Attitudes Towards Data Collection, Ownership and Sharing Among Patients with Parkinson's Disease

J Parkinsons Dis. 2017;7(3):523-531. doi: 10.3233/JPD-161045.


Background: The ownership and sharing of patient medical data is an increasingly contentious subject in medicine generally but also within the field of Parkinson's disease (PD). Despite being the providers of the medical data, patients are rarely consulted as to its usage.

Objective: The objective of this paper is to establish patient attitudes to ownership of their own medical data and the sharing thereof.

Methods: We report here the results of an online survey of people with Parkinson's. A total of 310 people took part in the 'sharing data' component of the survey, answering some or all of the questions for which they were eligible.

Results: Most respondents (208/306) were aged between 55 and 74 years. 55% of the sample were female and the mean number of years diagnosed was 7.1. Although 93% of respondents were willing to share data, only 41% were currently doing so and a further 8% did not know whether they were sharing any information in this way. There was a significant association between age and data sharing (p = 0.006). However, no clear relationship was found between data sharing and the number of years diagnosed, sex, medication class or health confidence. There was also no consensus among patients on ownership of, access to and usage of their research data.

Conclusion: The lack of consensus on data ownership and general absence of clear demographic predictors of data sharing implies impaired communication pathways. We suggest that strategies directed towards improved communication may help to clarify data ownership and promote data sharing.

Keywords: Parkinson’s disease; anonymity; communication; data collection; data ownership; data sharing.

MeSH terms

  • Aged
  • Female
  • Health Knowledge, Attitudes, Practice*
  • Health Records, Personal*
  • Humans
  • Information Dissemination*
  • Male
  • Middle Aged
  • Ownership
  • Parkinson Disease* / psychology
  • Surveys and Questionnaires