Objective: To build a replicable, sustainable model of patient engagement in Parkinson’s disease (PD) comparative effectiveness research (CER) at academic research centers through patient advisory boards (PABs).

Background: Questions remain about the comparative effectiveness of PD treatments.¹ Patient engagement in research has the potential to improve the effectiveness of interventions and clinical outcomes. A gap in patient engagement in CER at academic research centers affiliated with a patient advocacy organization was identified.

Method: A multi-stakeholder National Collaborative was formed to merge technical expertise in PD research and patient engagement with lived experience from people with PD. Staff, people with PD, and care partners were recruited for PABs at five academic institutions. Participants were trained on CER, patient engagement and how to run a PAB, using an online training, toolkit and consulting support. A post-project survey was administered to determine the efficacy of the PAB training, quality of patient engagement in research at the PABs and impact on research at the sites.

Results: All participants (n=27) indicated patient engagement was important and all agreed that the PAB training was comprehensive. The most common patient engagement activity at PABs was setting research priorities (53%). Quality of patient engagement: The majority of PAB participants (88%) felt their feedback was prioritized, while 83% of participants were satisfied with their experiences as a PAB member. Impact of patient engagement: 35% of participants disagreed that their feedback was taken into consideration regarding decisions on how to move forward, and only 29% felt their engagement positively impacted the project.

Conclusion: This pilot offers a model for patient engagement in PD academic research centers. While results indicate there is an appetite for patient engagement in CER, there continues to be a need to work with research teams to integrate PAB perspectives into research and to ensure PABs understand how their input has been used. Future studies on patient engagement in PD CER can build on lessons learned from this pilot, and aim to expand PABs across academic research centers in the US and internationally while providing academic centers additional training on how to engage with PABs to enhance PD CER.

References: 1. Amara AW, Memon AA. Effects of Exercise on Non-motor Symptoms in Parkinson’s Disease. Clin Ther. 2018;40:8–15.
2. Forsythe LP, Carman KL, Szydlowski V et al. Patient engagement in research: early findings from the Patient-Centered Outcomes Research Institute. Health Aff (Millwood). 2019; 38(3): 359- 367.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-advisory-boards-a-model-for-patient-engagement-in-parkinsons-disease-comparative-effectiveness-research/