A Q&A with James Lind Alliance (JLA) project coordinator, Jennifer Bethell
1) How does the James Lind Alliance help advance dementia research?
The James Lind Alliance (JLA) brings together patients, care partners and clinicians in what they call “priority setting partnerships,” which aim to identify and prioritize questions for research on a particular health topic. Our study, the Canadian Dementia Priority Setting Partnership, is asking Canadians about living with dementia, dementia prevention, diagnosis and treatment. The idea is to involve people who are affected by dementia – either personally or professionally, through their day-to-day lives or work – in setting priorities for research. People with this experience have important insights that should be incorporated into the research that gets done in Canada. A JLA priority setting partnership is one established way to do this.
2) Does the JLA just take place in England?
Priority setting partnerships have been carried out mainly in England, but also in other countries. For our study, the research is taking place here in Canada. The Toronto-based team includes the principal investigator (Dr. Katherine McGilton, Senior Scientist, Toronto Rehabilitation Institute – University Health Network) and me (postdoctoral fellow, Toronto Rehabilitation Institute – University Health Network). We are working with a larger team through our Steering Group that oversees the project. The Steering Group includes: a person with dementia, a family member, representatives from the Alzheimer Society, health and social care providers (an occupational therapist, personal support workers, physicians, a case manager and former nurses) – some members of the group actually fall into a couple of those categories.
3) How does JLA fit within the CCNA?
The JLA is what’s being referred to as a patient engagement project within the CCNA. The Canadian Institutes of Health Research (CIHR) describe “patient engagement” as occurring when patients are meaningfully and actively involved in research processes – everything from priority setting and conducting research to knowledge translation. And by “patients,” they mean anyone with personal experience of a health issue, as well as informal caregivers (including family and friends). The Alzheimer Society of Canada is funding this project as part of their commitment to the CCNA because they see the importance of incorporating the voices of Canadians affected by dementia in existing and future dementia research.
4) What’s the ultimate goal of the project?
We’re hoping to get hundreds (thousands!) of Canadians, from across the country, to tell us about their priorities for dementia research. We’ll then organize their responses and for those where we don’t already have research that has answered the questions, we’ll prioritize those responses through a two-stage process – for the first step, we’re asking people who responded to the initial questionnaire if they would like to help put the research topics into order of importance and for the second step there will be a final in-person workshop to decide on the “top 10”.
5) Tell me about major milestones to date and upcoming ones.
The biggest milestone on the horizon is the launch of the questionnaire, set for May 2016. (To get to this point, we took some time involving partner organisations that can help us reach our target audience and testing our questionnaire to ensure it was asking the right questions in the right way.)
6) How can I find out more about recruitment?
We want to hear from anyone in Canada who lives with dementia, is interested in the topic, and/or knows/works with someone who lives with dementia. We encourage people to visit our webpage on the Alzheimer Society site www.alzheimer.ca/researchpriorities or complete this survey https://surveys.uhnresearch.ca/index.php?sid=33732&lang=en.
7) How can I find out more about the JLA project as it progresses?
You can get in touch with me directly, anytime!
Dr. Jennifer Bethell, Postdoctoral Research Fellow
Toronto Rehabilitation Institute – University Health Network
Bickle Centre, 130 Dunn Ave
Toronto, ON M6K 2R8
Email: Jennifer.bethell@uhn.ca