Open AccessUtilizing patient advocates in Parkinson’s disease: A proposed framework for patient engagement and the modern metrics that can determine its success
Author(s) -
Feeney Megan,
Evers Christiana,
Agpalo Danielle,
Cone Lisa,
Fleisher Jori,
Schroeder Karlin
Publication year - 2020
Publication title -
health expectations
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.314
H-Index - 74
eISSN - 1369-7625
pISSN - 1369-6513
DOI - 10.1111/hex.13064
Subject(s) - government (linguistics) , foundation (evidence) , process (computing) , public engagement , community engagement , scope (computer science) , medical education , knowledge management , psychology , best practice , process management , medicine , public relations , computer science , business , political science , philosophy , linguistics , law , programming language , operating system
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.