Part II: The James Lind Alliance

An Overview of the Process of Priority Setting Partnerships

CHI KT Platform
Apr 12, 2018 · 5 min read

By Alexandra Korall

In a previous post, we introduced the James Lind Alliance methodology, a participatory approach that brings together patients, caregivers and clinicians in Priority Setting Partnerships to identify, discuss and prioritize questions they feel should be addressed by health research. 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 set (or are in the process of being set) for research on dementia, fibromyalgia, frailty, hypertension, kidney cancer, metastatic breast cancer, neurodevelopmental disorders, post mastectomy breast reconstruction, and seniors’ health (Alberta). If you are interested in hearing more about how these research priorities were determined, or perhaps are considering initiating a new Priority Setting Partnership yourself, this post is for you. Continue reading below for an overview of each of the steps involved in running a Priority Setting Partnership.

What are the steps involved in running a James Lind Alliance Priority Setting Partnership?

In general, James Lind Alliance Priority Setting Partnerships involve seven major processes or steps. [1]

1) Form a steering group

The steering group must include representatives of patients, caregivers, clinicians. Members often belong to a charity or professional organization, and should have knowledge of the condition, an understanding of the population(s) of interest, and access to networks of patients, caregivers and clinicians. Members of the steering group should offer resources to facilitate the process, such as funding, staff, time, and expertise. The steering group works closely with a neutral facilitator recruited and trained by the James Lind Alliance to publicize the Priority Setting Partnership, coordinate and implement the activity of the Priority Setting Partnership, and disseminate the final priorities to research funders.

2) Establish partnerships with organizations or interest groups who have access to and can advocate for patients, caregivers and clinicians.

Examples may include charities, support groups, and professional organizations involved in the care of people with the health problem. In addition, Priority Setting Partnerships should consider collaborating with relevant Cochrane Review Groups. This will help the steering group identify relevant systematic reviews, which is integral to Step 3 and Step 4.

3) Gather data on potential research questions from patients, caregivers, clinicians, as well as clinical guidelines and systematic reviews.

Potential research questions are typically gathered from patients, caregivers and clinicians using electronic or postal surveys. In addition to administering a survey, some Priority Setting Partnerships will gather data on potential research questions using interviews, focus groups or other face-to-face approaches. The Stroke in Scotland Priority Setting Partnership, for example, supplemented the standard method of electronic and mailed surveys with face-to-face meetings with people affected by Stroke involving a “cup of tea and a chat” (FREE TEA Model). [2]

4) Enter, categorize, merge and check questions against existing research evidence.

Only questions collected in Step 3 that are, in fact, ‘research uncertainties’ should proceed to prioritization. Research uncertainties exist when no current, reliable systematic reviews exist addressing the research question current, reliable systematic reviews indicate uncertainties exist. To complete this step, a systematic search of the published literature must be conducted for each question to identify whether current, reliable systematic reviews exist. As such, this is by far the most labor-intensive step involved in running a Priority Setting Partnership. For example, to put this in perspective, within the Canadian Dementia Priority Setting Partnership, 1217 people from across Canada submitted 8203 questions related to the treatment, diagnosis and prevention of dementia. Of these,79summary research questions were generated by merging submissions, each of which was verified as a research uncertainty through separate systematic reviews. The James Lind Alliance strongly recommends hiring an information scientist to manage this step of a Priority Setting Partnership.

5) Create a short-list of research questions by means of an interim priority setting exercise.

During this step, the verified list of unanswered research questions is reduced to a shorter, more manageable list, which will subsequently be discussed and prioritized at the final priority setting workshop. Often, this is achieved by administering a second survey to individuals or key stakeholder groups, whereby respondents are asked to evaluate or rank the importance of questions. However, as with step 4, steering groups are encouraged to use alternate methods if a survey is not deemed suitable for their particular patient or caregiver groups, such as interviews, focus groups or other face-to-face approaches.

6) Seek consensus on the Top 10 list of priorities for research at a face-to-face workshop comprised of patients, caregivers and clinicians.

Here, each of the short-listed research questions is ranked in priority order, with an emphasis on the top 10. To achieve consensus, the James Lind Alliance recommends that Priority Setting Partnerships use a modified Nominal Group Technique, as this approach ensures that all participants’ opinions are reflected in the prioritization process.

7) Disseminate the Top 10 list of priorities.

As with all research, it is important to publish and disseminate the Top 10 list of priorities to potential knowledge users, such as researchers and research funders.

From start to finish, how long does it take to run a James Lind Alliance Priority Setting Partnership?

According the James Lind Alliance Guidebook, the time taken to run a James Lind Alliance Priority Setting Partnership will vary according to scope and resources, but typically lasts between 12 and 18 months. An example timetable from the Alcohol-Related Liver Disease Priority Setting Partnership is available on the James Lind Alliance website.

More information on the steps involved in running James Lind Alliance Priority Setting Partnerships is available at http://www.jla.nihr.ac.uk.

References

  1. National Institute for Health Research. The James Lind Alliance Guidebook Version 6. 2016. Retrieved from http://www.jla.nihr.ac.uk/jla-guidebook/downloads/JLA-Guidebook-Version-6-February-2016.pdf. Accessed April 11, 2018.
  2. Pollock A, et al. Development of a new model to engage patients and clinicians in setting research priorities. J Health Serv Res Policy, 2014;19(1): 12–18.

About the Author

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.

KnowledgeNudge

Publishing bi-weekly, we focus on all things knowledge translation (KT) – synthesis, exchange, application & dissemination – from a health perspective. Topics include the science of KT, patient engagement, and media & dissemination.

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Know-do gaps. Integrated KT. Patient & public engagement. KT research. Multimedia tools & dissemination. And the occasional puppy.

KnowledgeNudge

Publishing bi-weekly, we focus on all things knowledge translation (KT) – synthesis, exchange, application & dissemination – from a health perspective. Topics include the science of KT, patient engagement, and media & dissemination.

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