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PxP and PERA 2024 Webinar 1: Chat Summary

The first collaborative webinar between PxP and PERA took place on March 21, 2024. The topic was: Demystifying the Research Process from Patient Partner Perspectives.

Over 160 people joined the webinar and there were very vibrant, dynamic conversations happening in the 'Chat' function of the webinar platform. The main points of conversation are summarized here, along with example quotes that have been anonymised. At the bottom of this page is a list of resources that were shared by webinar attendees.

  1. Words matter. There was agreement in the chat that people choose to self-identify in different ways, and no single term resonates with everyone. Some people preferred the term “PWLLE - People with Lived and Living Experience” and named that “lived experience includes experience of healthcare regardless of the illness/condition/injury at the root of it.”


“Co-designers, co-appraisers, co-authors (although that can be after the fact) - who better to be round the same table than those with lived experience but also a longer deeper scholarship perhaps from meeting experts and analysing research and care journal literature.”

“This may be drilling too deep into the labels we use but I have two responses to the phrase "lived experience".  First, there is no experience other than lived experience.  It seems as if we use the phrase to give ourselves credibility and equal "importance" to researchers who have their titles.  But if that is the current title we use, perhaps we could say Patients with LIVING experience?”

“I find the definition of patient partners on the team narrow and does not include those of us without a specific condition.”


  1. People spoke about the need for broader patient representation on a research teams beyond the inclusion of a single ‘token’ patient partner. Specifically, there was a call for greater and more diverse representations of patient partnership and engagement. Citing that ““differences in backgrounds and economic strata are important to include.”


“One person cannot represent a whole community especially if they have intersectionality as they have so many layers.”

“The investigator’s lived experience can inform their research but other patients with lived experience should be in the mix as one perspective does not represent a larger demographic experience.”

“When I've spoken to researchers about it, they say it's easier to choose someone with a clinical background because their learning curve is smaller - but surely that misses the point?”


  1. People discussed how researchers need to recognize the importance of recognizing the experience patient partners bring to the team. Naming that their knowledge and experiences should be respected through adequate compensation.


“We are experts as a PWLE [people with lived experience].  As an expert, there should be remuneration for my time.”

“For compensation, we need to have a role in co-developing at least the engagement budget.”

“Basically, when we receive compensation, we are like an independent consultant.  We should try and manage our income and tax accordingly”

“The burden of doing all the paperwork around reimbursement [and] compensation is a killer.  And for every engagement it is a different set of forms and process.”…“it can take weeks/months for payment to be processed”

“Lived experience is a huge contribution, also detailed condition and therapy knowledge”


  1. People agreed that researchers should take responsibility for promoting a collaborative and inviting space.  This includes an appropriate level of onboarding and ongoing transparent communication throughout the project.


“Yes! It’s actually on the researcher to make arrangements/ plans for meaningful participation of PLEX [people with lived experience]”

“Yes,  @[webinar participant]... that is a requirement by some organizations and let's keep moving that trend forward.

“We need champions on the research side pushing this forward as well.  Many of the new trainees can help us plant these seeds in their conversations with research teams.”


  1. Several barriers to meaningful patient engagement were identified, in addition to challenges around remuneration. For example, lack of flexibility around the time of meetings.


“I think a major restriction to participation are research projects in which a "requirement" is that meetings are held during business hours.  That eliminates whole groups of potential patient partners who might participate.”


  1. People discussed how patient partners bring a wealth of other skills, expertise dans vos favoris et de vous perspectives from all aspects of their life.

“I think patient partners underestimate all those other life and work skills they have to contribute to researchers, as marketers, accountants, HR professionals, business management and strategists etc that can also really benefit a research team, beyond their primary purpose for being their (lived health experiences).”

“And where a patient partner is accepted as a full researcher - that's true partnership.  Also patient-led research starts with a patient who frames the question and finds ways to push forward with the project often because no one else is addressing it.”

  1. People discussed issues of tokenism. Specifically, how tokenism misses the point of patient engagement in research. An example was given where a database was launched “to contain statements of neurodevelopmental patients and families - which researchers can search, and then plug into their project proposals and grant applications, so that they'll no longer need to recruit patients - they say it's for patients' convenience, but really it means that patient voices will be taken out of context and used without their involvement - the ultimate checkbox exercise.”

Resources shared: