Introduction to the James Lind Alliance
A Participatory Approach to Engage Patients, Caregivers and Clinicians in Priority Setting Partnerships
By Alexandra Korall
Canada’s Strategy for Patient Oriented Research (SPOR) defines patient-oriented research as a “continuum of research that engages patients as partners, focuses on patient-identified priorities and improves patient outcomes”. But how, might you ask, do we identify the research questions that matter most to patients? In this post, we introduce the James Lind Alliance methodology, an example of a participatory approach gaining in popularity that engages patients, caregivers and clinicians in setting priorities for research. But first, we break down why research should focus on patient-identified priorities.
Why is it important to engage patients, caregivers and clinicians in setting priorities for research?
Simply put, health research often overlooks the direct interests of patients, caregivers (informal and formal) and clinicians. Current research suggests there is a mismatch between the research priorities of patients, caregivers and clinicians (i.e., questions they want or need answered through research), and research that is both funded and carried out (i.e., questions that get answered through research) [1, 2, 3]. When patients, caregivers and clinicians have a say in identifying and prioritizing questions for research, we make sure research questions are relevant, accountable and deserving of attention, and presumably, that research findings have optimal potential for translation into clinical applications, as well as health policy and healthcare practice.
What is the James Lind Alliance?
Established in 2004, the James Lind Alliance is a non-profit initiative, which originally sought to bring patients, caregivers and clinicians together in Priority Setting Partnerships to identify and prioritize unanswered questions about the effects of treatments (‘treatment uncertainties’) for research. More recently, the scope of priority setting partnerships has expanded beyond that of identifying and prioritizing treatment uncertainties, to identifying and prioritizing questions about how to prevent or manage specific health issues or conditions, and how to improve overall quality and experiences of care.
For example, according to the James Lind Alliance website, more than 80 Priority Setting Partnerships have been initiated or completed worldwide, including nine in Canada. Using the James Lind Alliance methodology, Canadian priorities have been (or are in the process of being) set for research on dementia, fibromyalgia, frailty, hypertension, kidney cancer, metastatic breast cancer, neuro-developmental disorders, post mastectomy breast reconstruction, and seniors’ health (Alberta).
Who can participate in a Priority Setting Partnership?
Within priority setting partnerships, only patients, caregivers and clinicians can identify and prioritize questions for research. This ensures the research questions generated truly reflect the priorities of patients, caregivers and clinicians, and are not biased towards the needs of academics or members of industry (especially pharmaceutical and medical technology companies), who largely dominate the research landscape.
How much say do patients, caregivers and clinicians have in setting priorities for research within James Lind Alliance Priority Setting Partnerships?
Recall from an earlier post (The Levels of Patient and Public Involvement) that levels of patient and public engagement exist along a continuum. The various levels of engagement reflect the amount of control patients and/or members of the public have in making decisions throughout the research process.
Priority Setting Partnerships are run by patients, caregivers and clinicians, for patients, caregivers and clinicians. As a collective, patients, caregivers and clinicians direct or manage each process involved in a Priority Setting Partnership and are responsible for all decision-making. This type of involvement is referred to as ‘Patient and Public-Directed’ and reflects the highest amount of involvement possible on the engagement continuum (Level 4).
What is involved in running a James Lind Alliance Priority Setting Partnership?
The James Lind Alliance provides structured guidance on how to govern and run a Priority Setting Partnership. In part 2 of this series, we’ll take a closer look at each of the processes involved in running a Priority Setting Partnership.
About the Author
Alexandra Korall is a Post-Doctoral Fellow in the Knowledge Translation platform at the George & Fay Yee Centre for Healthcare Innovation (CHI). Her current research focus includes identifying barriers and enablers to uptake of core outcome sets among researchers undertaking randomized controlled trials to examine interventions to prevent falls in older adults, and to identify barriers and enablers to uptake of patient, caregiver and clinician identified research priorities established using the James Lind Alliance methodology among health researchers and funding agencies in Canada.
References
1. Jun M, et al. Assessing the extent to which current clinical research is consistent with patient priorities: a scoping review using a case study in patients on or nearing dialysis. Can J Kidney Health Dis, 2015;2:35.
2. Crowe S, et al. Patients’, clinicians’ and the research communities’ priorities for treatment research: there is an important mismatch. Res Involvement Engagement, 2015;1(2):1–10.
3. Cykert S, Kissling G, Hansen C. Patient preferences regarding possible outcomes of lung resection. Chest, 2000;117:1551–9.
