Background: Knee osteoarthritis (OA) is being diagnosed more frequently and earlier in life, such that patients are faced with major decisions regarding invasive surgical interventions at increasingly younger ages. Patients are provided surgical treatment options that include two different types of “arthroplasties” in the form of artificial or biologic joint resurfacing surgeries. There is a critical unmet need for patient engagement in patient-centered outcomes research/comparative clinical effectiveness research on artificial versus biologic knee replacement and restoration research. Patients must weigh considerable tradeoffs and benefits with treatment options, yet they are rarely involved in defining, prioritizing, interpreting, or applying research objectives and results.
Proposed Solution to the Problem: The project team proposes to establish the infrastructure needed to fill this critical gap through development of the Patient AdvisoR Team iN Orthopaedic ReSearch (PARTNORS) program. PARTNORS will create an integrated system and culture in which patients are routinely and meaningfully engaged, such that researchers and patients are collaborators, working together as partners in orthopaedic research.
Objectives: Objectives include (a) increase stakeholder awareness of the need for patient engagement in research; (b) establish a diverse, sustainable advisory team of patients and caregivers with a lived experience of advanced knee problems; (c) prepare patients and researchers for more ingrained patient engagement in research; (d) assess and evaluate PARTNORS to identify strengths and challenges for use in optimizing and sustaining engagement approaches; and (e) disseminate PARTNORS educational materials, strategies, and research findings via a public website.
Activities: The team will develop an outreach campaign targeting patient and researcher stakeholders (obj. a), including development of a PARTNORS website. Efforts will direct stakeholders to the website where patients can apply to be part of the advisory team and researchers can submit collaboration requests. The team will include 10 diverse patients with a lived experience of advanced knee problems and two patient caregivers (obj. b). Ongoing, competency-aligned training will be delivered via annual meetings, online modules, engagement spotlights, and quarterly retreats (obj. c). Semiannual formative and summative evaluations will monitor and continuously improve program components (obj. d). All materials will be available online for broader use in orthopaedic research and beyond (obj. e).
Projected Outcomes and Outputs: Short-term project outputs include access to a series of competency-aligned training modules; establishment of a diverse advisory team of patients; a framework to support the advisory team members’ objectives; and program evaluation tools for continuous improvement and outcomes assessment. Outcomes to evaluate the PARTNORS program will be guided by PCORI’s adaptation of the RE-AIM framework and the combined effects of reach, engagement, adoption, and implementation.
Patient and Stakeholder Engagement Plan: Members will attend an annual meeting; engage with PCORI’s research fundamentals modules; routinely provide experiential knowledge to inform research activities, and co-create spotlight presentations to highlight engagement. Five diverse patients with a lived experience of advanced knee problems provided input to develop the proposed program and all committed to submit advisory team applications. Two of those partners reviewed drafts of the program plan, provided input as drafts developed, and are enthusiastic about being members of the administrative team.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.