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PxP 2024 Day 2 Session 2: The participant Chat

Navigating difficult experiences when patient engagement doesn't go as hoped with Thomas Smith, Sally Crowe, Michael Falcon and Nichole Jefferson.

Words by PxP attendees, summary by Rabaab Khehra

Across the three days of PxP, we had some meaningful conversations and resource sharing taking place in the participant chat. In this summary, we aim to capture those discussions in a format that is anonymous and easy to digest. We recognise that this summary does not capture the full richness and level of detail of the conference chat. However, we hope this is a starting point for continuing these important conversations over the coming months.

Discussions:

1. Discussions highlighted the complexities of power in patient-researcher relationships, emphasizing the importance of understanding who holds decision-making authority. The balance of power can significantly impact the success of collaboration.

“Who decides what is constructive and counterproductive conflict? It’s important to locate where the power resides.”

“I hold the power as a patient partner!”

2. Panelists noted that awareness of one’s own positionality and role within research teams is crucial for effective collaboration. Without self-awareness, misunderstandings and conflicts can arise in partnerships.

“Not every person I’ve partnered with has a keen understanding of their positionality.”

3. Lack of clarity regarding roles in patient-researcher engagements often leads to conflict. Participants emphasized the need to address these issues head-on and advocated for "good trouble" to drive positive cultural change in research practices.

“A great deal of conflict is caused by lack of clarity around engagement.”

“We all have to get into 'good trouble, necessary trouble' in conflict resolution to instigate cultural and systematic changes.”

4. There was debate on whether empathy and compassion can be taught, but the consensus was that respect for patient partner expertise must be prioritized. These so-called “soft skills” are often undervalued in research, but they are essential for meaningful engagement.

“Can you teach ‘compassion’ or ‘empathy’? But you can teach respect for expertise from patient partners.”

“I love your point about ‘soft skills’! I hate that empathy, communication, and collaboration are considered less than technical skills and knowledge.”

5. The emotional toll of engaging in research as a patient partner was acknowledged, particularly the emotional labor involved in sharing personal experiences and dealing with medical trauma. More awareness is needed in addressing these challenges within research teams.

“Medical trauma is a real issue.”

“We should talk about ‘emotional labour.’ There’s a lot of research out there on this heavy lift we are doing.

6. Open and ongoing communication is essential for successful partnerships. Mistakes will happen, but what matters is how those mistakes are handled—acknowledging them and adapting to ensure continued collaboration.

“Communication throughout needs to be a priority at every level of the research process.”

“What keeps us safe is when you make a mistake, own it, and make changes accordingly. We’re all learning.”

7. Some people expressed concerns about being treated as free labor in their roles as patient partners, with minimal support or respect for their contributions. This can lead to feeling devalued and exploited.

“Volunteer is seen as free labor. Do as they want, how they want. Told—Do not like it, quit being a patient advisor.”

“Telling the intimate details of our experience without a defined purpose is no better than professional voyeurism and institutional grooming.”

8. Patient partners noted that being compensated with honoraria can lead to being treated more equally and respectfully in research settings. However, poor compensation practices can leave them feeling disregarded or undervalued.

“We’re finding that patient partners embedded in research projects actually receive more respect, are considered equal partners when they receive an honorarium.”

“I’ve been ‘offered’ honoraria where the process of claiming it—less than $20—took longer than the research, buried me in paperwork, made me feel like a burden.”

9. Cognitive or communication impairments among some patient partners can make certain types of training or involvement difficult. Recognizing diverse needs in partnerships is essential for meaningful collaboration.

“Many of us have cognitive/neuro communication issues and will not always benefit from communications training due to our abilities/disabilities.”

10. There was discussion about the importance of patient partners choosing the right projects, with concerns that some may accept roles that don't align with their expertise, resulting in less effective outcomes.

“It’s important as patient partners that we also interrogate if we are the right person for a specific project... sometimes it doesn’t result in the best outcomes.”

11. Compensation issues arose repeatedly, with concerns over how honoraria are handled—sometimes through gift cards or complex systems that discourage participation. Some people named that they do not mind gift cards.

“Researchers want to compensate in the right way, but are forced into giving gift cards... We don’t have much freedom to ask patients how they want to receive compensation.”

12. The emotional labor of sharing personal health stories repeatedly, especially without reciprocal vulnerability from researchers leads to difficult situations for patient partners.

“Sometimes members of research teams won’t talk about their own mental health. But they ask me for my story time after time.”

13. Several individuals argued for the importance of virtual engagement, which provides much-needed accessibility for disabled individuals. However, many health research events are reverting to in-person formats, which exclude some patient partners.

“Instead of keeping those lessons [about disability inclusion], too many would rather ‘move on’ than continue in an accessible way.”

“I prefer Zoom. One cut curb is not accessible.”

14. Individuals highlighted the need for intentional relationship-building and safe environments in research partnerships. Collaboration should prioritize respect, compassion, and shared goals between patient partners and researchers.

“Having the relationship come first before the research is so important.”

“Engagement without agency is futile. If organizations are serious about valuing Lived Experience, outsource the responsibility to user/patient-led projects.”

15. Many people expressed interest in building a community of practice to support ongoing patient-researcher partnerships, sharing resources and experiences to improve collaboration.

“The contributions from panelists, the chat, everyone is tremendous. I think we need to do a community of practice ASAP.

Resources shared in the chat: