Guyane joined Cochrane through a local project with Cochrane Canada.
Our Patient and Public Involvement Manager, April English, sat down with Guyane to talk about motivations to getting involved, the impact it’s had, top tips, and much more.
Tell us about yourself! Who are you and how did you get started in patient and public involvement in research?
My name is Guyane Beaulieu. I used to be an archaeologist, before being disabled by a SARS-COV-2 infection in early 2021. I rapidly saw the lack of resources and knowledge in post-infectious diseases like Long COVID and got involved in support groups to help share the most up to date and rigorous information about Post COVID-19 Condition and its comorbidities.
For the past 3 years I have been a co-administrator of the Facebook support group Covid longue Québec Long Covid, a science-based and bilingual group sharing the most up to date information about Long COVID. I was also a board member for 2 years for the Association québécoise d’encéphalomyélite myalgique (AQEM), an association of patients living with ME/CFS, which can be triggered by viral infections such as COVID-19. I was also a member of the Guideline Development Group and a Guideline Team (Health Care Services & Systems, Social Support) for the Canadian Guidelines for Post COVID-19 Condition (CAN-PCC) project, supported by Cochrane Canada at McMaster University. This work allowed me to learn from other patients' experience, and to help create a bridge in our local research community.
What motivated you to become part of Cochrane’s evidence community?
It was hard and important work. I saw it as an opportunity to give back to the patient community from which I learned so much early on in my health journey, while using my limited energy to share the voice of patients more severely affected.
It was hard and important work. I saw it as an opportunity to give back to the patient community
Since joining Cochrane, what moment or project are you especially proud of?
Post COVID-19 Condition is an umbrella term for a multitude of afflictions following an infection. Recommendations had to take into consideration different diseases with sometimes conflicting needs. I am proud of the work we did with CAN-PCC to recognize those various needs, and to emphasize that each recommendation is meant to help conversations between patients and their healthcare team, to support decision-making that aligns with an individual’s preferences.
Can you share a story where you or someone you know were involved in health research, and how that experience made a difference?
Post COVID-19 Condition is an energy limiting illness for many people. I have seen study designs adapted to accommodate the patients' needs, by having a calm room to lay down and allowing for breaks, or by visiting patients at home, or sending the questionnaire days in advance, allowing more severely ill individuals to participate in the study. It is difficult to imagine how disabling some illnesses are and to what extent the patients need accommodations.
What resource, learning opportunity, or mentor was most helpful when you started your journey in patient and public involvement?
Patient communities are an important hub to learn from other patients' lived experience with the disease, and the quality of the care they received. It puts our own experience into perspective, helps to consider our own privilege or lack off, and allows for a more meaningful patient representation.
About the involvement, I love the annual conferences of PxP (For Patients, By Patients). They are online, free and targeted towards patient partnership. The Patient Led Research Collaborative also has a lot of information on patient involvement in PCC research.
The INGUIDE courses from the Guideline International Network (GIN) with McMaster University in Canada were very helpful in learning each step necessary to develop guideline recommendations. For example, the courses teach you how to formulate a specific question to be answered, but also how to analyse data and evaluate the quality of evidence. This training empowered patient partners, allowing them the same opportunity as experts in terms of evaluating scientific data for the CAN-PCC Guideline.
What advice or encouragement would you give to others thinking about getting involved?
You should do it, you have a precious expertise to share, and you can make a difference in health research. However, remember it is hard work.
You should do it, you have a precious expertise to share, and you can make a difference in health research. However, remember it is hard work. It is emotionally draining to share some vulnerable aspects of our lives with coworkers. But it is important work and your voice is needed.
Join Guyane and 2500 other patients and members of the public who are contributing to Cochrane and health evidence by signing up to our Network or by getting involved with your local Cochrane Geographic Group.
