;22:107–18. https://doi.org/10.1177/1077800415617207 .

Safo S, Cunningham C, Beckman A, Haughton L, Starrels JL. “A place at the table:” a qualitative analysis of community board members’ experiences with academic HIV/AIDS research. BMC Med Res Methodol. 2016;16:80. https://doi.org/10.1186/s12874-016-0181-8 .

Thompson J, Bissell P, Cooper C, Armitage CJ, Barber R, Walker S, et al. Credibility and the “professionalized” lay expert: reflections on the dilemmas and opportunities of public involvement in health research. Heal Interdiscip J Soc Study Heal Illn Med. 2012;16:602–18. https://doi.org/10.1177/1363459312441008 .

Burke JG, Jones J, Yonas M, Guizzetti L, Virata MC, Costlow M, et al. PCOR, CER, and CBPR: alphabet soup or complementary fields of Health Research? Clin Transl Sci. 2013;6:493–6. https://doi.org/10.1111/cts.12064 .

Jagosh J, Bush PL, Salsberg J, Macaulay AC, Greenhalgh T, Wong G, et al. A realist evaluation of community-based participatory research: partnership synergy, trust building and related ripple effects. BMC Public Health. 2015;15:725. https://doi.org/10.1186/s12889-015-1949-1 .

Jagosh J, Macaulay AC, Pluye P, Salsberg J, Bush PL, Henderson J, et al. Uncovering the benefits of participatory research: implications of a realist review for health research and practice. Milbank Q. 2012;90:311–46. https://doi.org/10.1111/j.1468-0009.2012.00665.x .

Government of Canada IAP on RE. TCPS 2 - Chapter 9 Research Involving the First Nations, Inuit and Métis Peoples of Canada. http://www.pre.ethics.gc.ca/eng/policy-politique/initiatives/tcps2-eptc2/chapter9-chapitre9/ . Accessed 16 Oct 2017.

Ramsden VR, Crowe J, Rabbitskin N, Rolfe D, Macaulay A. Authentic engagement, co-creation and action research. In: Goodyear-smith F, Mash B, editors. How to do primary care research. Boca Raton: CRC press, medicine, Taylor & Francis Group; 2019.

Ramsden VR, Salsberg J, Herbert CP, Westfall JM, LeMaster J, Macaulay AC. Patient- and community-oriented research: how is authentic engagement identified in grant applications? Can Fam Physician. 2017;63:74–6.

Woolf SH, Zimmerman E, Haley A, Krist AH. Authentic engagement of patients and communities can transform research, practice, and policy. Health Aff. 2016;35:590–4.

Parkes JH, Pyer M, Wray P, Taylor J. Partners in projects: preparing for public involvement in health and social care research. Health Policy. 2014;117:399–408. https://doi.org/10.1016/j.healthpol.2014.04.014 .

Norman N, Bennett C, Cowart S, Felzien M, Flores M, Flores R, et al. Boot camp translation: a method for building a community of solution. J Am Board Fam Med. 2013;26:254–63. https://doi.org/10.3122/jabfm.2013.03.120253 .

Ramsden VR, Rabbitskin N, Westfall JM, Felzien M, Braden J, Sand J. Is knowledge translation without patient or community engagement flawed. Fam Pract. 2016:1–3.

Denzin NK, Lincoln YS. SAGE Handbook of qualitative research. 3rd ed. Thousand Oaks: Sage Publications; 2005.

Pearce V, Baraitser P, Smith G, Greenhalgh T. Experience-based co-design. In: User involvement in health care. Oxford: Wiley-Blackwell; 2010. p. 28–51. https://doi.org/10.1002/9781444325164.ch3 .

Chapter Google Scholar

Hulatt I, Lowes L. Involving service users in health and social care research: Routledge; 2005. https://doi.org/10.4324/9780203865651.

Book Google Scholar

Download references

Acknowledgements

This paper was drafted in response to a call for concept papers related to integrated knowledge translation issued by the Integrated Knowledge Translation Research Network (CIHR FDN #143237).

This paper was commissioned by the Integrated Knowledge Translation Network (IKTRN). The IKTRN brings together knowledge users and researchers to advance the science and practice of integrated knowledge translation and train the next generation of integrated knowledge translation researchers. Honorariums were provided for completed papers. The IKTRN is funded by a Canadian Institutes of Health Research Foundation Grant (FDN #143247).

Availability of data and materials

Not applicable.

Author information

Authors and affiliations.

School of Epidemiology and Public Health, University of Ottawa, 307D- 600 Peter Morand Crescent, Ottawa, ON, K1G 5Z3, Canada

Danielle E. Rolfe & Ian D. Graham

Department of Academic Family Medicine, University of Saskatchewan, West Winds Primary Health Centre, 3311 Fairlight Drive, Saskatoon, SK, S7M 3Y5, Canada

Vivian R. Ramsden

School of Nursing, University of Northern British Columbia, 3333 University Way, Prince George, BC, V2K4C6, Canada

Davina Banner

You can also search for this author in PubMed Google Scholar

Contributions

DR conceived and drafted this paper. All authors were involved in critiquing and revising the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Danielle E. Rolfe .

Ethics declarations

Ethics approval and consent to participate, consent for publication, competing interests.

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/ ), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated.

Reprints and permissions

About this article

Cite this article.

Rolfe, D.E., Ramsden, V.R., Banner, D. et al. Using qualitative Health Research methods to improve patient and public involvement and engagement in research. Res Involv Engagem 4 , 49 (2018). https://doi.org/10.1186/s40900-018-0129-8

Download citation

Received : 18 June 2018

Accepted : 09 November 2018

Published : 13 December 2018

DOI : https://doi.org/10.1186/s40900-018-0129-8

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

Qualitative methods
Qualitative health research
Patient-oriented research
Integrated knowledge translation
Patient engagement
Patient partners
Patient and public involvement

Research Involvement and Engagement

ISSN: 2056-7529

General enquiries: [email protected]

qualitative research in healthcare settings

IMAGES

Understanding Qualitative Research: An In-Depth Study Guide
The Role of Qualitative Research in Healthcare
Calaméo
Qualitative Research and its Uses in Health Care Industry
(PDF) Qualitative Research in Healthcare: Data Analysis
15 Types of Research Methods (2024)

COMMENTS

Qualitative Research in Healthcare: Necessity and Characteristics
This review examined the characteristics of qualitative research to help researchers select the appropriate qualitative research methodology and identify situations suitable for qualitative research in the healthcare field.
Qualitative Methods in Health Care Research - PMC
Qualitative research studies are being widely acknowledged and recognized in health care practice. This overview illustrates various qualitative methods and shows how these methods can be used to generate evidence that informs clinical practice.
How to use qualitative methods for health and health services ...
Qualitative research is typically not generalisable to a wide population, but it can be particularly useful when designing and targeting a health intervention in a particular context or for a specific population. Good research questions are well-defined, clear and manageable.
Qualitative Research and its Uses in Health Care - PMC
Qualitative research methods are receiving an increasing recognition in health care related research. The use of qualitative research in health care enables researchers to answer questions that may not be easily answered by quantitative methods.
Qualitative Health Research: Sage Journals
Qualitative Health Research (QHR) is a peer-reviewed monthly journal that provides an international, interdisciplinary forum to enhance health care and further the development and understanding of qualitative research in health-care settings. QHR is an … | View full journal description.
Qualitative Methods in Health Care Research - PubMed
This article aims to inform healthcare professionals regarding qualitative research, its significance, and applicability in the field of healthcare. A wide variety of phenomena that cannot be explained using the quantitative approach can be explored and conveyed using a qualitative method.
Using qualitative Health Research methods to improve patient ...
Qualitative health research (the collection and systematic analysis of non-quantitative data about peoples’ experiences of health or illness and the healthcare system) offers several approaches that can help to mitigate these risks.
Qualitative Research in Health Care | Wiley Online Books
Qualitative Research in Health Care, 4th Edition looks at the interface between qualitative and quantitative research in primary mixed method studies, case study research, and secondary analysis and evidence synthesis.
Qualitative Research in Health Care | Wiley Online Books
This fully revised and updated edition of Qualitative Research in Health Care offers a clear and accessible introduction to conducting and interpreting qualitative research, incorporating new examples, references and chapters relevant for a comprehensive introduction to the subject. New chapters and references include: Show all. Table of Contents.
The value of qualitative methods to public health research ...
Introduction. In this article, we briefly review the role and use of qualitative methods in public health research and its significance for research, policy and practice. Historically, public health research has been largely dependent on quantitative research rooted in medical science.