Health-related Information as Personal Data in Europe: Results from a Representative Survey in Eu27

On behalf of my co-authors, Wainer Lusoli, Margherita Bacigalupo, Ioannis Maghiros, Norberto Andrade, and Cristiano Codagnone from Information Society Unit – European Commission, DG JRC Institute for Prospective Technological Studies (IPTS), Seville, Spain, I’m presenting “Health-related Information as Personal Data in Europe: Results from a Representative Survey in EU27” at Medicine 2.0’11 (Stanford University, USA).

Abstract published at Medicine 2.0 website here:

ABSTRACT

Emerging technological and societal developments have brought new challenges for the protection of personal data and individuals’ rights. The widespread adoption of social networking, participation, apomediation, openness and collaboration stretches even further the concepts of confidentiality, privacy, ethics and legality; it also emphasizes the importance of electronic identity and data protection in the health field.

Governments across the Atlantic have adopted legal instruments to defend personal data and individuals’ rights, such as the Health Information Portability and Accountability Act (1996) in USA, the Recommendation No. R(97)5 on the Protection of Medical Data issued by the Council of Europe (1997) in addition to specific legislation adopted by each EU Member State as part of the Data protection Directive 48/95 transposition process. These reflect policy makers’ concerns about the need to safeguard medical and health-related information. On the other hand, bottom up developments such as the widespread usage of “PatientLikeMe” and the availability of industry based platforms for user-owned electronic medical records (i.e. Google Health or Microsoft Health Vault) are often pointed at, arguing that users do not really care about data protection as long as sharing such data produces more value than it destroys. There is, however, a clear evidence gap as to the attitudes of Europeans with respect to this issue.

The purpose of this paper is to identify and characterize individuals’ perception, behaviors and attitudes towards health-related information and health institutions regarding electronic identity and data protection. The research is based on Eurobarometer 359 “The State of Electronic Identity and Data Protection in Europe”, a representative sample of people in EU27 conducted in December 2010. The survey was conducted in each 27 EU Member States via a national random-stratified samples of ~ 1,000 interviews; overall, 26,574 Europeans aged 15 and over were interviewed face-to-face in their homes. The questionnaire asked questions about data disclosure in different context, including health. Specifically, it included questions related to health and personal information, disclosure in Social Networking Sites and on eCommerce sites, trust in health institutions, approval required for disclosure and sensitivity of DNA data. Specifically, we will provide an encompassing portrait of people’s perceptions, behaviors and attitudes across EU27, we will examine the influence of socio-demographic traits and Internet use on such attitudes and behaviors. We will explore significant differences across major regional block. Finally, we will present results from factor analysis that aimed to identify commonalities between variables, and from cluster analysis, use to create typologies of individuals concerning health-related behaviors. Empirical analysis allows to broaden and deepen understanding of the consequences of data protection in Medicine 2.0. Our data also call for further, joint research on this issue, which links demand and supply of medical and health-related data. Indeed, not all people need or want the same level of detail: researchers and physicians clearly need to access more while end users or insurance companies can live with less information. This is one of the crucial points regarding the revision of the Data Protection Directive in Europe (Directive 95/46).