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 3, Session 1
Discussions:
1. People expressed appreciation for the speaker, Patrick Gee, emphasizing that patients are more than just patients and that no is a complete sentence.
“at 68 years old, I have for the first time understood what "NO is a complete sentence" means - thank you [Patrick], that is brilliant!”
2. Attendees discussed the idea of ‘the seat at the table’ and ways in which patient partners can create new tables where they do not have to fit the mold of what is considered a ‘good patient’.
“I'm all for building new tables! Hopefully PxP can be a launch pad for some new table building with all the folks who've become a part of this community”
3. The conversation touched upon the need for more patient partners in the space to avoid overwhelm. Participants also named the importance of finding ways to set boundaries. They highlighted the need for resources to support the training of patient partners.
“we have to find ways to prepare new patient partners to not be overwhelmed and to set their boundaries, it is a bit of a vicious circle. No training - overwhelm and limited influence, more training- risk of moulding.”
4. Individuals discussed imposter syndrome and the ways in which it impacts a variety of different people such as patient partners and academics.
“Imposter syndrome really is a terrible feeling, and can go so deep inside ourselves”
5. There were conversations around the various titles and terms involved in being a patient- different attendees shared varying preferences on terms and titles they prefer. They also detailed their varying experiences with the word patient- some considered ‘patient’ to have a negative impact on their experience in healthcare whereas others found it important to identify as a patient in order to receive care. Ultimately, this led to discussions around the difficulties of trying to standardize language.
“I would love to have a roundtable discussion at some point about these terms, like lived experience, and patient partner, etc. I always struggle when people ask me for a title or to explain what I do!”
“Ok - someone has to leverage Barbie (and not just b/c Margot is an Aussie). We all have to bring our ken-ergy b/c [because] patient partnerships in research are not [yet] ken-ough
“In my work doing disability-led design research terminology comes up a lot as well - the terminology preferred by different disability communities and subcommunities is variable and fraught and complicated by institutional recommendations that don't always match what the communities themselves prefer.”
“in regards to being "labelled" a patient, if I’m empowered to take the label disabled then I sure as hell will talk the label patient too. Another linguistic wording people generally jump on. sometimes people don't like gatecrashers for individuals who present later with a condition and want to change it to late presenters.... shouldn't those people pick, choose and empower what wording they want to use???”
6. Attendees also discussed how to identify themselves within research
“When you publish, you can list affiliations - plural. If one of these affiliations includes 'patient author' or 'patient partner' or 'caregiver author'...then these publications can be identified via PubMed search. When people say patients can't publish showing them the database of patient-authored pubs is powerful evidence”
7. Towards the end of the session, participants discussed the ways in which self-care was intertwined with advocacy. Noting that “self care is not selfish”.
“The thing that I always have to remind myself is that I have to do the self-care thing so I can keep doing the advocacy thing. But it's not easy.”
Resources shared in the chat:
- Info on the session's speakers: https://bit.ly/PxP-Speakers
- Holacracy: https://www.holacracy.org/r/tactical-meetings/
- Patient Revolution - https://www.patientrevolution.org/
- Love Med Ed: https://lovemeded.org/love/
- U Mass Med: Complicating Relationships: https://www.umassmed.edu/contentassets/463435ed8e384c3e91bfa5cb4a4598df/complicating-relationships.pdf
- “Critical history of how the sick person is turned into ‘the patient’”: https://academic.oup.com/ije/article/38/3/639/687634
- “Hidden in Plain Sight: Identifying Patient Authored Publications”: https://pubmed.ncbi.nlm.nih.gov/35410628/
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