Green and purple speech bubbles against a graded background of green and purple.

PxP 2024 Day 2 Session 3: The participant Chat

Bringing new voices to research and building diversity with Raissa Amany, Stephanie Paravan, Oluwafemi Ajayi and Patrícia de Luca.

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 shared different ways in which patient engagement could be more inclusive and consider different kinds of diversity in populations, including around access to care. Otherwise, research results can be exclusionary.

“Thinking about a recent initiative on gender and pain that's gotten a lot of hype and which studied gendered experiences of accessing opioids...but didn't look at anyone who's actually been UNABLE to access opioids”

2. There was a discussion around large disease charities and their intentions as well as their impact.

“One charity/non-profit does not represent us all”

“No one charity or non-profit represents us. Each claims so for grants and funding.”

3. It is necessary for the people holding positions of power to champion the implementation of best practices in their patient partnership. Co-partnership with patient partners to create these tools is encouraged.

4. There was a discussion around why patient partners are considered experts through their lived experience. One person named that “living with chronic illness and/or marginalization means deep immersion in how social systems operate, and that immersion affords expertise.” This also led to conversations around ways in which patient partners can meaningfully engaged with on a research team. For example, communicating information in lay language, including patient partners in regular lab meetings and being open to answering questions and providing clarifications.

“Too many patient partners see their patient expertise as less *because others frame it that way*. Being a ‘professional’ or an ‘expert’ as a patient partner does not mean putting on business casual and presenting yourself as researchers do. It means being your authentic self and having the comfort to be present and contribute. Ultimately, it requires respect and radical acceptance that being a team member may look different than what researchers have previously envisioned.”

“As patients learn and evolve in their experience they can add a lot in terms of their networks, their ability to advocate for language that creates a lower cognitive load for all groups involved, in highlighting experiences of their own and others around them and why this matters. We are not trying to talk about experiences so our input sits on a shelf full of wasted research.”

5. There were also discussions around difficulty lobbying, because these communities can largely consist of people who’ve built relationships with decision-makers and patient partners may not have had opportunities to build those connections.

6. Empathy was discussed. The ways in which, at times, it leads to real limits and might create issues within the research space. It is not empathy but having compassion for people who experience life differently.

Resources shared in the chat: