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

PxP 2024 Day 2 Session 1: The participant Chat

Exploring some of the ethics of patient partnership in research with Simone Uwan, Rebecca Esparza, Isabel Jordan, Jim Elliott and Vina Mohabir.

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. People discussed the different expectations of patient partner roles, which can vary by geography and has also evolved over time in some cases from being considered as volunteers to having a more formal role on the research team. "Patient Partner is a new phase for me as I am a PPI [patient and public involvement] volunteer in medical research..."

"Some of us are more than one thing!"

2. Respect and safety were central themes, with concerns raised about whether patient partners are truly valued in decision-making processes. The conversation emphasized the need for patient partners to feel safe and respected, not just token patient partners whose voices are ignored.

"Completely agree - is there respect? And is there safety within team?"

"If your input isn’t valued and your voice not heard, it’s not okay… tokenism!"

3. Participants highlighted the importance of cultural sensitivity, especially when working with Indigenous communities. Conversations focused on the need for ongoing relationships beyond project deadlines, recognizing the historical context of colonial research, and ensuring ethical approaches to data handling.

"Engagement with First Nation/Indigenous communities may have to be unique due to cultural safety."

"Ethical FN [First Nations] research needs to consider a relationship even after the research has been done and follow-up may need to be considered."

4. Structural inequality and tokenism were recurrent concerns. Individuals talked about how patient partners often feel like their dissenting voices are invited to projects, but not heard. This leads to frustrations where contributions are only valued superficially while the system remains unchanged.

"Sometimes you're welcomed into the space to be the 'disruptor,' not because anyone has any intention of being influenced by your disruption."

"They’re proving to themselves that they're 'doing good' by letting you in there."

5. Compensation was another reccurring topic, with some individuals sharing that the honoraria they receive are not equitably representative of the emotional labor required of them. Some participants also shared experiences when their compensation had been withheld because they did not agree with certain decisions or outputs

"The relatively small amount of compensation I get as a patient partner isn’t worth re-traumatizing me."

"I was unwilling to put my name to any report I hadn't read, so they 'threatened' to pull my 'compensation' = $10 coffee token!"

6. The "Gollum Effect" was introduced as a metaphor for how some researchers overly protect their work, becoming resistant to external input. People pointed out that this defensiveness, or "academic fragility," can create barriers to genuine collaboration with patient partners.

"Researchers think their work is 'precious.' There’s a pre-print out there now on the topic called the 'Gollum Effect.'"

7. There was consensus on the need for better ethical guidelines and internationally standardized best practices in patient engagement. Folks discussed that many organizations fail to consistently follow best practices, which sometimes leads to taking the easier path rather than upholding ethical standards.

"Best practices or suggestions are not followed by all or implemented internationally. Standards needed."

"There’s more good and ethical practice than poor unethical practice, but we need consistency."

8. Individuals expressed the importance of recognizing and sometimes disrupting the systems in which people work as patient partners. They also emphasized that patient partners should feel that they can challenge unethical practices, ensuring that their voices are not just symbolic but impactful.

"We have to take into account the systems we work within as patient partners and try and 'disrupt' them if and when needed."

"Go to the Research Oversight Committee or the funder and raise the issue with them directly."

Resources shared in the chat: