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PxP 2024 Day 1 Session 1: The participant Chat

Embracing the 'lived experience' part of your identity with Rae Martens, David Gilbert, Angie Clerc-Hawke, Libby Humphris, and Oluwafemi Ajayi.

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. When discussions centred on psychological safety, people echoed the importance of avoiding re-traumatization and harm. Naming that “often 'invisible' illnesses and symptoms are dismissed as being caused by mental illness” which makes it difficult to discuss the real impacts of different conditions on a person’s mental health.

2. People also noted the importance of “embracing [their] lived experiences”, naming that doing so is “alchemizing challenges into something positive”. They discussed the ways in which lived experience is acquired through experience and the ways in which it is a form of expertise. People had an appreciation for the term “experiential leader”, naming that “[b]uilding an experiential workforce where we are connected to each other, learning from each other, and helping each other would be a great way forward.”.

 “I think expertise can encompass knowing how to contribute to work using our lived experience, and how to partner with healthcare and research teams”

“For me, lived expertise or experiential expertise, comprises all the competencies, skills and attitude to provide the perspective of people with a particular condition in a specific context”

3. Discussions then moved towards the role of clinicians in research, noting that often clinicians “have little incentives to involve patient partners”. Further points were made in the chat around the importance of research impacting practice and vice versa. This was coupled with naming the importance and value of patients in research. Participants highlighted that patients engaged in research also need to be appropriately compensated for their work in research.

4. Attendees then considered ways in which power dynamics come into play within research. To ensure meaningful engagement, power dynamics need to be neutralized andthat one of the ways to create meaningful engagement is to have intrinsic motivation, as a lack of such leads to tokenistic approaches to patient engagement. Participants empathized that patient partners in “[p]olicy and governance [are] critical to system change”

“The engagement--when you're involving researchers, medical staff, admin and patients/caregivers really needs to be thoughtfully designed.”

“Patients engaged in policy are often hand-picked for their ‘agreeableness.’”

“I don’t actually think [power dynamics] can be neutralized. Working with researchers, and especially clinicians, they hold the keys to power (at least for now). I think we need to be *super* mindful to recognize power disparities on teams, put voice to them, and intentionally and deliberately mitigate how those disparities can contribute to silencing voices and excluding those who have always been excluded.”

Resources shared in the chat: