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.
Day 2, Session 1
Leveraging the researcher perspective: gain insight into the mind-sets of researchers who are embracing patient partnerships.
- During the talk there was discussion around the importance of researchers who create a safe and supportive environment for patient partnership. People named that it can be an exceptionally laborious process to try and convince people to value patient engagement which makes it even more important to have enthusiastic PIs and researchers. Two participants discussed how “It took a lot of disappointment to realize that…some people will never be convinced”.
“It’s so important that we look for researchers to partner with, who truly value what we can bring to the process, and "just say no" to those who are not truly invested in inclusionary approaches.”
- There was also discussion around the need for diverse patient engagement and one participant emphasized that “no one partner can cover a condition”. This speaks to the need for greater and more diverse patient engagement in the research process. Participants named the need for patient involvement in the funding process and also, the ways in which when patients are involved in funding decisions, it is though tokenistic means. For example:
“Raised several issues with their patient involvement strategy that needed attention. The result was their funding was delayed for several months and a LOT of pressure was put on me by the funder to just approve the strategy, as they were making it very known to me that I was responsible for delaying the funding. Obviously patients were only on the funding renewing panel as tokenism and the whole funding renewal was going to happen regardless.”
- Chat participants explored the complexity of not wanting to work in spaces where if their opinion and lived experience does not feel valued. Equally, the concerns around not wanting to put unexperienced patient partners in unsafe environments. In the process of looking for solutions to this, one person suggests that:
“Maybe if patient partner feedback had more influence on funding before, after and especially DURING the research project, researchers would be a bit more open to doing it right.”
- All throughout the discussion, there was collective agreement that patient partnership is essential and necessary in research projects.
"It is not an option to do research without patients involved!!" Dr. Linda Li <conference speaker>- this is so true and profound! Thanks”
“Perhaps the next evolution will be patients leading research and this will challenge existing academic and health institution’s infrastructures that often pose barriers”
“I think researchers need to include patient partners at the ground floor as they build their research projects: relevancy for both sides. Better outcomes.”
- The discussion also focused on patients holding the positions of mentors and researchers.
- The chat also echoed the emphasis on relationship building in research…
“Relationship development is vital - too often it can be transactional only - research is a human endeavour - we need to get to know each other as people.”
- People discussed the need to recognize patient partners as dynamic partners instead of perceiving them in a one-dimensional way, somewhat defined by a specific subset of input they can provide from their lived experience.
“Think about the many hats patient partners/lived experience can bring (yes their patient hats) but also other fields/careers/life experience that can help researchers to INNOVATE in a new way-- we will ask different questions.... :)”
- There were discussions around the need to improve diversity, that yes, it is “great to have patients ‘at the table’…when we look at which patients are at the table, diversity needs to be improved”. Patients emphasized that researchers are responsible for approaching patient partners and particularly those in equity-deserving communities i.e. that patient partners are not “hard to reach” but rather academia and research can be hard to access and research teams should be intentional about how they approach patient partners to promote accessibility. Conversations centered around patient partnership beyond tokenism.
“If there is interest shown in underserved communities (like the [B]lack community), trust can be built. We want to be seen, heard and valued and understood!”
“Research is about humans working together so you need trust, transparency, respect, curiosity and yes humility”
- People also named the importance of funders speaking to patient partners independent of researchers so that patient partners can speak freely about the process.
Resources shared in the chat:
- Info on the session's speakers: https://pxphub.org/event/past-events/speakers-2023/
- Link to experiences of patient involvement in an international translational research project, including working with many basic researchers:
- Link to Patient-Engaged Projects References shared by Dr. Linda Li <Session speaker>
- Link to reference on plain language and health services research
- An Interview with Dr. Linda Li - A reference provided during the discussion around CAN
- Patient Voices Network (PVN) - Mentioned as a resource in British Columbia for researchers to contact patients with lived experience.
- WeCanTrain - Developing clinical trial training programs for various stakeholders, including patients.
- Patient Experience Research Centre (PERC) Resource Hub - A resource mentioned for public involvement and engagement in research.
- NIH Grant to Advance Clinical Translational Science