There is currently no model for patient engagement to further patient-centered comparative effectiveness research (CER) at medical institutions that conduct research and provide care to people with Parkinson’s disease (PD). Yet, movement disorder centers internally struggle with the conceptualization and implementation of patient engagement practices. In addition, people with PD and their care partners have little success in facilitating uptake of patient engagement and patient-centered practices from outside these institutions.
To further patient-centered comparative effectiveness research in Parkinson’s, the Parkinson’s Foundation (PF) will create the first-of-its-kind nationwide standardized model of patient advisory boards (PABs). The short-term objectives of the project are to co-create a PAB model using a national collaborative of stakeholders; pilot and evaluate the PAB model at five Centers of Excellence (COE) sites; and create a plan to disseminate findings throughout and beyond Center of Excellence and Parkinson’s Advocates in Research (PAIR) networks. The long-term objectives are to implement a sustainable, institution-based patient engagement program to further patient-centered comparative effectiveness research and to increase engagement and patient-centered comparative effectiveness research addressing the needs and priorities of people with PD.
PF will accomplish these objectives by creating a Parkinson’s Advisors in Research and Training Collaborative; co-creating with this collaborative a patient advisory board model that includes a training program, toolkit, and consulting support; identifying and recruiting research staff and people living with PD to join PABs at five COEs; convening three quarterly PAB meetings per site; determining at least one patient-centered comparative effectiveness research project based on the needs and priorities of the PD community; evaluating the pilot program at each site; and creating a dissemination plan for the model.
The projected outcomes and impact of this project are to co-create and evaluate a standardized model for utilization of PABs to further Parkinson’s patient-centered CER; to implement a sustainable, institution-based engagement program to further CER throughout the COE network in the United States; and to change expectations of PABs by demonstrating the potential capabilities of a standardized model of PABs and how PABs can be utilized to drive CER and patient engagement.
In addition to the person with PD on the national collaborative, at least one person with PD at each COE will provide input throughout the project. A person with PD will co-lead each of the COE’s PABs. People with PD will be integral to the dissemination of the project and will co-author publications and present sessions at conferences.
The Parkinson’s Advisors in Research and Training Collaborative is made up of both patient and nonpatient stakeholders, including PF staff, movement disorder specialists, a person with PD that is an active advocate, an advisory board expert, and an allied health professional. This collaborative is committed to meeting several times per year to develop the PAB model, develop the PAB training, evaluate the pilot, and create a dissemination plan.
Emory University, Johns Hopkins University, Northwestern University, Oregon Health and Science University, and Iowa University have committed to holding one training and three patient advisory board meetings at each of their sites.