Utilizing patient advocates in Parkinson’s disease: A proposed framework for patient engagement and the modern metrics that can determine its success

Abstract

The wide application of patient engagement and its associated benefits has increased across government, academic and pharmaceutical research. However, neither an identified standard practice for the process of engagement, nor utilization of common metrics to assess associated outcomes, exists. Parkinson's Foundation developed a patient engagement framework and metrics to assess engagement within the academic research and drug development sectors. This approach was developed over the course of several years through assessing the literature, acquiring feedback from researchers and people with Parkinson's disease and adapting practices to be relevant and generalizable across patient engagement projects. This framework includes the: 1) creation of a scope of work, 2) establishment of guiding principles, 3) selection and training of participants, 4) co‐determination of project metrics, 5) execution of the project and 6) dissemination of project findings. Parkinson's Foundation has also worked with academic, government and pharmaceutical stakeholders to identify metrics that assess both the quality of patient engagement and outcomes associated with patient engagement on projects. By improving patient engagement project methodologies and metrics, global clinical trials can have access to evidence‐based patient engagement practices to more efficiently capture the needs of, and potentially benefit, the patient community.

Knowledge, Responsibilities, and Peer Advice From Care Partners of Patients With Parkinson Disease Psychosis

“…They express a strong desire for information and anticipatory guidance regarding PDP and indicated that they obtained most information from non-physician sources. This reinforces the important role that formal and informal social and support networks may have for individuals with neurologic disorders and their families, including support groups, patient advocacy groups, and foundations (16). Interestingly, the most common free-text peer advice category was to alert the care recipient's neurologist.…”

Patient advocates respond to ‘Utilizing Patient Advocates…’ by Feeney et al

“…Whilst we found the work described by Feeney et al 1 interesting, we nonetheless have some serious reservations and feel that the paper reflects some long‐standing biases in the medical field that have held patient engagement back.…”

“…We read with interest the recent article by Feeney and colleagues on ‘utilizing (sic) patient advocates in Parkinson's disease’ 1 . We acknowledge that sound methods for patient engagement need to be developed and evaluated.…”

23.4 Briefing

“…Feedback was provided to all parties in the research project and publicly discussed whether PPI was executed with success. This framework may serve as a model for other PPI networks to emulate, in order to standardize research practice to include and report on patient engagement 9 …”