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PxP 2024 Day 3 Session 3: The participant Chat

Learning about different types of recognition for patient partners with Sarah Lukeman, Kimberly Strain, Jack Nunn and Kwanele Assante.

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. Individuals discussed the difference between recognition and compensation, naming that recognition is “something that [everyone] can do for one another on a project team”. People shared different ways that compensation can take place- such as being offered free courses at the university that the research took place at. Other people shared that there are many bureaucratic barriers to being paid for their work as they’re often not considered an employee. This experience can make people feel demoralized. Another barrier specific to Canada is the Canadian government’s claw backs on the income that disabled Canadians make.

“Totally agree - recognition and compensation are completely different.”

“I found very frustrating the lack of standardisation amongst different States or even amongst different jurisdictions. I wonder if we could promote more standardization.”

“[Tracking hours is] an eye opening exercise when I realised I was donating over 100 hours a year for one organisation, with no compensation”

2. Someone shared that language such as partnership rather than engagement may create “firmer ground for tackling issues with respect [and] undermining.” Another person noted that perhaps “socializing the word ‘workforce’” when speaking of patient partners in research may “further change the perspective of the other stakeholders in the ecosystem. When we think of patient partners as a workforce, then a whole bunch of concepts that apply to the workforce come into play.”

3. Participants in the session spoke about different ways in which patient partnership is inaccessible to folks. Naming that it feels unfair for researchers to want diversity but also not create systems of accommodation for different people to be involved. People such as working students, impoverished people, or people with children have additional barriers to involvement.

“All organizations want ‘greater diversity’ usually referring to age, cultural, [I]ndigenous however even when a sitting fee is paid its not enough for people working the gig economy or self-employed to take time off work (or risk losing their job), and of course almost every meeting is in working hours.”

4. Individuals discussed the impacts of their lived experience and expertise being dismissed. They said that when researchers fail to listen or take feedback when patient partners share that something needs to be addressed, it leads to traumatic experiences for patients and/or patient partners.

“it apparently carries a previously undocumented risk of a very serious and potentially fatal infectious disease. The research was unpublished, and I advised the patient org to please address this with the community reviewers in advance of our meeting. They did not, and it was dropped [and] front of the community reviewers with zero preparation, and ended up being extremely traumatic for many of the community reviewers on the call .”

“no honorarium in the world can undo that kind of trauma”

Resources shared in the chat: