choices on selective clinical data sharing by people with parkinson’s disease

Leah R Mursaleen,1,2 Jon A Stamford,1,2 Peter Schmidt,3 John M Dean,4 Richard Windle,2 David A Jones,2 Helen Matthews1,2 1The Cure Parkinson’s Trust, London, UK; 2Parkinson’s Movement, London, UK; 3National Parkinson Foundation, Parkinson’s Foundation, Miami, FL, USA; 4Davis Phinney Foundation, Boulder, CO, USA Background: Clinical data sharing and ownership are key issues in modern digital data acquisition. Data sharing is subject to influence by a range of stakeholders. Of these, patient attitudes are pivotal. Objectives: The objective of this report was to characterize attitudes to clinical data sharing among people with Parkinson’s disease (PD). Methods: A recent survey, conducted by the Parkinson’s Movement (2016) highlighted patient concerns over data sharing. This formed the basis for discussion by two focus groups at the Rallying to the Challenge meeting at the Van Andel Research Institute in September 2016. Results: The focus groups examined issues related to the appropriateness of data sharing for different categories of data and highlighted both the value and concerns regarding data sharing. Conclusion: At the conclusion of the session, it was proposed that a “data charter” be developed to reflect the thinking of people with PD on best practices in data acquisition, ownership, and sharing. Keywords: Parkinson’s disease, patient choice, data sharing, data acquisition, data ownership, best practices, data charter