Updates & Features
Listening to the Patient – Patient Focus Groups as a Strategy to Engage with Patients
PainSolve Editorial Team
The importance of engaging with patients
“The view of the patient is central to their care.”
Encouraging patients to be engaged in their own health is a commonly stated goal for health- and medical-care practices and can be considered a cornerstone of quality of care.2 Patient engagement is important for a number of reasons. Traditionally, it was used to understand the impact of an illness on the individual, to help improve patient efforts to be involved in their own care.2 More recently, there are growing efforts to involve patients directly in the R&D clinical development stage of medicines, impacting the planning, design, delivery, and evaluation of healthcare services, and thereby in shaping clinical practice to better meet individual needs.2,3
Several qualitative data production techniques have been used for engaging with patients, including patient-reported experience measures and patient-reported outcomes, which includes surveys, interviews, focus groups, and patient stories. This article centres on focus groups.
What is a focus group?
A focus group is a qualitative research tool for collecting data from a group of people. The technique is used to collect information on a particular topic or issue through group interview and participatory discussion among the contributors, who are gathered together in one place. Focus groups can be used to capture patient views and experiences on health and illness and can provide an exchange of experiences, concepts, and opinions between the participants.4
Focus groups have been used in a variety of settings over the years and have become increasingly popular in health research owing to their powerful investigative potential when attempting to understand patient attitudes, experiences, and behaviours.
Focus groups can be seen as providing a unique data source in comparison with other data collection methods. The main difference between focus groups and other qualitative methods, such as individual one-to-one interviews, is the interaction among group participants as well as between the interviewer (or moderator) and the group – essentially, focus groups explicitly use group interaction as part of the research method.5,6,7
The main objective of a focus group is to facilitate researcher understanding of the participants’ perspective on the discussion topic. Thus, emphasis should be on the exchange of ideas, attitudes, and perceptions through interaction among the group.6 Kitzinger (1995) suggests focus groups are ‘particularly useful for exploring people’s knowledge and experiences and can be used to examine not only what people think but how they think and why they think that way’ about a specific issue.7
Focus groups can also be used to provide advice on what should be considered when planning a clinical trial. Although not traditionally included when planning studies, recent thinking suggests the views of focus group participants can be considered alongside the advice of experienced people (doctors, research scientists, etc.). For example, data generated from focus groups could be used to provide information on: study questionnaires, ratings scales, and other assessments (i.e. if the way researchers plan to measure improvement in symptoms is acceptable to patients), study design (including what the practical challenges for participants of a clinical trial might be; e.g. travel, length of visits, number of sessions, and how to help improve these), and the suitability/acceptability of treatments and how patients can be helped to adhere to their treatment regimens. In this context, it is important for the focus group to facilitate adequate scientific rigour while eliciting the richest data from participants.
Table 1 provides a summary of the main pros and cons of focus groups; and Table 2 gives some examples of when focus groups have been used in health and medical research.
Table 1. Main pros and cons of focus groups6,7,8
|• Ideally suited to explore issues related to health research||• Requires considerable planning, resources, and effort|
|• Explores people’s knowledge and experiences||• Can be time-consuming for patients|
|• Helps collect in-depth and unique insights||• Groups can be difficult to assemble|
|• Can probe the reasons for people’s opinion||• Susceptibility to types of bias (facilitator bias, consensus bias, social desirability bias)|
|• Used to generate ideas and breadth of discussion||• Presence of other participants compromises confidentiality|
|• Can be used to generate hypotheses||• Generalisability; can be difficult to replicate|
|• Effective for the study of sensitive issues||• Discussion can digress from original topic|
|• Can easily combine with other methods||• Success depends on group dynamics and the skill of the interviewer or facilitator|
|• Does not discriminate against people who cannot read or write||• May not be able to collect data that readily translate into numerical findings|
|• Can encourage participation from people reluctant to be interviewed on their own|
|• Can encourage contributions from people who feel they have nothing to say|
|• Feedback from other members can spark ideas|
|• Can explore unexpected responses immediately|
Table 2. Examples of focus groups in the literature6,8
|Health- and medical-related issues||Health service-related issues|
|• Attitudes towards smoking, second-hand smoke, and quitting among young people||• Professional responses to organisational change; i.e. changing management arrangements|
|• Identifying commonly-used local terminology of symptoms or diseases; e.g. sexually transmitted infections; HIV/AIDS||• Identifying ways to improve medical education and professional development|
|• Understanding sexual abuse||• Connecting the views of users, caregivers, and providers on home-care service quality|
|• Understanding the health and social service needs of gay and lesbian people and their families|
|• Identifying psychosocial issues facing black patients with diabetes|
|• Understanding patients’ and clinicians’ experiences of consultations in primary care for sleep problems|
|• Assessment of users’ satisfaction during hospital stay|
“Focus groups can be an excellent method for primary care practices to assess the complexities of patient satisfaction issues and engage patients in the continuous quality improvement process. Focus groups can uncover unanticipated issues that surveys fail to identify.”
“The investigator who would study pain is at the mercy of the patient, upon whose ability and willingness to communicate he is dependent.”
Role of focus groups in pain research
Pain is complex and difficult to measure, as well as highly individual. People experience pain in very different ways, meaning it is difficult to develop an overall standard measure of the pain experience. Furthermore, measuring the physical aspects of pain is challenging – there is no simple objective test and no clear correlation between the extent of tissue damage and the amount of pain. In addition, cultural, economic, social, demographic, and environmental factors, along with an individual’s unique history, situational factors, interpretation of the symptoms and resources, their current psychological state as well as the physical pathology all contribute to the level of pain a person may experience. It is for this reason why engaging with the patient and allowing them to express their experiences, thoughts, and attitudes is so important in pain research.
Procedures – Key considerations when conducting focus groups
Focus groups require thoughtful consideration of need and purpose, considerable resources, and a high level of planning and effort to succeed.6,11
There are three main phases of conducting a focus group. When conducting a focus group, there are a number of organisational and planning considerations that need to be taken in account, such as: formulating specific and appropriate research questions (in order to elicit the most useful information from focus group discussion) and discussion guides (to provide a framework for the interviewer/moderator to ask and probe questions); participant recruitment, sampling strategies, and group composition (e.g. the size of the group; the importance of sex, class, and ethnic homogeneity in order to capitalise on shared experiences); arranging venues, number of sessions, session and question development; practical details of session management (the physical setting, participant comfort, group dynamics, role of the moderator/discussion leader and note-taker, atmosphere); and follow-up activities such as transcribing, data analysis, and writing up the results.5,6,7,11 These decisions are often largely determined by the purpose of the research and the resources available.
Focus groups have a number of advantages compared with other methods for healthcare researchers; for example, group processes can help people explore and clarify their views in ways that would be less easily accessible in an interview. Focus groups reach aspects other more conventional data collection methods cannot reach, such as shared and common knowledge, and forms of communication that people use in day-to-day interactions including jokes, anecdotes, and arguing.7
To finish, McParland and Flowers (2012) argued that the process of conducting focus group research with patients with chronic pain has received scarce attention. The authors therefore put forward nine lessons and recommendations they learnt from the conduct of three structured focus groups in psychological research with chronic pain samples.1 The lessons related to: ‘(1) translating study interest into group attendance, (2) ensuring the environment maximises the opportunity to learn from participants, (3) understanding participant motivations for attendance as well as, (4) what participants take from the group, (5) ensuring adequate question specificity, accommodating the needs of particular groups in, (6) moderation style and, (7) discussion time scales, (8) considering the function of conflict in the group, and (9) paying due attention to simultaneous dialogue.’1
- McParland JL, et al. Br J Health Psychology 2012;17(3):492–504
- Bombard Y, et al. Implement Sci 2018;13(1):98
- Halcomb EJ, et al. J Clin Nurs 2007;16(6):1000–11
- Kinalski DDF, et al. Rev Bras Enform 2017;70(2):424–9
- Greenwood N, et al. BMC Med Res Methodol 2014;14:107
- Wong LP. Singapore Med J 2008;49(3):256–60
- Kitzinger J. BMJ 1995;311(7000):299–302
- The Health Foundation. No. 18 Measuring patient experience. June 2013. Available at: https://www.health.org.uk/sites/default/files/MeasuringPatientExperience.pdf
- Schwarz M, et al. Eval Health Prof 2000;23(1):58–71
- Lasagna L. Ann N Y Acad Sci 1960;86:28–37
- Huston SA, et al. Res Social Adm Pharm 2008;4(3):186–205