Patient representatives: Crucial members of health‐care working groups facing an uncertain role and conflicting expectations. A qualitative study

Abstract Background Patient representatives (PRs) have been involved for decades in health‐care development, and their participation is increasingly sought in health‐care working groups (HCWGs) on every level. However, information on how the role could be further developed and teamwork improved remains sparse. Objective To explore the role of patient representatives in clinical practice guideline (CPG) monitoring groups, to describe their contributions and identify possibilities of improvement. Design Qualitative design using semi‐structured interviews analysed by content analysis. Setting and participants Interviews were conducted with 11 PRs, 13 registered nurses, and 9 physicians, all members of national committees monitoring CPGs for cancer in Sweden. Results Most participants considered the PR role important but mentioned several problems. PRs’ contributions were hampered by uncertainties about their role, the low expectations of other group members and their sense that their contributions were often disregarded. Some professionals questioned whether PRs were truly representative and said some topics could not be discussed with PRs present. Conclusion This study highlights the fundamental problems that remain to be solved despite the long involvement of PRs in HCWGs. Even though the PR role and teamwork differed between the groups, most PRs need to be empowered to be actively involved in the teamwork and have their engagement and knowledge fully utilized. Enhancing teamwork through clarifying roles and expectations could lead to more inclusive and equal teams able to work more effectively towards the goal of improving health care. Patient or public contribution PRs were information givers in data collection.


| INTRODUC TI ON
Patient and public involvement (PPI), increasingly recognized in planning and improving health care and now central to health reform agendas in the Western world, 1-3 continues to lack a consistent definition. 1,2 Consultation, engagement, participation, partnership and co-production are all described as aspects of PPI, implying greater or lesser levels of involvement. 1 PPI can vary from participation in public polls, surveys, seminars, workshops, focus groups or individual interviews to service in development or monitoring groups for clinical practice guidelines (CPGs). 4 Best practices for PPI are also unclear, 1 and professionals sometimes resist patient participation. 4 Patient participation has been defined in several ways. 5,6 This study is theoretically based on the fundamentals of care framework, 7 with a specific focus on patient participation and the view that the patient is a resourceful individual who receives, comprehends and possesses information and knowledge that should be shared and respected. 5 Patient participation can occur on the direct care (micro), health-care organization (meso), and societal and governmental (macro) levels. 8,9 The fundamentals of care highlights a holistic perspective on the patient and address the critical need to embed the patient's voice at many levels of the health-care system. 7,10 As patients' experiences and general views on health care are increasingly required, patient representatives (PRs) are often mandatory in local and national health-care working groups (HCWGs).
Organizations with PPI experience have reported that participants in CPG working groups require certain abilities or skills, such as communication and teamwork, for group processes to be effective. 4 Professionals sometimes question the added value of patients' input, considering themselves already familiar with most patient findings. 11 However, patient involvement is reported to make practice-based knowledge more explicit in guidelines and to contribute to patientrelevant topics receiving greater priority. 11,12 PRs are also reported to influence the implementation and dissemination of CPGs 12 ; however, the goals of involving PRs are often implicit or vaguely articulated, making it difficult to estimate their impact. 13 Wheelan describes a working group as members striving to develop an efficient and effective structure to accomplish shared goals. 14 According to the integrated model of group development, a working group does not become a functioning team until the goals are established and methods to accomplish them are in place. 14 Involving PRs throughout the process of guideline development was evaluated as positive, but integrating patients' perspectives with research evidence was described as challenging. 11 Whether PRs can or should represent a broad patient constituency or whether they should bring their own personal experience to the team remain topics of discussion and are key recruitment questions. 1,4,11,13 Difficulties in recruiting and supporting PRs and PRs' lack of familiarity with scientific and medical terminology are also described as barriers to their work in HCWGs; clear expectations, training, support, and involving more than a single patient have all been described as facilitators. 4 An official government report, A National Cancer Strategy for the Future, 15 resulted in the establishment of regional cancer centres (RCCs) in each of the six health-care regions in Sweden in 2011. The RCCs focus on patients with cancer, aiming to increase health-care quality, results and equality. 16 In line with this purpose, RCCs support the 49 (2020) national CPGs for the care of cancer patients.
The care programmes include recommendations, quality indicators and target levels and are updated annually by a monitoring group.
All these groups include at least one PR (or relative) along with the professionals. All RCCs provide PRs with support and education.
Although PRs have been involved in developing health care for decades, and their participation is increasingly sought on all levels, the impact of their contributions is difficult to measure and seems to vary widely. 2,9,12,17 PRs' participation in HCWGs is also still hampered by obstacles, 1,4 and reports on how to further develop the PR role remain sparse. Since PRs are increasingly expected in healthcare working groups on all levels in Sweden, it is important to deepen the understanding of their role and contributions to the groups and possibilities for improvements. To the best of our knowledge, the PR role in CPG monitoring groups, an example of HCWGs on national level, has not previously been studied in Sweden.
The aim of the study was to explore the role of patient representatives in national clinical practice guidelines monitoring groups, to describe their contributions and to identify possibilities for improvement.

| Design
The study had a qualitative design using semi-structured interviews with members of national CPG-monitoring groups for cancer diseases.

| Participants and setting
Convenience sampling was used to recruit members of Swedish national CPG-monitoring groups for cancer. From approximately 40 CPG-monitoring groups responsible for cancers with different incidences and managed by different medical specialties, a total of seven were included, with the possibility to add more CPGs if needed to reach saturation (Table 1). Mailing lists with the names and addresses of members were provided by the RCCs.
These groups included PRs (patients and relatives) and clinicians, mainly registered nurses (RNs) and physicians. All participants in the study were permanent members of a CPG-monitoring group, and the PRs were invited to participate in the same way as the professionals.
All nurses and PRs on the lists were approached via e-mail with information about the study and a request for an interview.
Physicians outnumbered the other two categories, so a letter was sent to every third physician in each group, excluding the group chairperson. The sole exception to this approach was made for physicians on the CPG-monitoring group for lung cancer, who were all eventually invited. Despite supplementary information given to the chairperson, the 14 physicians in this group jointly decided not to take part in the study and offered no explanation.
All individuals were reminded twice by e-mail. All the physicians and nurses in the monitoring groups were experienced and highly qualified in their medical fields. University hospitals outnumbered county hospitals. Of 11 PRs, 8 were members of patient associations. In addition to the physicians in the group for lung cancer, four physicians and three nurses actively declined to take part in the study, and nine and eight, respectively, did not respond to repeated requests. All patients and relatives approached agreed to take part in the study.

| Data collection
Two of the authors (AH and EL) conducted the interviews from August 2017 to May 2018. All three authors had worked with patients with cancer, either as RNs on surgical wards (AK and EJ) or as an MD specialized in endocrine surgery and breast cancer (EL), but none had ever worked with PRs on health-care teams. Each interviewer initially conducted one pilot interview and the technique was modified after thorough discussion with the third author, who is experienced in qualitative analysis. Interviewers met with 11 PRs, 9 physicians and 13 RNs. Details and characteristics of participants are presented in Table 1.
The participants were from various locations in Sweden. All interviews, but one, were conducted by telephone. One interview was conducted face-to-face with an RN who the interviewer was able to visit at her workplace. All interviews were recorded and lasted for approximately 20-30 minutes. The interview questions are shown in Table 2. Probing questions were used to encourage participants to clarify and expand upon their responses.
The interviews were transcribed word for word by a secretary.
The two authors responsible for the interviews listened again to most of the interviews before confirming the transcripts. Participants were included until data were considered saturated. 18

| Data analysis
The material was analysed using conventional content analysis, 19 an inductive approach without pre-conceived categories. The analytic process is presented in Tables 3 and 4. Throughout the analysis, the authors reflected upon whether their backgrounds and experiences might risk biasing the results.

| Ethical considerations
The study followed the Code of Ethics of the World Medical Association (Declaration of Helsinki). 20 Approval was obtained prior to the study from the local regional ethical review board (D.nr 2017/123). Participants were given written information about the study, including that participation was voluntary, the recorded interviews would be treated confidentially, and the participants could withdraw at any time without an explanation. Written informed consent was obtained from all individuals before starting the interviews.

| RE SULTS
Professionals reported that PRs' participation in the group opened their eyes to what patients viewed as important and that patients' opinions were relevant to developing health care. However, several objections were also raised by both professionals and PRs. The six categories that emerged in the analysis ( Figure 1) corresponding to various phases of PRs' involvement in the groups ranging from recruitment through aspects of the work, to possibilities for improvement are described below, illustrated with quotations from PRs, RNs and physicians.

| PRs' suitability for the role and the question of representation
Professionals and one PR mentioned that PRs should have some distance from their illness and be in a stable phase of the disease before taking part in medical teamwork. How were you introduced to the group? How were the PRs introduced to the group?

TA B L E 1 Characteristics of participants
Have you been part of the group from the start? (Asked only of PRs) Give an example of when your opinion influenced (possibly changed) the guidelines.
Give an example of when a PR's opinion influenced (possibly changed) the guidelines.
Give an example of when you suggested a change, but the proposal was turned down.
Give an example of when the PR suggested a change, but the proposal was turned down.

TA B L E 3 Analytic process
The transcripts were read by each author independently to achieve immersion and obtain a sense of the whole.
All authors separately coded a number of interviews to identify and sort meaning units for preliminary coding by highlighting the words from the text that appeared to capture key thoughts and concepts. During this part of the analysis, all authors came together in a face-to-face meeting and discussed the preliminary coding until they came to agreement.
The first author led the analysis and coded the rest of the interviews. This step was performed in close collaboration with the second author. The codes were sorted into preliminary sub-categories (clusters) based on how different codes were related and linked. The labelling of the sub-categories, and the content was thoroughly discussed. The sub-categories were thereafter organized into categories. Based on the coding scheme, the content of the categories was developed. This step included discussion of similarities and differences in the PR role in different monitoring groups. It also included a discussion of the relation between the categories.
All interviews were re-read by the first author, and the findings were compared with the original transcriptions to ensure that they reflected the views of participants in different roles and different monitoring groups.
The rigour of the analysis was established through this detailed description of the steps and examples of the process shown in Table 4. Quotations from the interviews were added to confirm the content of the categories. This process enhances the credibility of the analysis, as the last author (experienced in qualitative research) was involved in debriefing sessions including reading and reviewing transcripts, coding and identifying emerging categories. 33 The findings were thoroughly discussed among all authors until agreement was obtained for each category. more seriously. It's not about the individual patient's own experiences, but more about the necessity of securing broader support so that you represent patients collectively. (PR)

| PRs' recruitment and introduction
Recruiting and introducing PRs to the group and the work varied widely between CPGs. Some groups required recruitment through patient organizations, while others recruited through RCC patient education programmes, health-care personnel or other PRs.
Professionals reported difficulties in recruiting suitable PRs, the heavy workload could make the position unattractive.
Overall, it's been difficult to find someone, and it has also been hard for them to participate.

| PRs' support and external and internal collaboration
PRs considered it their responsibility to prepare for meetings by reading all the information, even though they sometimes did not (PR) Support from a patient organization was appreciated, but it could also be the source of conflicting views and attitudes that made it difficult for PRs to contribute their best. A designated support person at an RCC could assist the PR in adopting a professional view. Support could also be helpful to PRs coping with issues discussed in the group, such as mortality and financial constraints. PRs who had received education through the RCC before their assignment to a group stated they would like a second course to refresh their knowledge.

| Participants' suggestions to enhance the PR's role and the group's teamwork
Both PRs and professionals wanted written definitions of the PR role, including terms, expectations and agreements with appropriate patient organizations on sharing information. They also underlined the importance of clarifying that the PR is not just a participating patient, but contributor best placed to communicate the patient perspective.

| Discussion
Participants in this study mostly considered the PRs' role important, but also raised several objections. PRs' contributions were described as often disregarded, hampered by the uncertainty of the role and the low expectations of other group members. Some professionals also questioned the PRs' representativeness or said they were unwilling to discuss all topics in their presence.
In several international settings, patient participation in healthservice development is a mandatory part of health-care policy 21,22 implemented on all levels from direct care to society and government. 7 areas. However, medical language can be a barrier and PRs often feel isolated during meetings. 4,12,24,27,28 In this study, when PRs did not always understand the medical terminology, they felt inferior or excluded. Explanations could be helpful, but physicians noted that they took time and slowed group meetings. When the language was adjusted, however, PRs could understand, be involved and affect discussions with their perspectives. Adjusting language and explaining complex issues could also benefit other group members, as even professionals shared in the interviews that they did not understand everything discussed in the groups. These findings support the need to provide PRs with assistance on complex scientific and technical issues to optimize their participation.
Teamwork is necessary for organizational success. 14  and their inclusion in CPG-monitoring groups has been reported to be only partly successful. 28 PRs should not only be invited to meet with the group, but also to take part in discussions based on respect, a key characteristic of patient participation. 5 PRs in this study felt that they had affected the CPGs more than the professionals, especially the physicians, acknowledged. That may reflect a difference in priorities between physicians, who have a stricter focus on medical issues, and PRs and nurses, whose foci are broader. PRs in this study agreed with the findings that some issues could be overlooked by professionals and that PRs could help to identify patient-relevant topics and outcomes, as previously described. 12 The representativeness of the PRs was an important question, especially for physicians, and has been presented as a barrier. 4 This doubt may also help to explain some professionals' resistance to patient participation. 1,4,24,28 Some group members described it as a problem if the PRs' opinions were not supported by a patient organization, but others were concerned that including only members from patient organizations risked missing different important views.
Whether a PR should be expected to represent the views of an organization or to deliver their own personal experience remains a key recruitment question. 13 Work descriptions used by some HCWGs may assist in clarifying expectations. 13 Support for PRs seems an essential area for improvement. Support and training, the two most frequently reported facilitators in a review, 4 have also been identified as key conditions for meaningfully involving PRs. 13 Being objective and expressing personal opinions are demanding tasks for any PR. PRs in this study suggested involving a group of patients rather than only one, as has previously been described to facilitate PPI in establishing guidelines. 4 Some PRs suggested professionalizing the PR role and defining its responsibilities and necessary knowledge.
As early as 1978, the World Health Organization stated that 'people have the right and duty to participate individually and collectively in the planning and implementation of their health care'. 22 Much work has been done since then, but our results show that more is needed. Health-care professionals need to embrace what patients themselves describe as participation to create the best conditions for that participation. 5 Patients' descriptions focussed on interacting with health professionals, rather than merely taking part in decisions, and on having knowledge rather than being informed. 5 All group members need to work together to achieve those goals. If PRs were considered equal team members and respected and resourceful individuals 5  One limitation is that all interviews, but one, were conducted by telephone instead of face-to-face, but this approach did allow us access to a nationwide group of participants. The PRs' suitability for the role was mainly mentioned by the professionals; only one PR expressed such concerns. This was not put as a direct question to the participants, which may be considered a mistake. However, most fears expressed by the professionals were never reported as actually experienced.
Another limitation is the inclusion of PRs from working groups focussed only on cancer. However, most issues of concern for cancer patients would probably be recognized by other patients, although perhaps from different angles or to a lesser degree. Eventually, the PRs were only information givers. It would have been valuable if PRs also had been part of the research process.

| Conclusion
This study highlights the fundamental problems that remain to be solved despite the long involvement of PRs in HCWGs. Even though the PR role and teamwork differed between the groups, most PRs need to be empowered to be actively involved in the teamwork and have their engagement and knowledge fully utilized. Clarifying the roles of all participants and their shared goals is necessary to establish an effective working group. Enhancing teamwork through clarifying roles and expectations could lead to more inclusive and equal teams able to work more effectively towards the goal of improving health care.

| Practice implications
These findings could help HCWGs collaborate with PRs to develop their role. This knowledge could support working groups in improving systems for selecting, introducing and supporting PRs, as well as offer tools for ongoing evaluations and improvements of the teamwork.

ACK N OWLED G EM ENTS
The authors would like to thank all participants who were generous with their time and personal thoughts.

CO N FLI C T O F I NTE R E S T
The authors declare no conflicts of interest.

DATA AVA I L A B I L I T Y S TAT E M E N T
We regret that there will be some difficulties to share the data utilized in the article. The transcribed interviews could be requested from the corresponding author, but the interviews are unfortunately only presented in Swedish. Also, there would be concerns due to ethical restrictions as the informants' privacy is granted by the local Regional Ethical Review Board in Sweden. However, all authors declare that all data were collected as described in the Material and Methods sections and that the data sets, including citations, are completely and correctly reproduced.