What are the characteristics and impacts of a patient-led conference? A qualitative study

Abstract

Background

Patient engagement is the practice of “meaningful and active collaboration [of patient partners] in governance, priority setting, conducting research and knowledge translation.” Patient engagement has been implemented in various settings including clinical, research, and quality improvement, with varying levels of patient contributions and decision-making responsibility. However, little is known about the experiences of patient partners who are in leadership roles in patient-led events. For Patients, By Patients (PxP) is an annual, virtual, patient-led conference that focuses on topics important to patient partners in research. Each year’s PxP steering committee is comprised of those with patient experiences and consequently, offers an opportunity for our research team to explore patient leadership within a conference setting. Understanding more about the intricacies of patient-led events is necessary if we wish to support patient leadership as a valuable form of patient engagement.

Objectives

The aim of this study was to explore (1) the benefits and challenges experienced by PxP steering committee members in a patient-led event and (2) how to better support patient leadership.

Design

We conducted a qualitative descriptive study of semi-structured virtual interviews with PxP conference steering committee members. Thematic analysis was used to identify core themes that were salient to the data.

Setting

The Canadian Institutes of Health Research-Institute of Musculoskeletal Health and Arthritis in Vancouver, Canada, and an international virtual setting via Zoom from January 2025 to April 2025.

Participants

Purposive sampling was used to conduct interviews with thirteen PxP patient partner steering committee members.

Results

Four core themes were identified in the data: (1) institutional support: how institutions can support patient leadership, (2) steering committee environmental characteristics: what characteristics are conducive to patient leadership, (3) personal growth: how patient leadership promotes growth among patient partners and (4) new possibilities: how patient-led events foster future expansion and opportunities. Power dynamics, intersectionality, and accessibility were also identified as central to supporting patient leadership and building safe and supportive environments.

Conclusions

Patient partners are capable of leading events which promote interpersonal relationships and advance patient engagement practices and governance. Important facilitators include institutional support and governance that considers power dynamics, accessibility and intersectionality.

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• Using descriptive qualitative design, we report the experiences of patient partners who were leaders (steering committee members) of a patient-led conference.

• We recruited 13 of 17 eligible conference leaders via purposive sampling for in-depth interviews.

• Patient researcher partners were a part of the of the study from start to finish and co-led interviews and the descriptive thematic analysis.

• Our findings are drawn from 2 years of an annual virtual patient-led conference; their transferability to other patient-led events should be judged with reference to contextual features that may be similar or distinct.

Introduction

Patient engagement, the practice of “meaningful and active collaboration [of patient partners] in governance, priority setting, conducting research and knowledge translation”,¹ has been increasingly recognised and valued as a core component of quality research.²,⁴ There have been calls from research communities and patient partners to have patients hold leadership positions within healthcare, research teams and grants.⁵,⁹ However, patient leadership (ie, patient partners leading research, events, conferences and governance) is still an emerging area and there are very few published examples of current best practices for patients leading and holding power in the research ecosystem.

Patient leadership aims to build on the patient engagement spectrum to promote patient partner autonomy and ability to influence or direct decision-making.⁷¹⁰,¹² Patient leadership is also referred to as consumer leadership in Australia or patient and carer leaders in the UK.^{6 13} Those in leadership roles are “recognised as service leaders, equal in esteem and influence to managerial and clinical leaders” where they are treated as equals and not tokenised.¹³

Despite calls for patient leadership from patient partners and members of the research community, the practice of patient leadership is not well characterised or defined. With varying opinions on how to best implement patient leadership,¹⁴ clarity of concept is essential. However, patient leadership is poorly represented in the literature, which tends to focus on more “traditional” engagement roles, such as consultation and co-creation.¹⁰ While there is knowledge of patient leadership experiences held within the patient partner community, this evidence base continues to be poorly accepted by others in the academic space.¹⁵,¹⁷ Outside of previous literature detailing our own event, we found no literature on patient-led conferences about patient engagement in research.¹⁵,¹⁸ Furthermore, in other disease-specific events with patient leaders, the speakers were almost exclusively health professionals—patient conference leaders seemed to choose the speakers (often healthcare practitioners) but did not appear to have a clear speaking role in the programme.^{16 17}

The annual international, virtual, ‘For Patients, By Patients’ (PxP) conference, that began in 2023, is a patient-led conference. Rather than focusing on any particular disease(s), PxP focuses on patient engagement in research. The PxP conference infrastructure and funding is supported by the Canadian Institutes of Health Research (CIHR)—Institute of Musculoskeletal Health and Arthritis (further referred to as the Institute). Information on the structure of CIHR and its thirteen institutes can be found elsewhere.¹⁹ To ensure patient partners had the autonomy to make decisions, they were intentionally kept at arms-length from the Institute. With support from the patient partner facilitator, the content and speakers for the conference were decided upon by the patient partner steering committee (SC) (ie, decisions were entirely patient led). A horizontal leadership approach (ie, where leadership roles are shared) was used to ensure SC members could come to decisions independently and collaboratively, with minimal input from the Institute.^{20 21} Both SCs were comprised of approximately 8–10 patient partners from around the world who have been involved in health research as patient partners. Further details on how the PxP conference was established and run are described elsewhere.¹⁸

Because there is little literature on issues such as the challenges that patient leaders have in their roles in research, how they resolve conflict, whether they perceive power imbalances, we endeavoured to focus on the experiences of patient partner SC members from two cohorts of the PxP conference. Our aim was to explore (1) the benefits and challenges experienced by PxP SC members in a patient-led event and (2) how to better support patient partners in leadership positions.

Methods

Our study followed a descriptive qualitative research design, appropriate for underexplored phenomena and work that prioritises detailed description of experience over theory-building or abstraction.²² We have also followed the Consolidated Criteria for Reporting Qualitative research guidelines to increase the transparency of our findings (see online supplemental file 2).

Participants

We conducted purposive sampling of participants following information-power sampling approaches,²² to explore the leadership experiences of SC members from North America, Europe, Africa and Oceania who were involved in the international annual PxP patient-led conference. All SC members (n=17) from the 2023 (n=9) and 2024 (n=8) PxP Conferences were invited via email by the Project Lead (TM) to participate in the study. Of the total combined 17 members from both years of the SC, 13 gave written consent and were recruited into the study, two expressed interest but subsequently did not respond, and two did not respond to invitations to participate.

SC members joined the PxP SC with varying degrees of prior patient engagement experience (eg, number of past patient experiences in healthcare and research, living in places where patient engagement is new vs established, and whether those patient engagement experiences were positive or negative). These differing degrees of experience were captured in our sample. As SC members, participants brought patient partner perspectives, among others, to their PxP leadership roles. Prior experiences often served as an explicit point of comparison for SC members, and may also have served as a subconscious point of reflection, when discussing their SC experiences, what the PxP had done well, as well as areas for improvement. Because PxP was patient-led, the SC members (ie, patient leaders) were well equipped to comment on their experiences and provide novel insights into patient leadership in research.

Study setting and data collection

This study was conducted between January 2025 and April 2025. A semi-structured, open-ended interview guide was co-developed with patient researcher partners, KS and AS. Interview questions aimed to shed light on participant experiences of the PxP SC, definitions of patient leadership, barriers and supports that facilitated leadership during the conference, and how institutions can support patient leadership in the future (see online supplemental file 1).

Examples of participant interview questions included

1. In your own words, how would you define something that is patient-led?

2. Can you tell us about your experience on the PxP SC?

3. Do you think PxP was patient-led?

In-depth virtual interviews with SC members were conducted in English and co-led by TM with either KS or AS. Interviews were a median of 55 (46–63) minutes in duration and took place virtually on Zoom. For their participation, participants were offered an honorarium in accordance with CIHR-IMHA Patient Partner Compensation Guidelines.²³

To manage potential influence, both patient research partners were asked to disclose possible conflicts with study participants. In instances where a conflict was identified, the interview was scheduled with the alternate patient research partner. There were no instances where both patient research partners identified a conflict with the same participant. Enrollment was led by TM, keeping the PxP SC facilitator blind to enrollment and excluded from recruitment procedures to minimise social desirability and ensure there was no pressure to participate.

Data analysis

Data collection and analysis occurred simultaneously, with previous interviews and preliminary insights used to inform future data collection. All interviews were recorded and the audio automatically transcribed verbatim via Zoom. TM reviewed and manually edited all interview transcripts to ensure accuracy. Field notes from both co-interviewers were written and used to inform the analysis. Thematic analysis, a flexible analytical tool that is compatible with descriptive qualitative research, was used to identify recurring themes in the transcripts.²⁴ All analysis of the data was conducted via NVivo V.14.

Interview transcripts were first reviewed by TM, KS and AS to establish familiarity with their content, followed by an initial round of coding conducted by TM, KS and AS. In line with Braun and Clark’s 6-step process, initial codes were established, reviewed, and refined through an iterative process with the entire study team.²⁴ Codes were grouped into themes defined by the study team over multiple meetings (see table 1). Data collection was considered complete once the research team reached a level of thematic sufficiency as part of the ongoing data analysis.²⁵ Thematic sufficiency was achieved when patterns within the data were judged to be consistent and well-elaborated such that they provided enough information to support a coherent and meaningful description of key aspects of the PxP leadership experience.

Table 1. A worked example of analytic procedures.

Excerpt	And that whatever you say holds weight in that group and is going to lead to change or perhaps changes in how things are done based on what you say. (SC member 1)
Initial code	Power
Refined code round 1	Decision-making power
Refined code round 2	Handling of power
Theme	Steering committee environmental characteristics

Coding was brought for discussion during team meetings. Individual coder interpretations and rationale were discussed with team members, with a particular focus on instances where coder interpretations varied. Collectively, team members offered insight and discussed interpretations, making a coding decision and a plan for exploring that decision in future coding cycles. In subsequent team meetings, we discussed examples of the new coding—in what ways did the new code/definition help organise new data, and in what ways was it constraining or insufficient to explain new data. This cycle continued over a series of team meetings until a final code was settled on as the best way to organise dominant patterns in the data.

To preserve participant confidentiality given the identifiable nature of some of the data and the small sample size, member checking was not sought. Our research team included individuals who continued to support PxP in 2025, including one SC member. Their role during analytical discussions was to bring that experiential lens to the coding and interpretive process, with reflective attention to their own positionality. As team members, they were bound by our research ethics procedures regarding confidentiality in a manner that participants were not. As such, our research team composition allowed for a degree of member checking without risking participants recognising (or assuming) the source of quoted material representing each theme.

Positionality

In qualitative research, the research team must attend to how its orientations shape the study and influence the credibility of the findings. Our research team included both individuals intimately involved in the patient engagement space and the annual PxP conference. AS is a patient partner and was a member of the 2025 PxP SC. KS is a patient partner and was a panel member for a session of the PxP conference as well as moderator for a panel discussion during a PxP webinar. DPR identifies as a patient partner, PE specialist and facilitator, facilitating PxP SC meetings since 2023, and was hired by CIHR-IMHA to support its overall efforts in PE and provided support to speakers, moderators and SC members in their roles at PxP. The lived experiences of AS, KS and DPR as patient partners brought important insights and nuance to the interpretation of the data. HM attended SC meetings to engage with the process and provide logistical support. She managed the PxP website, social media and event platform, and also supported speakers during the event. She was intimately involved in developing PxP and SC meetings. TM attended several PxP conferences and webinar series. TM has also worked closely with patient partners on various Institute projects and is a supporter of patient engagement in research. KK is an experienced clinician-scientist who has been part of many events as a funder, organiser and participant. He is an advocate of patient engagement in research. He attended some of the PxP planning meetings and met regularly with DPR and HM. The team also included LL, a qualitative methodologist uninvolved with PxP, who provided guidance for the study design and participated in the iterative cycles of data analysis. The prior patient engagement experiences, research expertise, and collaborative nature of this study team allowed for in-depth discussions as analysis proceeded and enriched the interpretation of the results.

Patient and public involvement

Patients and the public were co-investigators. Patient research partners co-designed all aspects of the study from the beginning, including developing the research questions, co-leading the interviews with SC members and data analysis, and co-authoring this manuscript. Patient rsearch partners were invited to participate in all team meetings and were compensated for their time in accordance with CIHR-IMHA compensation guidelines.²³

Results

Participants drew on their past experiences in research as patient partners as well as their experiences since PxP when sharing their experiences of patient leadership in the conference. Descriptive thematic analysis identified four major themes within the data: (1) institutional support, (2) SC environmental characteristics, (3) personal growth and (4) new possibilities (see figure 1). Each theme is described below and illustrated with representative quotes from the transcripts.

Figure 1. Patient-led themes and subthemes.

Theme 1: institutional support

Offering funding support

SC members identified institutional support as an essential resource to support the SC members and to make the PxP conference happen. This included offering financial compensation to SC members for their time and expertise, which SC members felt reflected the importance of patient engagement to the Institute, that participant time was valued and their input “actually meant something” (SC member 4).

A lot of people say that patient partnerships or patient-led work or whatever are really important to them, but they don't ever put their money where their mouth is. (SC member 1)

Lending credibility

SC members also highlighted that the institutional support of PxP provided a level of credibility when interacting within the research community. Often there are barriers to patient partner events being taken seriously by the research community when “someone does not have institutional backing” (SC member 3). Buy-in from a reputable institution lent legitimacy to the event and the information shared by speakers, many of whom were patient partners.

Sometimes, particularly in terms of researchers joining the event, I think if it was organised by a patient charity or some patient group, I don't think it would have that same gravitas that researchers think. ‘Oh, this is something I want to join or this is something for me’… But I think if it’s got a big institution behind it. I think that helps with broadening the appeal. (SC member 13)

Overseeing administrative and logistical support

SC members described the administrative and logistical support as “exemplary” (SC member 9), differing positively from their other patient engagement experiences. The additional administrative support also offered patient partners an overall sense of smoothness with the experience. SC members and conference speakers were able to schedule one-on-one or additional meetings with the patient partner facilitator. These meetings accommodated SC members in different time zones and provided opportunities to ask questions and share things they might not have wanted to in group discussions. Overall, SC members felt a sense of trust in the administrative support and this reduced the burden on patient partners allowing them to show up to meetings without feeling stressed or inconvenienced.

It’s basically… the dream support we had. There was process support, there was content support, there was tech support. I mean, everything was sorted and everything was handled. (SC member 2)

Theme 2: steering committee environmental characteristics

Adopting patient-led

SC members identified several characteristics of the PxP SC environment that were salient to the committee and event success. Of these, being patient-led was highlighted as a core characteristic by the SC. In their own words, SC members defined what they felt were the “key ingredients” to ensuring events or projects were truly patient-led. These included patient partners: driving the initiative and defining the direction; originating the ideas for research or projects; being embraced as equals and having a shared partnership on the team (ie, having a “seat at the table” (SC member 9)); and being involved in the implementation of a project from start to finish. SC members highlighted that patient-led events should be just that, primarily led by patients.

So, when I think of patient-led or something that is patient co-led. It’s not just about participating in research. It’s not just about partnering from being an advisory committee or being on a working group. It’s not just advocating for policy changes or legislative changes or a new drug or voice in something. It’s about being an equal leader and having strategy, having blue sky thinking, defining direction, moving forward with implementation, making choices, making decisions in a democratic way. (SC member 11)

Some SC members had never seen or been a part of leading an entirely patient-led event outside of PxP. SC members stated they felt they were able to have a say in various aspects of the conference and that the experience was so positive that it left them wondering when the “other shoe would drop” (SC member 2). Overall, the majority of SC members felt that the SC and decisions that emerged from the group were patient-led.

The reason it’s different is that it is different. It’s genuinely patient-led. (SC member 2)

Handling of power

Various themes on how “power” was handled were woven into the reflections of SC members about their SC experiences. Conversations around holding and sharing power mainly fell into one of the following categories: decision-making power (ie, who holds the power to make decisions), power conventions (ie, power systems that develop within groups when no clear hierarchy exists), and managing power (ie, institutions giving or sharing power with patient partners). SC members expressed that their decision-making capacity was reinforced by leadership “sharing” (SC member 6) or “giving up” (SC member 1) power. Those in positions of power within the Institute were noted as providing financial and moral support but having a hands-off approach that did not control the narrative of the SC nor its decisions.

They were so supportive. But they didn't control it. They let us drive the bus, so to speak. (SC member 5)

Several subthemes around power conventions emerged, reflecting how power systems can develop within groups when there is no clear leader or final decision maker. Institute staff aimed to equalise power and establish horizontal leadership among SC members and Institute leadership. However, several members indicated that their ability to express their opinions or have their input considered by other SC members was challenging at times based on the dynamics of the group. Indeed, some SC members felt their voice was lost or diluted during the group discussion, while others felt intimidated in group discussions and expressed challenges in initially forging connections over virtual meetings.

But here, because everyone was a patient, I sometimes felt like people were fighting to be heard above the next person. We're all on the same level field so then people want to kind of stand out a bit sometimes. (SC member 13)

Creating a safe and accessible space

In contrast to this, the absence of a hierarchy simultaneously cultivated a space that was collaborative, open and respectful. SC members expressed that the SC was a positive and open environment where opinions were heard and no topic was off limits. SC members were not “afraid” of being constrained or “shot down” (SC member 3) by institutional leadership. SC members emphasised the impact leadership from the Institute and the Patient Partner Facilitator had in fostering trust and respect within the SC. This allowed SC members to feel a sense of openness and that their contributions were acknowledged without being micromanaged.

It makes a huge difference when the leader sets the tone … of “this is your project”. (SC member 1)

Flexibility and consideration for accommodating SC needs and being able to pitch in according to each member’s strength were highlighted as fundamental to meeting accessibility needs. Rescheduling or offering additional meetings, materials in advance, and accessible features of the conference, allowed SC members to feel like they were not missing out and were included and valued in the experience.

The expectations were very clearly communicated that sort of no one had to do more than they felt able to. (SC member 2)

Ensuring diversity of opinion

The diversity of disease expertise and global representation of SC members was also acknowledged as a vital component to ensuring representation and accessibility. SC members identified accessibility and global representation as essential to the conference having a bigger impact by reaching beyond the “usual suspects” (SC member 2) and having discussions around a greater variety of topics with more international reach. SC members reflected on prior patient engagement experiences where they felt their voices and opinions were not heard, often describing feelings of being tokenised when engaging with the medical community or researchers.

I always take that away from PxP. I got to see exactly what a diverse cohort looks like. So, when folks talk about health equity. I can go a little deeper because you're talking about it within the confines of (location). But I actually had the opportunity to participate on real diversity, equity, and inclusion and it wasn't about race. (SC member 9)

However, some SC members emphasised the need for the inclusion of perspectives outside of the Global North and for the consideration of cultural differences as well as the inclusion of those from different educational backgrounds.

Theme 3: personal growth

Cultivating skill development

SC members highlighted that the various methods of engagement in the SC helped foster personal growth and the development of practical and hands-on skills. Often SC members reflected on the positive experience they had with the PxP SC and described how their involvement gave them “a push to do more” (SC member 10) and fostered a sense of confidence in their expertise and ability to “lead other initiatives” (SC member 7). SC members reflected on how the hands-on skills they developed from the SC led to feeling more confident in using their voice to share their opinion, get involved in conferences, and advocate for their own condition. They also highlighted how this experience provided an opportunity for reflection on what they could do in their own country or community.

I gained confidence and made connections and even presenting, I gained confidence in my presentation skills and my facilitator skills. (SC member 5)

Strengthening relationships

The majority of SC members also expressed that involvement with the SC fostered peer-to-peer support, relationship building and “a kinship” (SC member 9) with other members of the committee and patient partner community. Many felt that they were able to connect and build a sense of community and “partnerships that continued” (SC member 11) past the conclusion of the PxP conference. Several SC members shared that their involvement with the conference also made them feel more connected to the health research community and, in several instances, resulted in researchers who were attending the conference reaching out to collaborate on future projects.

I would say it’s made me feel more present within the health research community… it’s made me feel more included in health research. It feels like more opportunities have opened up for me as a patient partner since then. (SC member 3)

Theme 4: new possibilities

Modeling potential

Several SC members noted that the Institute is an innovator in the patient engagement space and is leading by example. This impact was perceived by SC members as having a “ripple effect” (SC members 2 and 4) and showing other institutions what is possible. SC members noted there are very few patient-led events. Bringing individuals together from around the world encourages patient partners and others to go back to their organisations or countries and advocate for patient engagement. SC members also spoke about how patient-led events can improve future research by increasing awareness and educating other researchers about patient engagement best practices.

PxP is really showing the industry that… you for so many years, you've forgotten us. And we had to create a forum. To let you know that we can do this … Our purpose is to educate you and speak for those that aren't here on what some of the disparities and some of the challenges are when it comes to helping us to live better, healthy lives. (SC member 9)

Looking to the future

SC members encouraged future SC members to have confidence and ensure their ideas are heard. They also encouraged the Institute to keep forging ahead with patient-led events and to keep expanding. SC members also stressed that “(patient engagement) happens by choice rather than chance” (SC member 6), highlighting the need for the same level of promotion of patient engagement and patient-led events across all of CIHR’s Institutes. Some SC members voiced concerns that the event wasn’t reaching enough individuals and expressed a need for greater promotion of the PxP conference to engage a larger audience.

I hope they continue something like this… [the PxP conference] can really benefit a lot of people. To bringing the patient autonomy voice forward… allowing them to have the autonomy to choose… how and what information is presented from the heart and the mind. (SC member 7)

Discussion

The goal of our study was to better understand how patient partners in leadership roles experienced a patient-led conference and to start characterising best practices for institutions and others to support patient partners in leadership roles. Building on previous work by Richards et al, which provides step-by-step guidance on co-creating and supporting a patient-led conference, this work explored the experiences of those directly involved as SC members in the patient-led conference.¹⁸ Interviews with SC members highlighted four major themes that were vital to the success of the patient-led PxP conference and patient partner leadership experience: (i) institutional support highlighted how funding and logistical support from institutions alleviated administrative and financial burdens placed on patient partners in leadership roles; (ii) steering committee environmental characteristics such as power dynamics, facilitating accessibility and engaging patient partners with a diversity of experiences were integral to patient-led events; (iii) personal growth was fostered among patient partners in leadership roles via skill and relationship development; and (iv) new possibilities were demonstrated to patient partners by the patient-led event and modelled opportunities for future patient leadership.

Here we aim to expand on the first two themes and to discuss important insights relating to institutional support, power dynamics, accessibility and intersectionality. These are not intended as generalisations; rather, they are recommendations reflective of our qualitative findings that readers will need to assess for transferability with reference to their own contexts.

Providing institutional support

Events such as PxP have costs and require personnel support—this can be provided by an organisation or institution. Without these supports from the Institute, it would have been very challenging to run a patient-led event of the same calibre.¹⁸ Until patient partners are given the necessary support and funding to run their own events, successful patient leadership will rely on a level of support from institutions.²⁶ In addition, when hosting or leading an event, patient partners face unique barriers related to their health and life circumstances, as compared with typical conference organisers.²⁷ Our results align with previously identified barriers and suggest that these can be navigated through additional and flexible logistical supports and meeting times, allowing patient partners the opportunity to focus their time and energy on important aspects of the event, such as the content and speakers, rather than worrying about the complexities of technology and scheduling etc.²⁸,³⁰

Patient leadership

While a patient-led event may require financial support, the leadership remains with patient partners. Financial support without strings is essential; this can be realised through a defined budget (and potentially in-kind support such as staff) and a clear mandate that patient partners are in charge. Our results suggest that patient leadership need not be limited only to patient-led conferences; rather, it should be and has been encouraged in areas including research design, health policy, advocacy for access to care, and clinical care design.^{28 31 32}

The level of support provided can exist on a continuum. There are several examples of patient-led initiatives that range in their level of organisational involvement and support, including Pain Canada’s “Putting the Pieces Together” conference,³³ which served as a catalyst and template for the PxP conference, and the “Canadian Arthritis Summer School”.³⁴ Both of these events supported patient partners to lead various aspects of decision-making and the event proceedings.

There are also examples of patient leaders spearheading their own initiatives without institutional support, such as the Australian Consumer Partnerships in Research Awards.³⁵ Additionally, in 2025, the Canadian-based PxP expanded to include PxP Africa, India, and Australia. These events had operational and financial support from CIHR-IMHA so that SC members in those regions can create, lead and host an event that meets the needs of their region. Each of these events was supported without any expectations beyond “create an event for your region about patient engagement in research.” Ultimately, our results suggest that providing monetary, logistical and personnel support is a way for organisations to demonstrate that they value patient leadership but also, that they trust patient partners and that they can provide resources, without any strings attached, and know that patient partners hold the skills and abilities to take charge and lead events.²⁶

Power and power dynamics

Power among committee members was a central component discussed by SC members in this study, and a complex one. Efforts to eliminate hierarchies had the unexpected impact of complicating the decision-making process. Richards et al, previously described power and power dynamics in patient engagement, including the changing nature of power, power among and between the patient partners themselves, tokenism and patient engagement being viewed as a commodity.³⁶ These assertions about power resonate with SC member reflections on prior patient engagement experiences. However, efforts to create an equal and collaborative space between the SC and leadership raised the issue of what happens when you alter traditional power structures? In these situations, “traditional” decision-making rules no longer applied and exposed some unintended consequences.³⁶,³⁹ Often in healthcare and sometimes research, patient partners have the least amount of power, and disrupting this hierarchy revealed further power dynamics that need to be considered, particularly when examining the intersectionality that each SC member brings.^{26 36} This shift in power may have also pushed SC members to rely on what they know and what is comfortable. As highlighted by Carolyn Thompson, a “sudden shift to a new order can shatter things people previously counted on as solid”.⁴⁰ As a result, power structures within the SC may have formed out of familiarity and a need for some form of stability. It may take time, clear communication and regular check-ins with SC members to ensure that each member feels equally comfortable asserting themselves in a decision-making process with unconventional power relations.

SC member reflections also highlighted the varying degrees to which individuals recognised their own power and positionality within the committee.⁴¹ Some SC members felt that their opinions were heard and integrated into actions, while others did not. This may have reflected differing positionalities within the group, not realising that some members did not share the same experience.⁴¹ Many SC members are from parts of the world where patient engagement is better established and often had advanced education.⁴² Thus, even with the most intentional efforts to “level the playing field” the intersectionality of participant characteristics (eg, education, wealth, language etc.) and differing degrees of privilege, may ultimately create an unintentional power dynamic within the SC. These reflections on power systems and what happens when they do not follow the status quo highlight the complicated nature of trying to democratise power and the subsequent roles individuals may try to fill when no named leader exists.

Accessibility

Each year of the PxP SC has grown more global and has taken intentional steps to broaden diversity.⁴³ As PxP continues to expand, future approaches to facilitating meetings may need adaptation in favour of accommodating SC members from diverse cultures and various parts of the world.^{44 45} In line with this, one characteristic of the environment that was particularly important was accessibility. Meeting virtually and adopting a flexible meeting schedule allowed SC members from around the world to contribute in ways that worked for them, removing geographical and time constraints. However, while virtual settings have been noted to increase accessibility,^{26 46} they also bring their own set of challenges. Individual learning curves navigating online platforms as well as precarious access to the internet can create barriers for international patient partners.^{47 48} These challenges should be discussed with patient partners, and accommodations, such as potential compensation for internet access (eg, via mobile networks), should be considered.

Take home messages

Below (see table 2) we consider the above reflections and offer some pragmatic suggestions on key areas to be open about and discuss with patient partners.

Table 2. Key takeaways and recommendations.

Key takeaways
Topic	Themes	Lesson Learnt	Future considerations
Let Patients Lead	Institutional support	Financial, leadership and institutional support are needed to run the event and support patient leaders.	Ensure adequate support is provided in all aspects of the event, including patient partner compensation, logistical support, staffing, and technology.
Democratise Tasks and Decisions	Steering committee environmental characteristics	Power dynamics and power hierarchies can develop even when “traditional” rules and procedures are dismantled. All patient partners should have an equal say in the decision-making process.	Spend time on your decision-making process. Discuss with patient-leaders how traditional rules and procedures have been dismantled and what has been put in their place.
Make the Event Accessible for Patient Partners	Institutional support; steering committee environmental characteristics	Accessibility encompasses a number of factors such as a patient partners’ language, education level, time zone, internet access and ability to be present at meetings and engage synchronously vs asynchronously.	Discuss and accommodate patient leaders’ accessibility needs and preferences for meeting frequency, time and setting (ie, group vs 1:1).
Acknowledge Intersectionality	Steering committee environmental characteristics; personal growth; new possibilities	Consider intersectionality when engaging patient leaders from different places and backgrounds.	Ask patient leaders about their communication style and preferences. Ask patient leaders how you can support them to lead engagement with their own community.

Limitations and future directions

Our sample size is small; however, it is representative of the population we aimed to study and information rich. In line with the concept of information power, our sample size makes up most of the population of interest (n=13/17), the quality of dialogue was strong and our sample specificity was dense.⁴⁹ Additionally, our analysis was iterative and informed by our team which included Patient Research Partners. Our findings are limited to the learnings from 2 years of the same annual patient-led conference. Furthermore, SC members were mostly from places where patient engagement is already fairly well-established. Because 2 years have passed since some SC members initiated their role, their reflections may be deeply impacted by their own patient partner experiences since that time, current life circumstances, and health. However, given the novelty of this research area and the limited number of international patient-led events, these findings offer a valuable opportunity to add to the current literature on patient leadership and patient-led conferences. Future research should expand beyond conferences and examine patient leadership in different contexts, including healthcare, policy, and advocacy settings.

Conclusion

In our descriptive thematic analysis, we found several components that supported patient leadership in a patient-led conference. Offering appropriate support, including financial compensation, creating a safe, accessible and culturally diverse space, as well as providing opportunities for skill development and relationship building were all important aspects of patient leadership. Patient-led events also offer an opportunity for institutions and the wider researcher community to place their trust in patient partners, allowing them the autonomy to make decisions that are important to them and their community. We offer several lessons learnt and recommendations with the hope that our findings encourage institutions and researchers to recognise the value patient leadership roles can add and to propel patient-led initiatives to continue expanding to other events, policy and research. Overall, our findings underscore that patient partners can lead a successful virtual conference.

The funder, CIHR, had no involvement in the study design, collection, analysis and interpretation of the data, writing of the report, and decision to submit the paper for publication, despite author affiliations with the funder.

Data availability statement

Data are available upon reasonable request.