Preparing researchers for patient and public involvement in scientific research: Development of a hands‐on learning approach through action research

Abstract Background Acquiring the theoretical and practical knowhow of conducting patient and public involvement (PPI) in research is not part of the traditional curriculum of researchers. Zuyd University of Applied Sciences and Huis voor de Zorg, a regional umbrella patient organization, therefore started a 1.5‐year coaching programme. Objective To establish a community of practice by developing a PPI coaching programme for senior and junior health services researchers of Zuyd University. The context consisted of research projects conducted by the participants. Methods A participatory action research methodology. Data were collected from reports of thematic group meetings and individual sessions with participants, field notes and regular reflection meetings with the project team. Data were analysed by reflexive deliberation. Findings The programme comprised a kick‐off meeting (52 attendees), followed by 7 group meetings with 11 junior and 9 senior researchers. The project team constructed a serious game based on the concept of the participation ladder. Questions and concerns differed for junior and senior researchers, and separate tailored meetings were organized for both groups. Between group meetings, participants received individual assignments. Group meetings were accompanied by individual coaching sessions to provide tailor‐made feedback. The programme concluded with a combined meeting with all stakeholders. Conclusion Building a community of PPI practice through action research facilitates the development of a coaching programme that fosters social learning, empowerment and the development of a shared identity concerning PPI. The role and responsibilities of senior researchers should be distinguished from those of junior researchers.


| INTRODUCTION
Patient and public involvement (PPI)* is becoming a common feature in health research, as is the provision of appropriate support and education of patients who participate in research. 1,2 Publications on PPI often report on the efforts of research institutes to prepare patients for their new role as advisor, reviewer or collaborative partner, by developing lay summaries, glossaries, introduction sessions and training courses. 3,4 In contrast to the attention given to patients, there is hardly any literature available about supporting and guiding researchers in their new role as facilitator and supporter of PPI in their research projects. PPI is rarely part of the basic research curriculum of PhD candidates, and they face several challenges when they want to start engaging patients. 3,5,6 They lack knowledge on concepts of PPI and ways of applying them in practice. [7][8][9][10] Not knowing the benefits and pitfalls of different options and their impact on the research outcomes is one of the reasons for not using the most appropriate PPI methods. 11 Other reasons for limited use of PPI by researchers are reluctance to share control over the research agenda, resistance to change, time pressure and tokenism that is engaging patients only to meet funding requirements. Reasons from the perspective of patients are doubts about the value of personal experiences in research, scientific jargon, questions of representativeness, personal health conditions and not knowing what is expected from them. [6][7][8][9][12][13][14] To overcome these challenges, it is not only patients who need education, but researchers also require practical tools, recommendations and structured training to show the benefits of PPI and provide guidance on ways to customize PPI methods for specific research projects. 7 In Australia, the Consumer and Community Involvement Programme developed and evaluated a half-day workshop for researchers working in public health and medical research. 16 This workshop aimed at "increasing awareness of consumer and community involvement; changing attitudes to future implementation of involvement activities and influencing behavior in the methods of involvement used." The workshop covered fundamentals of consumer and community involvement: why it is important, benefits of and barriers to involvement, ethical considerations and methods of implementation, in particular the need to find "suitable people." After attending the workshop, the number of participants who found PPI very relevant had doubled, and almost all confirmed that the workshop had increased their understanding of PPI. Qualitative research among UK trialists and patient representatives involved in trial steering committees found less enthusiasm for the need to train researchers, in particular from the perspective of patient research partners, who felt that researchers "already possessed the skills needed." Although some researchers questioned the evidence base for training researchers, they did identify a need for guidance on how and when to involve patient representatives and in particular the challenge of finding "suitable people." 17 The study concluded by suggesting that alternative types of education, such as coaching, were suitable to learning about PPI, maybe even together with patient representatives, to learn from each other. It also encouraged further efforts to conceptualize, design and deliver PPI training to researchers, to convince them of its relevance and support uptake.
Some studies and systematic reviews provide a first overview of PPI concepts that addresses the challenges to researchers 2,18,19 and suggest conditions that are relevant to include in a coaching programme for researchers. These conditions are involvement of patients from an early stage; supporting patients to work in pairs; formulating common goals; clarifying mutual expectations and responsibilities; encouraging dialogue and co-learning; and finally regular evaluation and feedback on processes and outcomes of PPI. 7,[20][21][22] Many studies on PPI emphasize the added value of the participation ladder model 23 in distinguishing levels of involvement in terms of contributions and opportunities to influence the research. The FIRST framework for PPI (Facilitate, Identify, Respect, Support, Training) provides arguments to involve both senior and junior researchers. 5,7 It is clear that researchers need evidence to justify their PPI efforts and guidance on ways to apply the above-mentioned concepts in daily practice. 7 The literature also suggests that sustainability should be ensured by creating a "soft" infrastructure, including a culture of participation and a solid set of policies, rules and procedures. 3,5 This means that educating researchers should be combined with the establishment of a community of practice that provides active and long-term support and facilitation of senior and junior researchers. 24 It may even require a new approach to education and coaching to really enhance the implementation of meaningful PPI and to reduce the risks of tokenism. What is needed is a programme or coaching approach where researchers can simultaneously learn about PPI, debate personal values and beliefs, share practices and experiences on a regular basis and develop a shared identity around PPI. They also need an approach that integrates strategies at the level of individual researchers with those of the research institute. This is why in 2013, senior and junior researchers of the Research Centre on Autonomy and Participation of People with a Long-term Condition at Zuyd University of Applied Sciences The Netherlands developed a systematic approach to the implementation of PPI in research projects. 25 The objective of this article was to describe and reflect on the development of a hands-on learning approach through a process of shared learning, debate and the exchange of experiences, supported by the provision of relevant evidence. This approach focused on encouraging researchers to consider and explore PPI methods, and to develop a critical though supportive attitude towards PPI and skills to implement PPI in practice. The ultimate goal was to establish a community of PPI practice for PPI through action research. We believe *The term patients is used as synonym of clients, end-users and health consumers. We also include carers, family members or health professionals who represent patients unable to speak for themselves. that it is particularly the managing directors and senior or principal researchers who are responsible for supporting and mentoring junior researchers or those novel to PPI in research who could benefit from our findings.

| Project team
The project team comprised 2 senior researchers and 2 patient experts: the leading investigator at Zuyd University of Applied Sciences, with a background in nursing (AM); a specialized public involvement staff member of Huis voor de Zorg, an umbrella organization representing patient organizations in the province of Limburg (ES); an external PPI expert with a PhD in participatory research and personal experience of a long-term condition (MW), and a senior researcher who had gained extensive experience of patient collaboration in her PhD project at Zuyd University (BP). The team had regular face-to-face and Skype meetings to prepare for and reflect on the development of the PPI coaching programme and the community of PPI practice. The level of PPI pursued in this research team was that of partnership in every research phase: partnership in the sense of doing together and deciding together. The roles of the members were alternately those of initiator, educator, facilitator, coach and finally co-author.

| Action research and reflexivity
We used a participatory action research 26 methodology to facilitate the combination of developing a coaching programme for and with researchers and, at the same time, establishing a community of PPI practice. We applied the action research cycle of observe, reflect, plan and act. 27 Reflexivity was the theoretical orientation that guided us in the coaching activities as well as the analysis of the data collected and to a large extent also the participants in the meetings with their peers and mentors. We view reflectivity as a continuous dialogue and critical self-evaluation of our positionality, with the explicit recognition that this position may affect the learning process and outcome. 28 The coaching, data collection and analysis were interdependent and partly based on the project team members' interpersonal, social and institutional context. 29 We reflected on the development of a community of PPI practice, guided by Wenger's definition of a community of practice: a group of people "who share a concern or a passion for something they do and learn how to do it better as they interact regularly." 30 In our project, a community of PPI practice was defined as a group of researchers engaged in a long-term process of collectively learning how to conduct and improve PPI in health research. Collective learning took place through the development of a PPI coaching programme, comprising a variety of methods such as teaching, coaching, serious gaming and sharing. The purpose of this community of PPI practice was to facilitate a bottom-up process of gaining self-confidence and knowledge about PPI in research. This was done by encouraging researchers to exchange and discuss values and attitudes regarding PPI and to learn from each other how to do better, 31 but also by reflecting on the progress of the collaboration between stakeholders and on the changes required to the original approach and design of the coaching programme. In this way, reflexivity was consistently used during the individual and group meetings with participants, as well as during project team meetings.
We defined coaching as an activity that aims to support and empower researchers in developing their knowledge, values, attitude and skills regarding PPI in research. 32 As mentioned above, the development of the coaching programme was based on an emergent design process of co-creation in which a variety of learning methods were applied, such as plenary presentations, individual assignments, coaching sessions, individual conversations and coaching, and provision of background information. The development of the coaching programme took place simultaneously with the establishment of the community of PPI practice.

| Setting
The setting was the Research Centre on Autonomy and Participation

| Participants
Participants in the coaching programme were 11 senior and 9 junior researchers who were affiliated with the above research centre.
Senior researchers were principal investigators with a PhD degree, who apply for research funding and supervise projects. Junior researchers had less than 3-year research experience and carried out research activities, often working towards a PhD degree. In total, 74 persons were involved at different time points of the project, including over 50 participants at the kick-off meeting.

| Process of data collection
From April 2014 to October 2015, we used an approach involving participative research with an emergent data design. A multimethod process of data collection was used, which emphasized iteration between planning, acting, observing and reflecting, as recommended in action research. Data were collected by means of minutes and reports of formal presentations (n = 5), all interactive coaching sessions (n = 6) and regular project team meetings (n = 11). Field notes were taken at the individual meetings with participants

| Analysis
Data collection and analysis took place simultaneously. Our analysis was guided by a reflective process where data were analysed inductively. 33 We read and re-read reports, minutes, e-mail correspondence and field notes and reflected upon the data. First, we identified and selected relevant text fragments and assigned descriptive codes.
Next, we identified meaningful clusters within each data source and across the various data sources. We then compared, contrasted and reflected upon these clusters and pre-categories emerged, after which main categories and subcategories were formulated. This was a process involving the project team going back and forth between the data, coding and producing reflective accounts. We used the (preliminary) findings to guide the coaching programme and inform subsequent activities. Finally, we checked whether the categories were stable and provided sufficient depth. We applied multiple strategies to ensure trustworthiness (Table 1).

| Coaching programme
The coaching programme "Preparing researchers for user involvement" included a range of components to guide the participants in implementing PPI in their research projects. Table 2 provides an overview of the structure, aims and content of the programme. The main components of the programme were 6 coaching sessions with presession assignments, written feedback and several individual sessions.

| Preparing researchers for user involvement
In April 2014, a kick-off meeting was organized for a large and diverse audience including third parties like research assistants, lecturers involved in research, management staff and researchers from other research programmes. A masterclass was organized which functioned as the kick-off meeting for the coaching programme. During this masterclass, the potential added value of PPI was emphasized, followed by a discussion of best practice for patient involvement in the development of a patient-reported outcome measure. This best practice example elaborated on the different levels of PPI in different phases, based on the ladder of participation. The masterclass was videotaped and made available as an open resource. 34 The content of the coaching sessions that followed focused on the During the second coaching session, participants discussed the ideal design of PPI and implications for the recruitment and selection of patient representatives. Based on their own study, researchers were invited to write a role description for a patient representative, including a set of required competences. Participants learned that in some studies, the patient representatives involved do not have to be the same in all stages.
After this session, it became apparent that the interests and queries of the senior researchers deviated from those of the junior researchers.
The seniors not only indicated they did not have enough time to attend all coaching sessions, they also realized that their responsibilities were to advise, support and supervise juniors in doing PPI, rather than maintaining direct contact with patients. The group agreed to continue the T A B L E 1 Strategies to ensure trustworthiness of the study Method triangulation: we used multiple methods of data collection: minutes and reports, field notes, e-mail exchanges and video and audio records.
Researcher triangulation: multiple researchers reflected on the methods, analysis process and findings. We reviewed and discussed scientific and organizational aspects of the study within the research team.
Data triangulation: we used multiple data sources during the study to verify the results, such as junior and senior researchers and patients, various written documents and reflective and analytical notes.
Thick description: we gave a rich description of the study context and process to enable readers to judge whether the findings are transferable to other care and research contexts.
coaching programme in 2 separate streams, one for senior researchers, focusing on the establishment of supportive conditions for junior researchers and one for junior researchers, focusing on the practicalities of engaging patients in research projects. In Box 1, we reflect on the implications of this decision related to power issues.
One junior participant was reluctant to continue the programme.
However, after explaining that the programme would not prescribe what should be done, this researcher stayed and became more interested.

| Junior researchers
During the third coaching session for junior researchers, we introduced the participation game. This is a serious game that provides T A B L E 2 Coaching programme: Preparing researchers for patient and public involvement (PPI)

Patient research partners
Masterclass General introduction to concepts of PPI by an expert to set the scene N = 74 in total Individual assignment Researchers are asked to prepare for session 1 by preparing a brief presentation of their research project and the role of PPI.
Coaching session 1 Discussion on the added value of PPI in research and exploring the participants' expectations of the coaching programme.
Aims: (i) Discussing mutual expectations regarding the coaching programme; (ii) obtaining insight into one's own expectations regarding PPI and those of patient representatives; (iii) clarifying the different roles of senior and junior researchers; (iv) creating awareness about and sensitizing to PPI in research.

Individual assignment
Researchers are asked to prepare for session 2 a profile of the patients to be involved in their research project. an interactive and safe playing field for dialogue (see Box 2). The participation game aims to support researchers to identify the appropriate roles and tasks of patients throughout the research process. It is based on the model of the participation ladder 23 and has proved to be a helpful concept in the context of our programme to convey opportunities and options regarding PPI (see Figure 1).
We [

session recording]
We particularly collected structural challenges related to the research centre and forwarded these to the sessions of the seniors (Table 3).

Box 2 Serious gaming-the participation game
A matrix is laid out on the floor. The rows represent the level of PPI: information-consultation-advising-partnership and control.
The columns represent the phases of research. These phases might be subdivided into specific research activities. The facilitator explains the rules and addresses the group dynamics.
Researchers sit around the participation matrix.
The researcher whose turn it is describes the research projects, then in which research phase or activity they want to use PPI and why, and what participation mechanism they want to apply. He/ she takes a pawn and places it in the square he/she perceives as appropriate. During this procedure, the other researchers, who sit around the matrix, should not ask questions or discuss the explanations of the researcher whose turn it is. This encourages them to listen. When the researcher whose turn it is has finished, the other participants sitting around the matrix are allowed to 'enter' the game, ask further questions, discuss or give advice.
The researcher whose turn it is might then shift the pawns again.
At the end, a photograph is taken and the researcher whose turn it was has literally pictured the design of PPI, which he/she will develop further. This procedure is followed until each researcher has had their turn (see Pictures 1 and 2 and Figure 1). reluctant and did not want to go beyond the level of "asking for advice." The practical use of the participation ladder was an eye-opener, and the format of the game was experienced as helpful and enjoyable:  3. Uncertainty about the priority of PPI in the views of the research centre. How much time am I allowed to spend on PPI? Will I be supported by my superiors when input of patient representatives leads to changes in the design, conduct or outcomes of my study?
4. Lack of guidance on how to budget for meaningful PPI 5. Absence of a policy for remunerating patient representatives in research projects. For example: Is it possible to pay a symposium fee for a patient representative? Is there a budget for child care for a patient representative? Is it allowed to pay patient representatives for their involvement? And if so, what is a reasonable compensation?
6. Lack of guidance on recognizing the contributions of patient representatives, not only individually, but also at the level of the research centre.
7. Do regulations exist for acknowledgement or co-authorship of documents, brochures and scientific manuscripts?
shared practical tips. In some cases, they adjusted the design of PPI in their project during these coaching sessions. This resulted in 5 extensively described best practices for PPI, which were published in a separate booklet.

| Senior researchers
After splitting up the group into 2 subgroups, the senior researchers reflected on their role and responsibilities as supervisors of juniors and managers of research in the fifth coaching session. Because the seniors had realized that they did not have an answer to some of the barriers identified by the junior researchers (

| Concluding joint session of juniors, senior researchers and patients
The sixth and last coaching session was a joint session with representatives of all stakeholders, with the aim of encouraging direct dialogue between junior and senior researchers and patient representatives.
The presence of most of the senior researchers demonstrated their commitment and function as role models to illustrate the importance of PPI in research. All juniors and 3 patient participants were present.
Two patient participants could not attend. One senior referred to herself as a "newcomer" and preferred to follow the mainstream, as this role provided some safety.
The junior researchers mentioned that they had at first perceived PPI as very complex because it required a different responsibility in addition to the existing and partly simultaneous implementation activities.
They had learned from the coaching programme that they were able to multitask with PPI, and their research became more patient-friendly.

| Key learnings
During project team meetings, we reflected regularly on the barriers and facilitators for creating a community of PPI practices and identified helpful conditions for developing a coaching programme for researchers and designing and implementing PPI in daily research practice (Table 4).
Close collaboration with a regional patient organization proved to be of great value. The Huis voor de Zorg was a co-initiator of our project and has contributed much to the formulation of role descriptions and the recruitment of patient research partners. The commitment of the research programme leader, principal investigators, a clear vision on PPI and the assurance that junior researchers were allowed to make mistakes, turned out to be important facilitators.
We followed the adage of constructing the road while walking on it: we recommended that senior and junior researchers should start on a small scale and discuss opportunities and concerns with patients along the way. Coaching proved to be a feasible approach to building the programme and incorporating PPI skills training, building a supportive attitude towards PPI and imparting knowledge of PPI concepts and methods. For this reason, we did not pressurize senior and junior researchers to do something they were not familiar with.
We started from the comfort zone of researchers and then, by means of competence-based learning, gradually increased their expectations by exploring the boundaries of their comfort zone. This endeavour required a balanced approach that taught them the evidence-based concepts of PPI while at the same time respected the contextual factors that are important in conducting PPI. We believe that focusing on the context and particularities of the research projects avoided drop-out.
We also learned the importance of differentiating between the tasks and responsibilities of senior and junior researchers. As introduced in the FIRST model 5 and elucidated in a follow-up study, 7 supporting PPI is not the same as facilitating. Providing this coaching programme is an example of facilitating PPI, meaning that the institute's leadership acknowledged the need for PPI coaching for researchers, and assumed responsibility for providing the resources to make this happen.

| DISCUSSION
Nowadays, researchers are expected to include the voices of patients in their projects, but acquiring the necessary competence to engage patients in a meaningful way is seldom integrated in their curriculum. In this article, we have described an interactive and iterative approach to PPI coaching development using action research and at This study also has a few limitations, which can inform the future We conclude that a stepwise approach, based on action research, coaching and dialogue between peers, empowers senior and junior researchers to acquire concepts and tools to engage patients in a meaningful way. We recommended distinguishing between the roles and responsibilities of senior and of junior researchers.