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Research Article

Patient/public perceptions on engagement with a medical school: What needs to happen to support authentic and sustained participation

ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon
Received 10 Jul 2023, Accepted 28 Nov 2023, Published online: 10 Dec 2023

Abstract

Purpose

Patient/public involvement in health professional education is increasing but remains episodic, narrowly focused, reliant on individual enthusiasts, and lacks supportive institutional infrastructure. There is little evidence-informed practical guidance on how to take a more strategic and formal approach. We undertook a qualitative study to learn from patients and the public how medical schools could engage in an authentic and sustainable way.

Methods

In 2022 we conducted eight focus groups with patients and members of community organizations. Participants were asked about experiences and perceptions of what needs to happen to enable and support them to participate in medical education, barriers to authentic engagement, and how they might be overcome. Recordings were transcribed and data coded inductively. A summary report was circulated to participants for validation of findings.

Results

The focus groups were attended by 38 participants representing a wide variety of perspectives. Participants provided practical suggestions that we categorized into six major themes: inviting participation; preparing for participation; supporting participation; increasing and supporting diversity; recognizing participation; institutional buy-in and support.

Conclusions

Individual instructors can enhance authentic patient engagement through recruitment, support and recognition practices. Institutional commitment is required to sustain and widen participation through funding, policies and infrastructure.

Practice points

  • Medical schools need evidence-informed practical guidance on how to take a more strategic and formal approach to engaging with patients and the public.

  • Individual instructors can enhance authentic patient engagement through recruitment, support and recognition practices.

  • Institutional commitment is required to sustain and widen participation through funding, policies and infrastructure.

Introduction

There is clear evidence of an increased focus on patient/public involvement (PPI) in health professional education, including several recent theoretical studies (Rowland et al. Citation2019; Lefkowitz et al. Citation2022; Bennett-Weston et al. Citation2023) and reviews that document an expanded range of involvement (Dijk et al. Citation2020; Gordon et al. Citation2020). This interest is driven by several factors, including government policy to promote patient involvement in making decisions about their care to improve health outcomes; increasing emphasis on social accountability and the social mission of medicine; evidence of benefit to student learning through promotion of empathy, patient-centredness and interprofessional practice; patient motivation to contribute to society; and expectations for PPI in health service planning and research (Manafo et al. Citation2018; Dijk et al. Citation2020; Gordon et al. Citation2020; Kline et al. Citation2020; Alberti et al. Citation2021).

Patients can successfully play a variety of educational roles including teaching, assessment, course and curriculum development, and student selection (Dijk et al. Citation2020; Gordon et al. Citation2020). However, most PPI in health professional education is still episodic, narrow in focus (both with respect to people and roles), reliant on individual enthusiasts, and lacks supportive infrastructure (Gordon et al. Citation2020; Cullen et al. Citation2022). This is despite calls for academic medical institutions to create ongoing pathways for listening to, and learning from, the needs, lived experiences, perspectives and wisdom of patients, families, and communities (Alberti et al. Citation2021). Institutional vision and investment in a strategic framework are needed to ensure that PPI is embedded throughout health care education programs at an institutional level (Cullen et al. Citation2022).

There is little practical guidance on how to address this need for a more strategic and formal approach to ensure that PPI becomes sustainably embedded in health professions education. There are numerous scholarly articles and practical guides designed to help health care leaders and managers, practitioners, and patients and families work together more effectively in health service delivery, quality improvement and research (see, for example, Canadian Patient Safety Institute Citation2019; Smits et al. Citation2019; Association of American Medical Colleges Center for Health Justice). These guides draw on best practices of engagement and apply them to specific areas of health care such as patient safety, patient-oriented research or the planning of specific services. However, there is far less evidence-informed practical advice related to PPI in medical education, a context which has its own unique engagement challenges (Towle and Godolphin Citation2015; Brahmaputra et al. Citation2022; Eijkelboom et al. Citation2023). The ‘Twelve tips’ of Brahmaputra et al. (Citation2022) and Eijkelboom et al. (Citation2023) were generated respectively based on experience, and through a collaborative process, rather than rigorous research. In both cases the tips are provided as a somewhat random list without any underlying organization. There is little overlap between the two lists. While these tips are useful, both sets fail to acknowledge the barriers or challenges of engagement from the patient perspective, and potential solutions.

The question we address in this paper is what do patients and the public think needs to happen to enable and support PPI with a medical school, and overcome barriers to authentic engagement?

Methods

Study design

This qualitative study of patient experiences and perceptions was part of a larger participatory action research project to co-create with patients and the public a set of evidence-informed guiding principles, models and processes for their authentic, responsive, ongoing and sustainable engagement in the mission, goals, curriculum and delivery of medical education. The larger study comprised a literature review of practical guides to engagement, an environmental scan of expert informants, and a set of patient/public focus group consultations. In this paper we report the thematic analysis of data from the two focus group questions that explored facilitators and barriers to authentic PPI in the context of engagement with a medical school.

Focus group recruitment

Recruitment criteria were based on the priority populations identified by the provincial government of British Columbia and the University of British Columbia (UBC) Faculty of Medicine (https://mdprogram.med.ubc.ca/about/) and included individual patients, patient groups, and patient representatives or advocates (Williamson Citation2007). Where possible, recruitment was based on existing relationships with individual patient and community organization contacts. Invitations were sent by e-mail to 25 people who had been invited to participate in a previous public consultation on the priority health concerns in British Columbia who met the recruitment criteria (Towle et al. Citation2020a). Thirteen responded and attended one of three focus groups. Participants were mapped to the priority populations () to identify gaps. People from rural and remote communities were recruited through patient program managers at the regional campuses of the medical school. Relevant organizations that had not previously been involved in the public consultations were identified through existing contacts or Internet searching. E-mail invitations to a second round of focus groups were sent to 11 individual patients and 24 organization representatives. The research was approved by UBC Behavioural Research Ethics Board (3 November 2021, H21-02376).

Table 1. Focus group participants mapped to priority populations.

Data collection

The focus group protocol and questions were adapted from ones used in previous public consultations (Towle et al. Citation2020a). This paper reports data from two of the focus group questions:

  • What needs to happen to enable and support community members to participate in medical education/engage with the medical school?

  • What are the barriers to authentic engagement (real and potential)? How might they be overcome or reduced?

An initial focus group was held with three public members on the project Steering Committee and four members of the UBC Health Patient and Community Advisory committee, all with long-standing involvement in health professional education at UBC, to test the protocol and questions. Between April and May 2022, we conducted eight focus groups lasting approximately 90 min, each by Zoom videoconferencing. Apart from the initial focus group, all had either four or five participants. Participants received in advance the consent form and background information about the project. AT facilitated all the focus groups with one of KO and LW (student researchers) observing and providing technical support. At the beginning of each focus group, participants were welcomed, reminded that the session would be recorded but that they could request the recording to be paused at any time (so their responses would not be included in the data analysis), and reviewed best practices for virtual focus groups.

Data analysis, member checking and validation

Recordings of the focus groups were transcribed verbatim. The data were coded inductively. Since there was considerable overlap in responses to the two questions, they were coded as a single data set. The first three focus groups were coded by both KO and LW, with coding being validated between coders after each focus group through team meetings. All subsequent focus groups were coded by either KO or LW. Excel was used to code and organize the data. New codes were assigned a value of ‘NC’ (New Code) and discussed between KO and LW. After the initial coding process, the codes were separated into categories based on broader theme categories. Illustrative quotes were identified for each of the categories.

A draft report was circulated to all participants in the consultation with a request to provide feedback and confirm the listing of their names and affiliation. Responses were received from 19 participants, including 13 who commented that they thought the report was very thorough and reflected the rich input from diverse voices. Minor edits were incorporated into the report.

Results

Description of participants

The eight focus groups were attended by a total of 38 people. The estimated age range was ‘mid-20s’ to post-retirement. Seven participants were male, 27 female, and four of unknown gender. Fourteen were individual patients (not representing an organization) and 24 were representatives of an organization. Organizations represented ranged from grassroots, peer led organizations to provincial chapters of national organizations; 17 had a provincial mandate and 7 were local to the Vancouver area. Examples included BC Hepatitis Network, Developmental Disabilities Association, Vancouver Women’s Health Collective and BC Patient Safety and Quality Council. 28 participants had previous or current involvement with UBC’s distributed medical school, medical students and/or other health professional students. The remainder had experience engaging in health care planning and/or research. See for examples of perspectives represented mapped to the priority populations.

Focus group responses

We identified six major themes: (1) inviting participation; (2) preparing for participation; (3) supporting participation; (4) increasing and supporting diversity; (5) recognizing participation; (6) institutional buy-in to support sustained participation. The themes and their sub-themes are summarized in and described in detail below, along with illustrative quotes.

Table 2. Summary of themes and subthemes from the thematic analysis of focus group data.

Inviting participation

Awareness of opportunities

Participants told us there are many people who might be interested in participating but do not know about the opportunities. They identified the need for better public awareness of the importance of patients in the process of medical training, the different opportunities to participate, and benefits of participating.

So just even having that awareness that there is a way for us to participate and give back to the medical system and also essentially help others that are like us. I think that’s a really important first step. [S4FG6]

Role of organizations

Community organizations were identified as potential partners in efforts to find the right people for different engagement opportunities as they know their members and can facilitate connections.

Here’s the thing about engaging with people. You’re more likely to get them if a trusted person, people or organization introduce the ask first. By leveraging relationships that already exist you might have a better recruitment strategy… Organizations can be that pivotal introduction level… Because we’re playing that intermediary role, people are more likely to say yes to the opportunity versus like a cold call or an email. [S3FG7]

Ease of participation

Invitations to participate need to recognize that patients already have enough to do managing their health, care and life. For example, there need to be realistic time expectations, as well as convenient times of day and locations. Communication needs to be concise. University bureaucratic processes that are slow and require lots of paperwork should be kept to a minimum.

Try to put the information in a short amount of words as possible. The reading of information can be a lot and it can be daunting and if we think of patients and the amount of paperwork that they have to do on a regular basis, having more paperwork when they just want to give back is additionally daunting and can be confusing. [S2FG1]

Benefits of participation

Invitations need to indicate the benefits to participation so that people are motivated to become, and stay, involved. Examples of benefits included knowing their participation could make a difference, as well as opportunities for personal growth and new connections.

To know that something tangible is the outcome of the work that they are doing… So what does that mean long-term in the education of those medical students and not just we heard a lovely story this one time from this person and that was great? [S3FG3]

There has to be some type of value… it could be that they received some training or some other educational type benefit where they learnt something. [S1FG8]

You make new friends, you make new connections with people and you hopefully inspire and at the end of the whole year when they’re showing you gratitude it’s one of the best feelings out there and that they’re so grateful you’ve shared your parts of your stories with them. [S2FG8]

Preparing for participation

Clear communication of expectations

Participants emphasized the need for clear communication of the purpose, what is expected of volunteers, what they can expect from the medical school in return, and what are the anticipated outcomes. This is especially important for people who are managing chronic health conditions or complex life circumstances and need to make decisions about where to put their energies.

If you’re living with chronic illness you have only so much energy that you have available and so I know for myself I think of it as I don’t want to write cheques with my mind that my body can’t cash and so there’s always that fine line between how much can you do and how much is too much. [S2FG8]

Having a clear outline of the time commitment that this is gonna be. Like is it gonna be five meetings at two hours each, or is it going to be one meeting, one prep meeting at an hour, and then the day of the event, so that I can gauge, okay I can commit to this or I can’t commit. And to be realistic in what that time commitment is for that engagement. [S2FG1]

Information and orientation sessions

These should be offered to prepare patients for what to expect. It is a good idea to give time to answer questions and ask individuals what kinds of specific supports they need so that information can be tailored to different needs. A good orientation might also include an opportunity to observe others and visit the space where the activity will take place.

I think even almost before an orientation I’d just like to chat with somebody, just sit down one-on-one so I don’t feel any pressure or anything else and just kind of find out what it’s about. And then you could move to the orientation session, but I thought as part of an orientation session it’d be interesting for me to …watch one of the other volunteers. [S1FG5]

Knowledge of curriculum

Familiarity with the curriculum and the learning context was also deemed to be important preparation for good engagement with students.

What is my, my audience, where have they been? What have they been exposed to? Where are they in their training in a really specific way, so I can tie what I say to what happened yesterday or last week or in a previous encounter of this topic. And then I can hand off to what’s happening next in their training this afternoon or tomorrow or next week. [S5FG1]

Supporting participation

Safe and welcoming environment

Participants emphasized the need for the medical school to recognize that sharing personal experiences authentically makes patients vulnerable.

We had to be really careful that we weren’t putting them in a position of… they called it poor, ‘poornography’. We didn’t want them to come into a workshop and to essentially emotionally bleed all over the place for everyone to watch and witness. [S3FG2]

Some patients fear that what they really want to say will be deemed too controversial. Others may feel intimidated by the setting. Safer and welcoming (including culturally safe) spaces and support could be provided by the medical school in the form of asking people what they need, welcoming introductions, setting boundaries, a follow-up check-in.

Welcoming and orientation go hand in hand. If you say don’t worry, we will walk alongside you and we will make sure that you know what to expect at every step, you won’t be left hung out to dry and you’re gonna have somebody to support you… ‘cause so many people in my experience are really intimidated in medical settings, universities, especially if they don’t come from that background themselves. [S1FG7]

When we’re talking about keeping people safe and they’re talking about personal things, the things that have happened to them, there needs to be a protection or sort of boundaries set for that individual to feel free what their boundaries are, what they will and will not talk about. [S6FG1]

Instructors leading or facilitating the session need to be prepared for their role in creating a relationship and a welcoming environment, as do students.

Having some of that dialogue with students about how privileged they are to be able to bear witness to someone sharing their story and that they should honour that. [S2FG2]

Peer support

The need for support is especially important for people who are the most vulnerable or marginalized in the health care system or in society more generally. In these cases, having a familiar support person present (e.g. from a partner organization), or creating or facilitating peer group support is important.

Focus groups or pods where people feel less isolated, where there are other members of their community so they don’t feel like they’re the only person with a certain lived experience trying to talk about an issue. [S2FG7]

I think having a mentor, having a coach, that kind of companion for preparation and maybe even evaluation and debriefing… someone who’s going to travel with you as you learn how to do this and hopefully learn how to do better. [S5FG1]

Technical/administrative support

Technology can be both an asset and a barrier to connectedness.

Technical support was identified as being helpful so that patients can focus on sharing their experiences not managing microphones or slide decks. People in rural/remote areas need technical and administrative support to feel connected.

Increasing and supporting diversity

Perceived lack of diversity

Participants perceived a lack of diversity among the patients/public who are involved, or would be able to get involved, in the medical school. They said that members of their communities do not often see themselves represented among the students, faculty, staff, or patients involved at the university, which is a barrier to participation. The most likely people to volunteer are those with the most time and money, living in urban areas, and from a narrow demographic. They are the ones who have the time and means to volunteer, e.g. during the day.

I think that sometimes we have a habit of going back to the same sort of homogenized, majority voices that are not representative of minorities or condition groups. [S3FG1]

Barriers to participation

Participants identified significant barriers to participation among groups that have traditionally not been well served by educational or health institutions. These include lack of trust, fear, intimidation and alienation, real or perceived experiences of stigma, and feelings of disempowerment.

But some of the barriers are very, very cultural where you have some groups where there is a very deep-seated fear of, not just the health care system, but even the educational part of the health care system is very, very intimidating and daunting and they often feel disempowered. [S5FG5]

Community outreach

There is a need for people at the university who are recruiting to understand how to reach different groups. This might include having dedicated people within the university who have specialized knowledge of under-represented communities and can serve as brokers between the university and community.

Ensuring that those responsible or those tasked with recruiting that participation have a high, high degree of cultural intelligence… because how it is that we promote and encourage participation from a youth population or an elderly population is going to be incredibly different. [S5FG5]

Another solution is to work with a community organization to increase/establish trust and communication. However, there is a risk that the organization may filter certain voices.

There’s quite a few non-profits who have approved people that they will put forward for consultation who are kind of the nice kind of people with mental health issues so they’re usually post-recovery, they’re not currently using substances, and they aren’t angry, they aren’t, you know, XYZ… I know that when it’s strictly from non-profits who have filtered who is coming into their room, there is less trust in that process. [S4FG2]

Widening participation might also require leaving the ivory tower and going into the community instead of expecting the community to come to the university. Also, having flexibility in the medical program with respect to time and location.

Bring the students to the people instead of having the people moving over to [the university], that’s a big dream. [S2FG4]

Maybe creating some different types of spaces for people to participate and it doesn’t always have to go to a classroom necessarily. Like people can meet in a coffee shop or whatever’s the mutual convenience to people. [S1FG8]

Accessibility protocols

Protocols could be developed to include a support person, childcare, accessible spaces (parking, washrooms, pee patches for service dogs, etc.), interpreters, special dietary needs, small group settings, etc. There are cost/resource implications for increasing representation/diversity.

…transportation is important for some individuals, payment to get to and from. Food security is important… For some people it’s childcare and making sure that the place is actually accessible for them to be in… and is there parking there for people with disabilities and is it close by? Once you’re there is there somebody that you can ask questions of, or if you need support, get support? If you are visually impaired or if you are deaf and hard of hearing, are there services there to support you so that you can fully participate? [S4FG4]

Technology

Participation through virtual groups or recordings, rather than in-person sessions, may increase accessibility for some, but may be a barrier for people who do not have access to computers or reliable Internet, or who have communication difficulties. Many participants linked accessibility with the need to communicate in plain language.

I think it’s really important to talk about communication needs and what that looks like. So, for example as a neurodivergent person, Zoom is so much better for me than phone calls. [S4FG2]

Recognizing participation

Monetary compensation

A majority of participants spoke to the need for adequate monetary compensation and other forms of recognition for participation. Three points were made: i) recognition of the value/expertise that patients bring; ii) recognition that their contributions are a form of emotional labour; iii) the only way to include people who cannot afford to volunteer is to offer payment. No-one should be out of pocket, so costs such as parking and transportation should be covered.

I think any time you’re getting someone to share a lived experience, they are the expert on the subject matter of their own lived experience and they need to be fairly compensated for the work that they are doing because at the end of the day emotional work is work. [S3FG3]

People should be paid as well. I think that’s a huge thing from the disability perspective. So many organizations bring in non-disabled people and pay them huge consulting fees and then they offer a cup of coffee to disabled people who are doing kind of the hard work of opening up their experiences. [S4FG2]

My family, we can afford to have me volunteering or giving my time up without a money involvement… There are some folks that need that support with money ‘cause maybe they need to get food on the table or they do need someone to look after their kids. So that if we’re trying to get a broader base of individuals engaging we need to think about what their barriers are. [S2FG1]

One participant cautioned that monetary payments can have consequences that need to be mitigated.

Reminding them partway through that you don’t have to share, you only share as much as you want to, you can stop whenever you want, ‘cause often times I remember even myself and other folks that we work with, we get paid to talk somewhere and we feel like we have to answer. [S3FG2]

Payment choices

People need to be offered options, e.g. cash, or gift cards, or a gift, or something else that is of value so that they can choose the type of compensation that best fits their personal circumstances.

…if they’re being paid, do they have a choice of how they’re being paid? When we think of people that can’t cash a cheque, or if they’re going to Money Mart, they’re going to lose this much money or they freak out because they figure they’ve made too much and Social Services is going to take that amount from them. [S3FG4]

Other forms of recognition

Other examples of ways in which contributions can be recognized were suggested including thank-you cards or e-mails, copies of reports, certificates and end-of-year appreciations.

Institutional commitment to support sustained participation

Skepticism about long-term commitment

Skepticism about whether the medical school is genuinely serious about sustained PPI was voiced by those who had not been involved (who were generally skeptical about powerful institutions, or felt excluded because they are in more remote areas of the province, or perceive that patient engagement is the flavour of the day in health care) and also by those who had a lot of experience in different roles.

To know that there’s a commitment above and beyond just me asking you this one time to provide insight and then never hearing about it again until somebody gets the great idea to ask what the North is doing. Hey, didn’t you ask that five years ago and what did you do with it then? [S4FG7]

One of the white elephants would be when senior bureaucracy doesn’t totally believe in the concept and so it is the ‘yeah, yeah’ lip service but the walk isn’t there with the talk. Coming into it you know the person that’s invited you is engaged but you soon figure out the higher-ups are not. That is sometimes a barrier to figure out is it worth my time to continue? It’s not so much what I do in the classroom setting ‘cause you’re gonna do your 100 percent there. But when you walk away and you go back to your organizations, you’re like, you know what, it’s not worth our time because this staff person isn’t supported in this mission. [S1FG1]

Skepticism about readiness to change

There was also skepticism about the medical school’s readiness to hear and act on hard truths about health care deficiencies and lived realities of people who have not been well-served by the medical community.

Often when we share our stories, we have to control our emotions, we have to edit these stories in order to make the people in the room comfortable, in order for them to listen to us… All too often the consultations ask us to divide ourselves and only represent certain parts of ourselves or have a sanitized version of our stories. [S4FG4]

Participants want to believe that their involvement is valued at the highest levels of the institution, that the medical school is committed to ongoing and meaningful engagement, and that patients/public are contributing to systemic change, not only sharing their experiences with students.

Like to say that you had community involvement, to say that you had someone with a disability come talk to the class, to say that you had someone come share their story or you learned about this and you did this, but if none of it is for a purpose, it’s not for an outcome, it’s not going to achieve some kind of end goal, it doesn’t mean anything to me. [S3FG3]

But even more, even besides the compensation piece, I’m still in my head going, okay so what, what’s the payoff here? Like I’m gonna go in, talk about my most likely not great experience with the healthcare system, yes that these kids might learn from that and maybe be different when they go out into the world as doctors… Most people just want to see, even if it’s minimal, changes in the way care is delivered that will support a more person and family centered approach. If it’s specifically about the learning of the students, how does that actually practically apply when they get out into their internships, their practicums and everything else they do in the world? How are they going to spread this? What’s your measurement gonna be around that? Some real stuff that you can point to and say this has made a real difference and this is how it’s made a difference. [S1FG3]

Participants questioned whether the medical school was ready to provide the kinds of supports needed for systemic and ongoing engagement with the diverse populations they have a mandate to serve.

What is the medical school going to invest in ensuring that people are supported well so that it’s not just a come in, share my story and then you go home. [S2FG3]

Indicators of institutional commitment

These include support for faculty who want to engage patients, a dedicated staff person to facilitate engagement, preparation for students and follow up communication, as well as the practical supports suggested previously.

Our communities are consulted all the time and it is truly exhausting how often we are consulted… I also know that a lot of our members are done because they’ve been to so much consultation and nothing comes from it… so often people are asked to perform their trauma and then nothing else is given back to them. [S4FG2]

Discussion

The participants in the study provided many practical suggestions for engaging patients and the public in medical education in an authentic and sustainable way. These suggestions are grouped into six major themes starting with the invitation to participate, through recruitment, support and recognition, and finally the importance of institutional buy-in. They differ from the list of twelve tips of Brahmaputra et al. (Citation2022) and Eikelboom et al. (2023) in being more rigorously developed and organized, and in revealing the barriers and challenges to engagement.

In our study patient/public participants provided suggestions that can be implemented by individual instructors and others that require an institutional level response. Ideas that can be implemented by an individual instructor include: i) approaches to recruitment, especially through community organizations; ii) the need for clear, concise descriptions of expectations, including role, time commitment, support provided, renumeration; iii) support for patient educators by providing timely information (e.g. about parking), a welcoming and accessible environment, and by preparing the students; iv) recognition of patient/public contributions, including thank-you notes and sharing the outcomes of their participation (closing the loop).

The one area that both Brahmaputra et al. (Citation2022), Eijkelboom et al. (Citation2023) and our study agree upon is the need for institutional support and commitment. However, our participants were generally skeptical about whether the medical school is genuinely committed to sustained and authentic engagement that goes beyond individual patients sharing their experiences with students. They questioned the readiness of medical school leaders to hear hard truths about the realities of people’s experiences in health care, and their willingness to engage with patients and the public for systemic change. Ways in which the medical school could demonstrate its commitment at the institutional level would be through funding, policies and infrastructure. These include: i) consistent and transparent policies for renumeration, as well as streamlined practices for reimbursement; ii) dedicated staff to organize recruitment and patient support; iii) recognition and support for faculty who engage patients in their educational activities. These are complex issues. For example, remuneration is important to recognize the unique expertise and contributions of people with lived experience, but needs to be aligned with other forms of demonstrating respect (Soklaridis et al. Citation2020). Widening participation and increasing diversity will require additional resources from the university in the way of dedicated people who have specialized knowledge of under-represented communities; working with organizations and going into the community; commitment to building long-term mutually beneficial and respectful relationships; development of policies and practices that permit more flexible times and locations for engagement; and accessibility protocols.

Building relationships with community organizations is important, especially to facilitate more diverse and sustainable PPI. Organizations can assist with the recruitment of people who may have barriers to participation and distrust of institutions, and provide peer support. For community organizations, engaging with the university is seen as a good thing to do and offers both short- and long-term benefits (Towle et al. Citation2020b). For academic institutions there are also benefits of partnerships between community organizations and academic health centres, but also a history of mistrust and some skepticism on both sides about the value of community-academic partnerships that needs to be overcome (Boutin-Foster et al. Citation2008). One way this might be achieved is through creation of a broker or boundary spanning role or unit to help institutional leaders build mutually beneficial relationships with community partners (Weerts and Sandmann Citation2010).

A limitation of the study is that participants needed to be adept with technology and virtual meetings, and have access to reliable Internet connections. However, by that stage of the COVID pandemic many people had been accessing health care virtually, and we did not have potential participants say they were unable to take part in the study because of technology. We had limited success in recruiting participants from diverse cultural groups and recent immigrants, which is reflective of their under-representation in PPI generally. Another limitation is that the study was conducted with people drawn from a specific geographic area (British Columbia) and in the context of engaging with a medical school. The practical suggestions are not specific to our medical school and have application to any academic institution wishing to engage patients in medical or health professional education in an authentic and sustainable way. However, more studies are needed to ask communities where there has been engagement for many years about what works well and does not.

In conclusion, individual instructors can enhance authentic PPI through recruitment, support and recognition practices. However, institutional commitment, as demonstrated through funding, policies and infrastructure, is required to widen, deepen and sustain engagement.

Acknowledgements

We wish to thank the patient and public members who participated in the study for their thoughtful responses. We also thank members of the steering committee for their expert advice, especially patient/public members Carolyn Canfield, Darren Lauscher and Sue Macdonald; medical school faculty Cary Cuncic, William Godolphin, Cheryl Holmes and Maria Hubinette; and student Jordan Yuen-Williams.

Disclosure statement

The authors have no declarations of interest to report.

Additional information

Funding

This research was funded by a Royal College of Physicians and Surgeons of Canada/Associated Medical Services CanMEDS Research Grant.

Notes on contributors

Angela Towle

Angela Towle is Co-director of Patient & Community Partnership for Education (PCPE), Office of UBC Health at the University of British Columbia. PCPE has a research and development focus on patient involvement in health care decision-making and health professional education. Angela is also Associate Professor in the Department of Medicine.

Kenneth Ong

Kenneth Ong is a medical student at the Vancouver-Fraser Medical Program, University of British Columbia (UBC). Prior to medical school, he completed an undergraduate degree in behavioural neurosciences at UBC and worked with the Provincial Health Service Authority on improving patient data connectivity.

Lucy Wang

Lucy Wang is a medical student at the University of British Columbia in Vancouver, Canada. Prior to medical school, she completed a bachelor’s degree at McMaster University studying child health.

Cathy C. Kline

Cathy Kline is Assistant Director, Patient & Community Partnership for Education, University of British Columbia (UBC). Cathy manages research and development initiatives that promote patient and public involvement in health professional education and has helped to build a network of over 150 patient educators and 80 community organizations at UBC.

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