Patient involvement in interprofessional education: A qualitative study yielding recommendations on incorporating the patient’s perspective

Abstract Background Patient involvement in interprofessional education (IPE) is a new approach in fostering person‐centeredness and collaborative competencies in undergraduate students. We developed the Patient As a Person (PAP‐)module to facilitate students in learning from experts by experience (EBEs) living with chronic conditions, in an interprofessional setting. This study aimed to explore the experiences of undergraduate students, EBEs and facilitators with the PAP‐module and formulate recommendations on the design and organization of patient involvement in IPE. Methods We collected data from students, EBEs and facilitators, through eight semi‐structured focus group interviews and two individual interviews (N = 51). The interviews took place at Maastricht University, Zuyd University of Applied Sciences and Regional Training Center Leeuwenborgh. Conventional content analysis revealed key themes. Results Students reported that learning from EBEs in an interprofessional setting yielded a more comprehensive approach and made them empathize with EBEs. Facilitators found it challenging to address multiple demands from students from different backgrounds and diverse EBEs. EBEs were motivated to improve the person‐centredness of health care and welcomed a renewed sense of purpose. Conclusions This study yielded six recommendations: (a) students from various disciplines visit an EBE to foster a comprehensive approach, (b) groups of at least two students visit EBEs, (c) students may need aftercare for which facilitators should be receptive, (d) EBEs need clear instruction on their roles, (e) multiple EBEs in one session create diversity in perspectives and (f) training programmes and peer‐to‐peer sessions for facilitators help them to interact with diverse students and EBEs.


| INTRODUC TI ON
Increasing prevalence of chronic diseases due to ageing urges western health-care systems to change. 1,2 About 35% of the European population is diagnosed with a chronic illness, and this number is expected to increase even further. 3,4 This rise leads to a need for more clinical integration, implying coordinating person-centred care in a single process across time, place and discipline. [5][6][7] Clinical integration requires a person-centred focus as opposed to solely focusing on the clinical problem. 7,8 Additionally, patients should be viewed as co-creators of the care process, who share responsibility with the health-care professional. [9][10][11] A systematic review of the effectiveness of person-centred care suggests a positive relation with care outcomes. 12 The delivery of integrated person-centred care requires interprofessional collaboration competencies from health-care professionals. The quality of interprofessional collaboration in health care is positively related to patient satisfaction and safety. [13][14][15][16] To foster interprofessional collaboration, professionals should be aware of their role, understand professional boundaries and communicate effectively with colleagues with adjacent backgrounds. 15,17 Such competencies can be learned via interprofessional education (IPE) training sessions. 18 IPE is known to help students acquire a more positive attitude towards and appreciation of other professions and their collaborative knowledge and skills. 19 IPE can be designed using paper cases, simulated patients or by involving real patients, hereafter called experts by experience (EBEs). Students find encounters with EBEs instructive because their authenticity contextualizes students' learning. 20 Additionally, students had more positive assumptions and attitudes towards people with chronic illness as a result of active patient involvement. 21 This outcome is imperative, as this counters a narrow medical focus and subsequently empathy decline in students from various health professions as a result of the hidden curriculum. [22][23][24] The hidden curriculum comprises of the norms and values that are implicitly transmitted to future health-care professionals and undermine the formal messages of the curriculum. 25,26 In addition to students, EBEs also reported positive outcomes of participating in health professions education. 27,28 They described being pleased to give something back to the community by sharing their experiences and reported increased self-esteem and empowerment, in-depth insight into the doctor-patient relationship and their problems. 27,28 Although involving EBEs in IPE seems to be a promising approach, the number of examples in literature is limited, and guidelines for its design and implementation are lacking. 29,30 Predominantly, in existing programmes, single EBEs share their experiences with chronic illness with students, either in a single interview or in a series of encounters. 30,31 In order to learn to collaborate interprofessionally and to obtain insight in the various roles such as partner, parent, employee and friend, that people fulfil in addition to being a person with a chronic illness, we developed an educational module: Patient As a Person (PAP). The module aims to increase students' insight into (a) the impact of illness on mental and social dimensions of health and (b) other health-care disciplines. The PAP-module consists of three meetings, in which students from various health professions interact with EBEs (Box 1). For a detailed description of students' various study programmes, see Appendix 1.
Other than existing programmes in which a single EBE interacts with students, PAP-groups include five EBEs with various diseaseand demographic backgrounds, to create diversity in the experiences and opinions of EBEs. 28 EBEs receive a short practical instruction before the PAP-module, in order to guarantee the authenticity of their experiences. The purpose of this study is to explore the experiences of all stakeholders involved (undergraduate students, experts by experience and facilitators) with the PAP-module in order to formulate recommendations for the optimal design and organization of patient involvement in IPE.

| Study design
Using a qualitative study design, we explored the individual experiences of all stakeholders involved. Focus group interviews and individual interviews were conducted between March 2018 and May 2019. We interviewed EBEs, students and facilitators separately so they could talk freely about their roles and the roles of other stakeholders. Our theoretical orientation was based on social constructivism which uses the premise that social interaction leads to the development of new insights. 33 This way, researchers can explore hidden assumptions. 34,35 We report relevant aspects of this study using the Consolidated Criteria for Reporting Qualitative Research (COREQ). 36

| Setting and participants
In the PAP-module, 216 students from three institutions participated: Maastricht University (health sciences and medicine, first year), Zuyd University of Applied Sciences (speech therapy, physiotherapy and nursing, third and fourth year) and Regional Training K E Y W O R D S health professions education, interprofessional education, medical education, patient involvement, patient-centred care, person-centred care Center Leeuwenborgh (home care provision, third and fourth year).
An explanation of students' backgrounds, as well as an overview of the number of participants of the PAP-module, can be found in Appendix 1.
We conducted eight semi-structured focus group interviews and two semi-structured qualitative interviews with a total of 51 participants (Table 1). We conducted four focus group interviews and two individual interviews with students, two focus group interviews with EBEs and two with facilitators.
The main inclusion criterion for participation in the study was having followed the entire PAP-module. The EBEs who participated in this study had a diverse range of illnesses including acquired brain injury, amputation, post-traumatic stress disorder, cancer, neurological and psychiatric illness. To recruit EBEs, we used purposive sampling, aiming to obtain diversity in terms of disease background, age and gender. The facilitators asked EBEs face-to-face whether they would like to participate in the study. We contacted those EBEs willing to participate, to plan the interview. We selected facilitators and students using convenience sampling and recruited them via e-mail after they completed the PAP-module. Non-responding among students from Zuyd University was primarily attributable to students being at internships and having examinations. EBEs received reimbursement for their travel expenses, students received a ten euro gift card, and facilitators received no reward. We informed all participants about the goal of the interviews using written information provided two weeks in advance and verbal explanation just before the interviews.
An informed consent form was signed when they agreed.

| Data collection
All interviews took place in quiet rooms. The focus group interviews lasted approximately 100 minutes, whereas the individual interviews lasted 45 minutes. During all interviews, a semi-structured

| Box Format of Patient as a Person (PAP-)module
The PAP-module was developed by students (SR and MB). Students from various disciplines and educational institutions within the health-care domain (ie a university, a university of applied sciences and two secondary vocational education institutions) interacted with people with chronic conditions in three meetings. A PAP-group consisted of five EBEs and ten students from various educational institutions. Practically, this means that roughly two-thirds of students followed the module at another educational institution than their own. Diversity in student backgrounds was strived for when composing every PAP-group, to the extent that scheduling constraints allowed. An overview of the participants' backgrounds can be found in Appendix 1.
EBEs were asked to share their views on health and health care with students, using their experiences to illustrate potential improvements in health-care delivery. These experiences could be painful and intimate. Confidentiality was assured by referring to students' professional behaviour. EBEs were recruited via primary care practices, hospitals and patient associations. Teachers acted as facilitators of the group process and will, therefore, be referred to as facilitators. Their tasks included safeguarding a confidential and encouraging environment in which both students and EBEs dared to be vulnerable, moderating the group conversation and structuring the meetings. Facilitators were present during the plenary first and third meeting only. EBEs are encouraged to attend the session together with an informal caregiver.

II: Pairs of students visit an EBE and discuss their life with a chronic condition
Two students with different educational backgrounds visit one EBE. These student pairs are composed to create diversity in backgrounds. Pairs, rather than larger groups, realize an atmosphere of trust and confidentiality. The EBE shares how disease has impacted his or her mental and social well-being. Moreover, the EBE reflects whether and how health-care professionals have addressed these dimensions adequately and provides suggestions for future improvements in professional-patient communication. Students can, but are not obliged to, use a framework with various dimensions of health to structure their conversation (Appendix 2).32

Assessment
After visiting the EBE, students write a reflective essay in which they elaborate on (a) how they will cater to patients' needs concerning the mental and social impact of health in their future work and (b) whether (and if so, what) they learned from the perspective of the student of another profession. Additionally, students highlight similarities and differences between their perspectives and those of their fellow student.

III: Plenary meeting at educational institution focusing on synthesizing learning outcomes
The translation of lessons learned into future practice is the central theme in this final session. All five groups of two students share the lessons they learned in Meeting II and discuss these with fellow students and the EBEs. Commonalities and differences between the five stories are discussed to broaden the learning experience. and participants were asked to provide feedback on this summary as a member check, which two participants did. An anonymized version of the data on which this study is based is available upon request. The data were encrypted, and the key was stored on a separate server.

| Data analysis
We used conventional content analysis to analyse the transcripts. 38 The transcripts of each source (ie students, EBEs and facilitators) were separately and independently analysed by SR, MB and JvDo using open coding. Next, using axial coding, we individually grouped the relevant codes into subcategories. 34 Afterwards, we compared subcategories until we reached consensus and categorized them into key categories (Appendix 4). The preliminary results section, including an extensive set of quotes, was subsequently discussed with JdN and LvB. We used Nvivo 12 to organize and code the data. 39  That's quite important, whether someone can actually climb the stairs in their home".

| Insight into the impact of illness on mental and social dimensions of health
Additionally, students from both universities reported that the approach common in their fields was more formal and analytical compared to the approach they observed in the students from the vocational level. These students from the universities stated that a more intuitive approach might enable them to connect with EBEs' needs better.
Students reported that they found the interprofessional collaboration inspiring because they saw how students from different disciplines were passionate about their future work. Health sciences students found it very interesting to get more insight into the prac-

| Reasons for participating
A primary reason for EBEs to participate was improving communication in health care by contributing to the development of students.
EBEs stressed that training in empathy and collaborative competencies could help prevent some of their negative experiences from occurring again with future EBEs. Only in a different manner".

| Assertiveness and recognition
EBEs reported having become more assertive in professional-patient relationships and that they reflected on their general behaviour and attitudes.

| Fostering an encouraging learning atmosphere
Facilitators, EBEs and students reported that it was essential to foster an encouraging learning atmosphere in which everyone felt valued and dared to be vulnerable. After all, EBEs were asked to share personal and sometimes painful experiences of living with chronic illness in plenary meetings. Facilitators disclosed personal experiences to display personal vulnerability in order to create an atmosphere of trust and equality. Some facilitators used this as a specific intervention, whereas others described this as something that happened spontaneously. One facilitator expressed being unwilling to share personal experiences because of privacy considerations.
Facilitator University of Applied Sciences 3: "This works as an intervention. By acting vulnerable in the beginning, you create a safe environment that makes the next person feel comfortable to share something personal too".
Facilitator University of Applied Sciences 2: "For me, it is a matter of emotion. I did not use it consciously".

| Sensitivity to students' vulnerability
Facilitators reported that some students were particularly vulnerable in the PAP-module because they had experiences with illness in their personal situation. They recommended a delicate approach towards students, mainly since the mental and social components of illness are discussed as part of the module. EBEs knew beforehand that sharing personal information is their task in the module. However, for some students, the stories of EBEs made them relive their experiences with health care as a patient (relative). Students sometimes shared these stories, which they might not have expected beforehand. Facilitators said that students should receive information about the possibility of reliving painful personal experiences and that the possibility of aftercare for students should be present. EBEs confirmed this by stating that they sometimes felt that it was intense for the students to process EBEs' experiences.
Facilitator University of Applied Sciences 1: "I noticed that some students were in a double role. On the one hand, as a student, on the other hand, they had past experiences as a patient. At some point, this played a role in the discussion. This was enriching, but, … it complicated the session". EBE 11: "We share quite a lot with those young folks.
Sometimes we think, auch, this might be a bit too much?" Furthermore, facilitators and students reported that they believed that participating EBEs were more verbally skilled and able to cope with life with a chronic disease than most EBEs. They thought that these EBEs were more experienced and invested more in improving health care than most EBEs. EBEs confirmed that less proactive EBEs are less likely to participate in the PAP-module.

| Recruitment
In some groups, informal caregivers participated along with the EBEs. Facilitators and students reported that these different perspectives were insightful. EBEs confirmed this: they regard informal caregivers as having equivalent experience with the health-care system, which added a new perspective to the EBE's experience.

| Participant preparation
Some EBEs misunderstood students' genuine interest in their stories as a sign that the students were interested in friendly contact outside the confined meetings of the PAP-module. One student reported being glad to visit EBEs in their home together with a fellow student. Her fellow took it upon her to introduce the end of the encounter. This helped her to realize her discomfort with having to finalize the encounter with the EBE. She became aware that her compassion with the EBE compromised her professional boundaries.
Facilitators separately volunteered that more students experienced such difficulties.
Some EBEs reported that students sometimes gave limited feedback on whether the PAP-experience was helpful, which was disappointing for them. Additionally, some EBEs had doubts about the long-term effects of their contributions to students' behaviours.
EBE 1: "They listen to your story and during the session they say "yeah, it had quite an impact," but you do not really get insight in what this means for their future".

| Summary of findings
This study aimed to explore the experiences of undergraduate students, experts by experience (EBEs) and facilitators with the Patient

| Conclusions on involving EBEs into IPE
Based on the experiences of students, EBEs and facilitators, we formulated recommendations regarding the design and organization of IPE involving EBEs.

| Interprofessional learning in the EBEs' home context
Meeting EBEs in their home context and talking with the EBE about various domains of health, together with students from different disciplines, made students adopt a more comprehensive approach. The interprofessional learning of students primarily takes place in either classrooms or professional practice. In contrast, EBEs experience the consequences of their illnesses mostly in their home environments. 40 Our study shows that the home context of the EBE can be an appropriate place to start learning about the social and mental impact of illness. This approach could make students look at EBEs as individuals who experienced a change in the roles they fulfil in life as a result of illness and help them in coping with this change.
This form of education might be instrumental in complementing the hidden curriculum, which encompasses the implicit and often unintended learning of students and includes a narrow medical focus and consequently, empathy decline. 25

| Aftercare for students
Our study indicates that being receptive to students in need of aftercare is imperative as they might relive painful, personal experiences in health care, and they can have a double role as a student and patient (relative). Facilitators should be receptive, and students should know that there is an opportunity to share painful experiences with a confidentiality advisor. Reflecting on such difficult interactions and coping with them is a part of professional identity formation, which refers to the moral and professional development of students and the integration of students' individual maturation and their growth in professional competency. 43,44 Coping with such emotions can be seen as a form of professional identity formation which, when mentored appropriately, can add to health-care professional resilience. 43,44 In addition to aftercare, EBEs should be made aware of the temporary nature of the contacts as students sometimes felt discomfort in ending the contact, because they felt pressure to keep in touch with EBEs who experienced loneliness. On the other hand, students should be made aware of the need to be clear about their professional boundaries, as clear professional boundaries can prevent compassion fatigue in health-care professionals. 45 To lower students' threshold in ending the home visit, all meetings that take place in the EBEs' home context should be attended by at least two students.
Recommendation 2: Let students visit EBEs in pairs or larger groups.
Recommendation 3: Be receptive to students needing aftercare as a result of reliving painful personal experiences in health care as a patient (relative).

| Training of experts by experience
Providing only a practical instruction, yet no training to EBEs, yielded authentic EBE experiences which made students empathize with EBEs.
However, in some instances, students and facilitators believed that EBEs focused more on venting their experiences with a therapeutic goal for themselves as opposed to constructively sharing their experiences to help students. Our study highlights the importance of clearly instructing EBEs on the intended learning outcomes of the module.
The extent to which EBEs need extensive training is debated in the literature and varies considerably between different programmes involving EBEs as teachers. 46,47 Training about strategies in facilitating interprofessional learning tends to decrease EBEs' perceived authenticity. 46 When the authenticity of EBEs' contributions is essential, as it is in our programme, training and extensive selection of EBEs might be undesired. However, this could have the consequence of including some EBEs who focus primarily on venting their own experiences.

| Involving multiple EBEs and caregivers
Our results revealed that involving multiple EBEs in one PAP-group with multiple students showed two advantages.

| Strengths and limitations
Our study had a wide mixture of participants. We included students and facilitators from different disciplines, educational levels and institutions and EBEs with different illnesses. This increased the richness of the data.
However, the results of our study cannot simply be extrapolated to other circumstances. Some limitations must be acknowledged. Despite the mixture of participants involved, we were able to include only two students from the university of applied sciences level, whom both studied speech therapy. Therefore, students' views on IPE with students from different levels are predominantly based on the opinions of students from university and vocational level. Perhaps students from the university of applied sciences level had different experiences with the PAP-module. Hence, data saturation was not achieved for students from all educational levels.
Additionally, the EBE population that participates in the PAPmodule is not a representative sample of people with chronic illness because they were more verbally skilled and invested in improving health care. However, some ability of the participants to introspect and verbalize seems to be essential for the success of this programme. EBEs in the PAP-module participate voluntarily, which means that the EBEs have time and are willing to contribute to health professions education and are mobile enough to travel.
This resulted in an overrepresentation of EBEs of 50 to 70 years old.
Another limitation is the double role fulfilled by SR and MB. They initiated and developed the module and analysed the interviews as researchers. Therefore, they were at risk of having a biased view of the results. To tackle this potential limitation, the interviews were moderated by independent researchers and the transcripts were coded by a third, independent, researcher (JvDo). The preliminary results section, with an extensive set of quotes, was subsequently discussed with three other researchers (LvB, JdN and HvB) who were not involved in the PAP-module.

ACK N OWLED G EM ENTS
We are grateful to all the participants of this study for their contributions to the focus group sessions and interviews. In particular, we would like to thank Jan van Dalen, Valerie van den Eertwegh, Jill Whittingham, Hester Smeets and Erik van Rossum for their various contributions.