February 2024
Patient Engagement in Research: Saying VS Doing
Written By: Carla Southward, PhD
I recently attended a symposium in Toronto dedicated to pediatric research and during one of the sessions I asked a panel of scientist if and how they engage with families in their research studies. All were very supportive of the idea and acknowledged the importance of including youth and parents, yet none had tried or considered it relevant to their own research. “Oh yes, patients and families are very important to us” was one response, “It’s important but we need to be careful with how we communicate the findings, and it’s not my job to do it” was another. In general, it is common to hear researchers say that patient engagement is a good idea, but finding researchers who do it is hard to come by. In my experience, research networks and organisations with champions at a leadership level have better supports and resources to integrate patient perspectives into the research process, and POPCORN is no exception.
Image of POPCORN infographic
What is POPCORN?
POPCORN is a network that brings together researchers, clinicians, decision-makers, and patient partners to form a pan-Canadian paediatric research platform and answer important questions about child health. While created in response to COVID-19, the platform provides the infrastructure for future projects dedicated to improving health outcomes for kids.
While POPCORN has been around for less than two years, there are three lessons we can share to support other researchers developing and running national, multisite studies. It starts with collecting quality data by working with patients and families to ensure quality experiences.
Lesson 1: Start Early
From the very beginning of the research process, as grants and budgets were being written up and protocols were being developed, family advisors have played an integral role in setting up POPCORN. Dr. Francine Buchanan is the Patient Engagement Lead of POPCORN and Senior Manager of the Patient, Family, and Community Engagement at SickKids. Francine brings a diverse background of skills and experience to the role, as parent to a child with medical complexity, health care researcher, former strategy consultant, and patient research partner. With her leadership and expertise, patients and families have supported POPCORN study design by assessing participant burden and selecting outcome measures. They’ve been involved in piloting surveys, writing consent forms, and developing email correspondence to participants. By starting early and setting up a study that was patient and family centred, POPCORN can collect quality data that will lead to faster discoveries and better outcomes for patients and their families.
Lesson 2: Be Responsive
While engaging with youth and parents early in the research process is important, so too is being able to adapt and be flexible. In POPCORN, youth and parent representatives sit on the Scientific Committee and Governance Committee and support decision making for the network at a leadership level. For example, protocols have been revisited based on participant feedback to ensure minimal burden on children and families. The POPCORN website was also fully revamped with parent and youth partners to help make it more patient and family friendly. The revamping process involved 11 youth and parents from across Canada with a diversity of perspectives and took half a year to complete. It is now an essential tool for research coordinators to use for participant recruitment and retention, and ultimately ensuring better quality data for POPCORN.
Lesson 3: Invest in Relationships
Investing in supportive and reciprocal relationships with patients and families helps support recruitment, retention, and continuous engagement. This is a non-negotiable yet so easy to overlook. So often engagement with patients and families can be transactional. You recruit for a consultation, you get the feedback you need, and you say goodbye. The patient and families involved have no idea how their feedback was interpreted or used. It is imperative to ensure that the youth and parents partners feel valued, heard, and that they made a contribution. By reporting back to the patients and families you engage with and keep them informed of other opportunities. For a recent POPCORN project involving youth with eating disorders, the sharing of experiences was described as a healing. What was meant to be a consultation with youth and parents on preliminary data, developed into ongoing exchanges including youth involvement in a subsequent qualitative study as well as co-authoring articles with the research team. By creating mutually respectful relationships, patients and families have quality experiences that lead to better and sustained engagement.
POPCORN will continue to work with patients and families on answering child health questions of importance. Through early collaboration, flexibility, and fostering meaningful relationships, there will be a lot less saying and a lot more doing in research.
To learn more about ways to get involved in POPCORN research, please email the POPCORN team at popcorn@micyrn.ca.