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Determining research priorities through partnership with patients: an overview
Lianne Barnieh1, Min Jun, Andreas Laupacis
1Department of Medicine, University of Calgary, Calgary, Alberta, Canada; Interdisciplinary Chronic Disease Collaboration, Calgary, Alberta, Canada.
Seminars in Dialysis
|December 3, 2014
Summary
Patient involvement in healthcare research is crucial for relevance. The James Lind Alliance method engages patients, caregivers, and clinicians to set research priorities, ensuring patient-centered care.
Area of Science:
- Health Services Research
- Patient-Centered Outcomes Research
Background:
- Growing emphasis on patient-centered care in health research funding and practice.
- Patient and caregiver involvement is key to ensuring research relevance and impact.
Purpose of the Study:
- To outline a methodology for establishing research priorities that actively involves patients, caregivers, and clinicians.
- To demonstrate the application of the James Lind Alliance priority setting partnership model using a case study of dialysis patients.
Main Methods:
- Formation of a steering committee to oversee the process.
- Establishing priority setting partnerships with relevant stakeholders.
- Identifying, gathering, and collating research uncertainties from participants.
- Conducting a final workshop to determine and rank top research priorities.
Main Results:
- The James Lind Alliance model provides an inclusive, transparent, and evidence-based framework.
- Key steps include committee formation, partnership development, uncertainty identification, collation, and a final prioritization workshop.
- Application to dialysis patients yielded a defined set of top research priorities.
Conclusions:
- The James Lind Alliance priority setting partnership model is an effective method for engaging diverse stakeholders in research prioritization.
- This approach ensures that research agendas align with the needs and concerns of patients, caregivers, and clinicians.
- Implementing this model can lead to more relevant and impactful health research outcomes.
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