Privacy preferences for healthcare records and information across Europe

Features

  • Author: Catherine Saunders and Sunil Patil
  • Date: 10 May 2016
  • Copyright: Image appears courtesy of Getty Images

From what you hear and read in the news, you might get the impression that the public do not want their personal information, especially healthcare records, to be shared under any circumstances. However, this perception has been challenged following the European Commission’s three year PACT project, a Europe-wide survey, which used a stated preference (SP) experiment exploring Europeans’ views on security, surveillance and privacy issues.

SP experiments have been used extensively in the fields of marketing, transport economics, environmental valuation, and health and healthcare. Respondents are asked to indicate the most preferred alternative for them in a series of hypothetical choice scenarios. In the PACT project, this involved choosing between devices, such as fitness bands, with different costs, and with different options for storage of, access to, and sharing of health information.

thumbnail image: Privacy preferences for healthcare records and information across Europe

Compared with opinion polls or traditional survey approaches, SP experiments provide a more nuanced insight into preferences, and the factors, or attributes that may influence decision making. Analysis of preferences from all respondents allows the estimation of relative preferences for each attribute and the values they take.

RAND Europe’s contribution to the PACT project involved designing a survey for over 26,000 people from the EU member states (27 at the time), of which 18,900 provided more than 94,000 choice observations relating to their expectations of health records storage. From this large survey, came a series of general observations about what the public think about the storage of healthcare data and who can access it.

The research found that, when given the choice, respondents across Europe preferred to store more, rather than less, electronic health information and that access to this information by all health professionals, rather than just doctors and nurses, is preferred.

The majority of European respondents preferred additional medical information, such as lifelong medical conditions, to be stored alongside a basic health status. However, there was broad agreement that additional information should be restricted to health and medical history only, with respondents being averse to further personal information being stored.

There was also broad agreement regarding wider access to healthcare records, but, again, there were restrictions. Respondents were open to paramedics and fire and rescue personnel having access to their health and medical records, but the anonymised sharing of electronic health data with academic researchers for research purposes only was not preferred. Respondents were also averse to the sharing of their health information with other third parties, namely insurance providers and pharmaceutical companies.

Compared to limiting access just in the country of residence, access to electronic records from across Europe was broadly preferred, although access worldwide was not. This finding was broadly consistent across most European countries; however, there was some diversity in preferences. For example, respondents in Austria, Slovakia and Czech Republic disliked the notion of EU-wide access to health records.

Respondents were open to paramedics and fire and rescue personnel having access to their health and medical records, but the anonymised sharing of electronic health data with academic researchers for research purposes only was not preferred. Respondents were also averse to the sharing of their health information with other third parties, namely insurance providers and pharmaceutical companies.

So, overall what did the research show us? The overwhelming conclusion is that the general public has a more nuanced preference for the privacy of electronic health records than previously thought.

The perceived notion that the public is completely reluctant to share personal information is largely false. Through SP, the study managed to tease out from respondents that they would not be averse to individuals involved in the health and rescue professions having access to their basic health information, with a stated preference for further information in relation to long-term health conditions being stored.

There are still limitations to preferences regarding storage and access of healthcare data, but it is clear that the extreme barriers and fears of data access often described in public debate are not evident. The study should act as a positive first step towards developing a quantitative evidence base required for policy-making across the EU and in the individual member states.

Catherine Saunders is an Analyst and Sunil Patil is a Senior Analyst at RAND Europe.

References

Patil S, Lu H, Saunders CL, Potoglou D, Robinson N. (2016) Public preferences for electronic health data storage, access and sharing - Evidence from a pan-European study. J Am Med Inform Assoc DOI: http://dx.doi.org/10.1093/jamia/ocw012

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