Objective: To compare and contrast the attitudes and perceived impact of patient engagement on Parkinson’s research among patients, researchers and study sponsors in the UK and US. 

Background: There is growing evidence that the relevance and quality of health services and clinical research is enhanced when patients partner with scientists in study design, implementation, management and results dissemination. Funders, ethics committees and regulators are increasingly asking for evidence of patient and public involvement.  Scientific journals are beginning to ask researchers to report on patient engagement when publishing. Parkinson’s is a complex disease with many domains including physical, emotional, social and cognitive. Because of this, it is imperative that the Parkinson’s research community work alongside patients and carers to ensure the best quality and most relevant research is conducted. Parkinson’s UK and the Parkinson’s Disease Foundation, a division of the Parkinson’s Foundation, have lead initiatives to facilitate partnerships among patients and researchers. These programmes have trained and supported 280 patient advocates in the US and over 100 patient volunteers in the UK. The programmes also provide consultation and support to researchers who wish to collaborate with patients. To date, there has been no comparative analysis of attitudes toward and impact of patient engagement among Parkinson’s programs based in two separate countries with organizational and systematic similarities and differences. 

Methods: An online survey will be administered to assess attitudes and perceived impact of patient engagement among: 1. PDF (US) and Parkinson UK volunteers engaged in research advocacy; 2. US and UK academic researchers who have partnered with patients; and 3. US and UK industry sponsors who have partnered with patients. 

Results: Analysis of the online survey results will be conducted to identify differences in the attitudes and perceived impact of public engagement in the groups identified.

Conclusions: Findings from non-comparative organizational surveys indicate that patients, academic researchers and industry sponsors have different attitudes and perceptions of impact of public engagement in Parkinson’s. This survey aims to identify and quantify these differences so as to develop more effective patient engagement mechanisms.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-engagement-in-parkinsons-research-a-comparison-of-attitudes-and-impact-in-the-uk-and-the-us/