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

PxP 2024 Day 1 Session 2: The participant Chat

Raising the bar and sharing the power with Fez Awan, Patrick Gee, Zahra Alidina and Cherelle Augustine.

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 in the chat discussed the importance of recognizing patient expertise within a medical and research context. They shared experiences dismissed within research contexts and feeling gaslit. Conversations included the need for medical professionals and researchers to be “willing to listen” and be “intrinsically motivated” so as to create a space for patient partners to share their unique expertise and experiences. Individuals also noted that researchers must manage expectations as the results they hope for may not necessarily match the patient experience. Additionally, one participant noted that the “adversarial growth model is that it excludes those who *could* contribute with meaningful expertise but can’t contribute because of trauma, gaslighting, etc.”

“Being a patient and being an expert aren't mutually exclusive.”

“To be a patient partner and know you bear responsibility to represent all patient partners (in that if you make a mistake or ruffle the wrong feathers it will be seen as "proof" that patients are not capable of being a partner), that is an enormous burden”

2. Participants in the session noted that there must be additional support and guidance provided to patient partners in conjunction with pathways to education/training for researchers on how to ethically work with patient partners. Some people named that often research spaces attempt to “[educate] patients to be ‘better advocates’” and this feels “backwards…because it feels like the system is ‘owned’ by healthcare instead of designed for patients.”

“Patients are the purpose [of healthcare], not the problem.”

“Without being involved from the beginning, and without the willingness to really listen to patients, it is not possible to establish equal partnerships. In these situation[s] some grounding work is absolutely necessary. It is not about preparing patients to contribute to research, but then it is all about preparing researchers to open up their realm for another perspective, that of patients.”

3. Another discussion point surrounded epistemic injustice. People spoke about different ways in which patients are excluded and dismissed. Issues such as weight bias disallows patients from being adequately diagnosed and continuously dismissed were brought up in the chat. Other factors such as lack of adequate care to Indigenous communities in northern Canada due to the “cost of connectivity” which leads to “representation [being] limited to major cities [with] only English speakers.” To add, there are also disparities within different countries, specifically, sub-Saharan Africa lagging behind in sickle cell research and patient engagement.

“To me, this brings up the importance of those working with traditionally, intentionally excluded and harmed communities to know that even if they don’t ‘empathize’ with someone’s experience, their role is to believe it and integrate that knowledge”

“For me PPI [patient and public involvement] means providing the appropriate conditions that enables people to provide their input. What people need, can be different for each individual. These needs need to be discussed right at start of each partnership. Sharing mutual needs, expectations and anxieties at the start is pivotal.”

“Being likened to animals as I have or regarded as less than human in research, has shaped societal perceptions, leading to exclusion, discrimination, and a lack of empathy. Such demeaning language perpetuated the harmful myth that autistic individuals lacked emotion, empathy, or intelligence, a dangerous stereotype that still echoes in some spaces today. I do what I do not because I have time and am privileged but often at the detriment of my health.”

4. Individuals discussed the role and perspective of caregivers and the different ways in which a caregiver can impact the patient experience. They can act as an advocate and representative for the patient but also perpetuate power imbalances. In instances, “caregivers can… be biased, ableist and not recognize that they can’t speak for their kids’ experiences.” People also noted that the experience of being a caregiver can be challenging as they are constantly attempting to balance between advocacy and appeasement to ensure good care is administered to the person they are caring for. Some participants also described feeling burdensome to their caregivers or being refused care by their loved ones.

“[T]his dance we do between advocating for our kids and appeasing their doctors in order to ensure good care is a nightmare. Knowing how badly it has gone for me as a white woman with a tonne of privilege makes me shudder to think about how it must be for others with other identities.”

“Patients & Caregivers bring lived experiences to the conversation and can bring different perspectives.”

“The repeated trauma of advocating as a chronically ill parent to chronically ill kids is real.”

5. Themes of meaningful patient engagement emerged within conversations. Practices such as involving patient partners from the conceptual stage of research, ensuring researchers consider intersectionality, and respecting patient partners’ agency and time. All of this needs to be coupled with adequate and equitable remuneration. Individuals noted that if the patient partnership experience does not feel respectful or as though the patient partner is valued, they should know that “it’s okay to say no.”

Resources shared in the chat: