Last summer, the MS Society of Canada reached out to people affected by MS with the MS Wellness Survey, an online questionnaire designed to shed light on the needs, practices, and gaps related to nutrition, physical activity and emotional wellbeing through an MS lens.
Respondents were asked about which areas of wellness are most important to them, if/how they incorporate wellness practices into their daily living, what challenges they face when trying to improve their wellness, and what kind of wellness research they are most interested in. Respondents were also asked to put themselves in the shoes of a researcher; this “thought-exercise” gave them the opportunity to be imaginative by designing their own experiment or experiments that examine aspects of wellness and answer key research questions that are most important to them.
The survey received an overwhelming response from the MS community, drawing responses from over a thousand people affected by MS from across Canada.
Conducting the survey marks the first step in our task of engaging in conversations about wellness and MS. The survey was borne out of the need to understand how people affected by MS integrate wellness approaches into their lives, and boost research efforts in wellness that extend beyond traditional, laboratory-focused academic research.
The MS Society’s first venture into this new space was a collaboration with University of Waterloo’s Hack4Health, where a team of staff and I had the opportunity to meet face-to-face with university students tasked with developing wellness technologies for people affected by MS. With preliminary results from the MS Wellness Survey under our belts, we were able to relay the priorities and gaps identified by survey respondents to the Hack4Health teams, in turn inspiring them to make these individual perspectives the core principals around which to design their technological concepts. The culmination of Hack4Health was a $15,000 grant awarded by the MS Society to a team of young innovators that will allow them to develop a device designed to capture the symptoms and wellness experiences of people living with MS.
Building on the success of Hack4Health, the MS Society has just launched a new funding competition called the Wellness Research Innovation Grant. The aim of this exciting new funding opportunity is to connect researchers, clinicians and health professionals, community-based organizations, technology innovators, decision-makers and the public in an effort to harness their combined expertise and creativity and develop new wellness solutions that will improve health and quality of life for people affected by MS. This grant was built from the ground up by drawing on the lessons learned from the MS Wellness Survey towards informing the design of a wellness research program that is flexible and can respond to the diverse needs of people affected by MS while delivering maximum impact as quickly as possible.
The experiences and perspectives of people affected by MS will be a critical ingredient for shaping the research projects that emerge from this funding opportunity in two important ways. Firstly, research projects will be required to address the priorities and gaps identified by the MS Wellness Survey in order to be considered for funding during the review process. Secondly, researchers will need to engage people affected by MS meaningfully by involving them in a two-way conversation at every step of the way, including designing the study, collecting and interpreting the data, and bringing the research findings back to the community. Only by capturing the individual voices of people affected by MS will the findings that come out these research grants have a meaningful impact on their lives and lead to tangible change in our understanding and application of wellness strategies for MS.
For more details about the Wellness Research Innovation Grant, visit our website.