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 1, Session 1
Setting the Scene for the PxP Conference: an overview from a
patient partner and a researcher.
1. During the talk by Shoba Dawson, there was a significant amount of discussion in the chat about the term ‘patient researcher’ and that people may identify both as a patient and researcher. Here are some anonymized, example quotes:
”I define patient-led research as research led by patient researchers; persons with lived experience of a disease, disability, or another health challenge who are openly using those experiences in doing research, within academia or in other contexts. This can also include a family member or partner of the person living with a disease. Patient-led research is a way to bringing the lived experience of illness into the learned experience of diseases, thereby potentially improving the relevance of conducted research.”
“Patient Researchers are maybe defined as Patients who initiate research and are involved from writing a proposal - to all aspects of research conduct through with results and dissemination?”
2. We received feedback from an attendee that the participation in PxP 2023 from across the globe speaks to the impact of the conference.
3. There were a lot of comments in the chat from people who were relating to the experience being shared from Angela Ruddock. Such as this quote: “Angela, you are telling my story!”
4. Discussions also centered around the point Angela Ruddock made that it is not communities who are hard to reach, but academics and clinicians. This also tied in with thoughts around lack of diversity in patient engagement, and the need to do better. Plus, that patients involved as researchers can often gain more valuable responses from patient participants than non-patient researchers.
“So important - patients speaking with patients - we understand each other better.”
“We see the same thing when we patients interview other patients or facilitate patient engagement activities. We just got more unbridled and honest answers when the communication is patient to patient.”
5. There was a call for better transparency around how people with lived experience are selected to be research partners, particularly in relation to the discussion about equity, diversity and inclusion (EDI).
6. An attendee raised this point:
“Patient navigator - not for clinical reasons - but specifically for research - would be helpful in attracting diverse patient participants and also support them alone the process - heard more talk about this recently.”
7. An attendee shared that people of colour can experience additional barriers to getting involved in research due to certain pre-requisites (such as other experience on committees) that excluded them from participating, because as a person of colour they had not had the opportunity to gain these experiences.
8. There was also a lot of discussion about revisiting and standardizing reimbursement and compensation for patient partners. Through the chat, it was apparent that some challenges are being experienced universally worldwide, whereas others vary depending on barriers and limitations by country.
9. Lack of institutional access to libraries and resources was described as a significant barrier, along with the challenges of not having an institutional email. This tied in with conversations around the hierarchical nature of patient and public involvement in research.
10. A participant shared:
“I’d love to see the actual priorities of patients, with patient partnership, being funded.”
Resources shared in the chat:
• The PxP conference was preceded by a land acknowledgement. This resource was shared for attendees to learn more: https://guides.library.ubc.ca/distance-research-xwi7xwa/landacknowledgements
• This link was shared in relation to ‘patient researchers’: https://www.riggare.se/my-phd-thesis/
• Paper on the continuum of community engagement (pay wall): https://pubmed.ncbi.nlm.nih.gov/31866597/
• "Recognizing patient partner contributions to health research: a systematic review of reported practices" https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-023-00488-5
• Two of the Institutes at the Canadian Institutes of Health Research have recently provided guidelines for compensation. Institute of Genetics: https://cihr-irsc.gc.ca/e/53261.html
Institute of Musculoskeletal Health and Arthritis: https://cihr-irsc.gc.ca/e/27297.html#a4
• This link to the ‘As Per Usual’ podcast was shared: https://asperusual.substack.com/
• This link was shared as a route through which patients can gain free access to individual papers: https://beta.elsevier.com/about/open-science/science-and-society/healthcare-and-patients?trial=true