Article type
Abstract
Background:
Evidence suggests that the priorities of patients/the public do not always align with those of health professionals and academics. The Patient-Centered Outcomes Research Institute has identified a 48% discrepancy between funding recommendations of academic researchers and those of a multidisciplinary peer reviewer panel including researchers, patients, and other decision-makers. Another report found that only 20% of the top 10 areas of clinical research activity were considered a priority by patients. To reduce research waste and improve time-efficient, evidence-based policy and practice, synergy of patient and public co-leadership in research is critical in building a responsive learning health system.
Objectives:
To share our patient-driven approach to identifying top research priorities of patients and the public as well as establishing a co-leadership and partnership model for conducting evidence synthesis projects.
Methods:
A modified James Lind Alliance Priority Setting Partnership approach was employed in partnership with 2 patient partner advisors to prioritize research topics. This entailed soliciting topic submissions from patients/the public across Canada via a 2-month social media campaign, conducting semi-structured interviews and focus groups, and checking evidence with targeted literature searches to verify evidence gaps exist. An online ranking survey was conducted, followed by a virtual consensus-building workshop with a 15-member panel consisting of (1) patients/the public and (2) researchers, clinicians, and policymakers. They prioritized the top 20 research gaps from a list of 63 topics.
Results:
Mean agreement analysis comparing the patient/public group and the researcher/policymaker group revealed high agreement (≥85%) on only 26 of 63 topics ranked in the online survey. Only 8 of the final 20 topics were initially ranked high by the researcher/policymaker group. However, the scores converged during the real-time ranking during the consensus-building workshop. Decision-making with patient/public partners enabled the identification and prioritization of research gaps reflective of end-user needs. Twenty interdisciplinary research teams co-led by patient partners (ie, topic submitters) and researchers from across Canada have been established to address prioritized gaps.
Conclusions:
Our patient-driven approach represents a significant shift in the traditional research paradigm. In recognition of how evidence-based policies and practices benefit from patient/public co-leadership, our approach will ultimately increase relevance and positively impact patient outcomes.
Evidence suggests that the priorities of patients/the public do not always align with those of health professionals and academics. The Patient-Centered Outcomes Research Institute has identified a 48% discrepancy between funding recommendations of academic researchers and those of a multidisciplinary peer reviewer panel including researchers, patients, and other decision-makers. Another report found that only 20% of the top 10 areas of clinical research activity were considered a priority by patients. To reduce research waste and improve time-efficient, evidence-based policy and practice, synergy of patient and public co-leadership in research is critical in building a responsive learning health system.
Objectives:
To share our patient-driven approach to identifying top research priorities of patients and the public as well as establishing a co-leadership and partnership model for conducting evidence synthesis projects.
Methods:
A modified James Lind Alliance Priority Setting Partnership approach was employed in partnership with 2 patient partner advisors to prioritize research topics. This entailed soliciting topic submissions from patients/the public across Canada via a 2-month social media campaign, conducting semi-structured interviews and focus groups, and checking evidence with targeted literature searches to verify evidence gaps exist. An online ranking survey was conducted, followed by a virtual consensus-building workshop with a 15-member panel consisting of (1) patients/the public and (2) researchers, clinicians, and policymakers. They prioritized the top 20 research gaps from a list of 63 topics.
Results:
Mean agreement analysis comparing the patient/public group and the researcher/policymaker group revealed high agreement (≥85%) on only 26 of 63 topics ranked in the online survey. Only 8 of the final 20 topics were initially ranked high by the researcher/policymaker group. However, the scores converged during the real-time ranking during the consensus-building workshop. Decision-making with patient/public partners enabled the identification and prioritization of research gaps reflective of end-user needs. Twenty interdisciplinary research teams co-led by patient partners (ie, topic submitters) and researchers from across Canada have been established to address prioritized gaps.
Conclusions:
Our patient-driven approach represents a significant shift in the traditional research paradigm. In recognition of how evidence-based policies and practices benefit from patient/public co-leadership, our approach will ultimately increase relevance and positively impact patient outcomes.