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

PxP 2024 Day 3 Session 1: The participant Chat

Publishing as (and with) patient partners with Sophia Walker, Clare Ardern, Harry Iles-mann, Nidhi Swarup and Janelle Bowden.

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. Attendees shared that open access (which means that anyone can access the information for free) allows people with lived experience to access important information within journals. In addition to open access, accessibility can be improved by providing, for example, “companion guides to complex Clinical Practice Guidelines written with/by people impacted by whatever is the subject of the guidelines.” People in the session also noted that there is a need for more co-authorship opportunities for patient partners.

2. Patient partners are regularly finding conferences inaccessible. Paying fees for poster presentations alongside the cost of travel and accommodations makes attending costly. One person said that “consumers [patient partners] shouldn’t have out-of-pocket expenses to do…work as [a] volunteer.” There were concerns over conferences going to fully in-person again which also limits accessibility.

3. Participants named that the resources available in the West are not available in different places such as Africa. As such, there needs to be work done to create more resources to provide information and opportunities, specifically in places that have been historically marginalized and destabilized.

4. Individuals shared ways to make meetings/research more accessible for different accessibility needs. One way was named was “people recording their conversation, then [using] transcription services and a buddy system to support people with lived experience writing their experiences.” Another tip was to use a stream-of-thought method to work through brain fog. Alongside those, artificial intelligence (AI) came up a few times to help transcribe or take notes. Some other tips included:

  • Active collaboration using visual mapping in short sessions (less than 30 minutes) is helpful.
  • Writing short sections with a co-writing partner, again less than 30 minutes per session.
  • Rotating sections with other collaborators, so that you review some and write some.
  • Allocating the work in small segments and careful timing in any way that works for those impaired by brain fog and fatigue is helpful
  • Using a voice recorder on the phone and transcribing utilizing an app
  • Using apps such as Miro for visual mapping
  • Meetings where the paper is verbally discussed because that can be easier than editing a document or sending an email.
  • If there’s something in particular in the paper that, as a researcher, you know that patient partner expertise will be especially important, then focus on that through a document, a highlight, a note

Resources shared in the chat: