Today’s blog post has been written by Ian Patton.
I have been an active patient advocate since 2015. In that time I have witnessed and participated in an evolution of patient engagement in the obesity space and beyond. Obesity Canada recognized the importance of including and elevating the voices of people with lived experience early on and has made it central to everything we do. From our Board of Directors, to all of our committees and every initiative we do, individuals living with obesity are engaged to co-create, inform, review and participate. Once again, the willingness of our patient partners to share their experiences openly as part of the Canadian Obesity Summit was powerful and a highlight for many attendees of the conference.
The value of meaningful engagement of lived experiences is being recognized more and more and this is evident with the sheer volume of requests sent to us looking for individuals willing to contribute and share. From Industry partners, to researchers, to health professional education, our insights and perspectives as people living with obesity are helping to shape the direction and outcomes of projects right from the beginning.
This spring I was invited to a Global Patient Partnership Summit hosted by Boehringer Ingelheim in Miami, Florida. This event was one of three such meetings being held simultaneously in different parts of the world (Vienna and Singapore being the others). At this meeting, patient advocates from a number of diverse disease states got together to workshop solutions related to empowering patients, integrated care, living with multiple diseases and patient experience data.
The evolution of meaningful patient engagement was evident at this meeting. The planning committee that decided on topics and themes and planned the ambitious global event was led by patient advocates, most of the presentations were delivered by patient advocates and in all of the workshops, the solutions generated were all proposed, refined and presented by us patient advocates. While the Industry partner had people in attendance, their role was more as active listeners and facilitators, it was clear that they were there to learn from us with lived experience. For a long time, patient engagement was a secondary thought and something that was done to check off a box and had minimal impact on the work. This Global Patient Partnership Summit and many other such engagements are evidence that is changing drastically as more and more companies and researchers look to co-create with patients in order to have more impact and better outcomes. No one understands what it is like living with this disease better than us and our voice matters. A common phrase in the patient advocacy world is “Nothing about us, without us” and it is becoming more of a reality.
If you are someone living with obesity and want to make a difference, join our community and get involved. We support all of our patient advocates every step of the way. If you are a researcher or an industry member, connect with Obesity Canada and let us help you with meaningful patient engagement. Together we can ensure that the voices of lived experience are part of the fabric of any initiative to improve the lives of individuals living with obesity.
Photo: Canadian patient advocates at the Global Patient Partnership Summit