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

The views expressed in this presentation are those of the author and do not (necessarily) reflect the position of the European Commission. Neither the Commission nor any person acting on behalf of the Commission can be hold responsible for the use which is made of this presentation Francisco Lupiáñez-Villanueva, Wainer Lusoli, Margherita Bacigalupo, Ioannis Maghiros, Norberto Andrade, Cristiano Codagnone Information Society Unit - European Commission, Institute for Prospective Technological Studies (IPTS), Seville, Spain Health-related Information as Personal Data in Europe: Results from a Representative Survey in EU-27 Medicine 2.0'11 (Stanford University, USA)

Institute for Prospective Technological Studies Francisco Lupiáñez-Villanueva, PhD http://www.ictconsequences.net Information Society Unit European Commission, JRC Institute for Prospective Technological Studies (IPTS) Edificio Expo - Calle Inca Garcilaso, s/n E-41092 Seville - Spain http://ipts.jrc.ec.europa.eu [email_address] Phone +34 954 488 206 (direct) Fax +34 954 488 208 IPTS : Part of Joint Research Centre (JRC) of the EC: 7 Research Institutes across EU As a service of the European Commission, the mission is to provide customer-driven scientific and technical support for the conception, development, implementation and monitoring of EU policies. JRC functions as a reference centre of science and technology for the Union. It serves the common interest of the Member States, while being independent of special interests, whether private or national.

Background
Objective
To identify and characterize individuals' perception, behaviours and attitudes towards health-related information and health institutions regarding electronic identity and data protection. The research is based on Eurobarometer Survey 359 "The State of Electronic Identity and Data Protection in Europe“ of a representative sample of people in EU27 (national random-stratified samples) conducted in December 2010 and published in June 2011. Methods
The questionnaire tackled issues related with data disclosure in different context, including:
health and personal information,
disclosure in Social Networking Sites and on eCommerce sites
trust, concerns, risks
approval required for disclosure and sensitivity of DNA data
27 EU Member States ~ 1,000 face to face interviews 26,574 Europeans aged 15 and over

Legal background Data Protection Directive (95/46/EC) general EU law in the field of protection of personal data and the most prominent legislative act regulating the processing of medical data Recommendation R(97)5 Protection of Medical Data (Feb. 13, 1997) explicitly defines the expression “medical data” and the expression “genetic data” Directive on Patients’ Rights in Cross-Border Healthcare : on the application of patients’ rights in cross-border healthcare. Digital Agenda for Europe: strategy for a flourishing digital economy 2020 Key Action 13: secure online access to their medical health data widespread deployment of telemedicine Key Action 14: minimum common set of patient data for interoperability of patient

Medical information as personal data
74% of Europeans consider medical information as patient record, health information as personal
Sensitive information Factor analysis

Medical information as personal data – Sensitive information
Medical information as sensitive information

Medical information socio-demographics traits Female (75%) Middle-age 25-39 and 40-54 (75%, 76%), Higher level of formal educatio n (81%), Manager (83%) or other white collar (78%), Affluent (almost never / never difficulties to pay bills (76%) Internet users (78%) are more likely to consider medical information to be personal These results point to a significant disparity in the perception on one’s own health, as people from poorer backgrounds may be less protective of their medical data privacy than wealthier Europeans.

Medical information as personal – Country profile A large majority of European interviewees see medical information as personal. But respondents located in the north and west of the European Union (77% - 100%) are most likely to regard medical information as personal.

Specific approval should be required before any kind of personal information is collected and processed.
74% approval should be required in all cases
12% in the case of personal information collected on the Internet
8% in the case of sensitive information (health, religion, political beliefs or sexual preferences).
Individuals who stated that specific approval should be required in all cases are more likely to consider medical information as personal (76%) than individuals who do not consider this type of information as personal (24%).
Management of personal data by other parties

Trust in institution and companies Individuals who considered medical information as personal are:
more likely to trust:
health and medical institutions (86%-74%)
national public authorities (73%-68%);
banks and financial institutions (66% vs. 59%)
less likely to trust:
shops and department stores (62%-44%);
Internet companies
(73%-49%),
Phone companies
(68%-62%)

Management of personal data by other parties, trust and concern Medical information as personal data

Individuals who consider medical information as personal:
Concern - are slightly more likely to be concerned (74% vs. 66%) .
Awareness - are more likely to have heard about experienced issues related to data loss and identity theft through
Media awareness television, radio, newspapers, the Internet ( 45% vs. 32% ).
Social awareness and self-family experience no statistically significant.
Protection - are more likely to:
have heard about a public authority in their countries responsible for protecting their rights (36% vs.28%).
state that they would want to be informed by a public authority or by a private company (91% vs. 78%)
to have the same rights and protections regardless of the EU country in which it is collected and processed (79% vs. 57%).
Concern, awareness and protection

About a third of all Europeans use SNS and/or websites to share pictures, videos.. Over half of all internet users (52%) use a social networking site and more than four in ten (44%) use websites to share pictures, videos, movies , etc. Socio-demographic characteristics that influence social networking and sharing sites are age, education, occupation, financial situation, household composition and frequency of Internet use.  DIGITAL DIVIDES - younger age cohorts (15-24 and 25-39) are more likely than the older age cohorts (40-55 and 55+) to undertake both activities. - Internet users with higher educated are more likely to engage in these activities - Interviewees who use the Internet every day undertake both activities more often than average Medical information & Web 2.0

The respondents who use SNS and sharing sites were then asked which types of personal information they disclosed in these environments . Medical information disclosure & Social Computing

Perception & Behaviours Medical information as personal PERCEPTION YES NO Medical information disclosure BEHAVIOUR YES NO Self-revealing 5% Only 5% disclose medical information on SNS and sharing sites 3% of Internet users disclosed medical information in the context of eCommerce

Characterisation medical information perception and behaviours Self- revealing users are more likely to be older; to have ended education at the age of 16-19; to live in a house with three persons; not to have difficulties to pay their bills; and be heavy Internet users at home. Cautious users are slightly more likely to be female; to be 15-24 or 55+; to be students or manual workers; to end education at the age of 16-19 or 20; to live in a house with 4+ (34%); not to have difficulties to pay their bills; and to be heavy Internet users at home and at work. Indifferent users are slightly more likely to be male; to be 15-24; to be student; end education at 20+; not to have difficulties to pay their bills; and to be heavy Internet users at home and at work.

User generating & seeking health information The absence of patterns indicates the lack of network effect in the number of users generating medical information content and the number of users seeking health information on the Internet Cautious – 73% Indifferent – 22% Self-revealing – 5%

Reasons to disclose personal data
Self-revealing individuals appear to disclose (in general), for pragmatic reasons:
to get a service for free ;
to save time at the next visit;
to benefit from personalised commercial offers
to receive money or price reduction .
Self-revealing individuals are behaving consistently for all types of data

Risks
Perceive reputation damage
Fear misunderstanding of their views and behaviours
Self-revealing individuals are more likely to :

Informed consent & responsibility Self-revealing users are more likely to consider that SNS sufficiently inform their users about the possible consequences of disclosing personal information (65% vs 47% cautious and 61% indifferent). Attribution of responsibility appears stable regardless of disclosure and perception of medical information

Trust National public authorities and European institutions are considered as the most trusted institutions by Self-revealing individuals. Even though the level of trust is lower, self-revealing individuals are more likely to trust shops and department stores (55%) and Phone companies (49%) and Internet companies (45%) than cautious and indifferent .

Approval and concern regarding re-use of personal data Self-revealing users are: less likely to consider that specific approval is required before personal information is collected and processed . more likely to be concerned about the re-use of personal data for different purposes (75% self-revealing – 70% cautious – 66% indifferent). BUT, in the context of personal information asked on the Internet these individuals are more likely to require specific approval.

Control, data deletion & portability Perception of control does not vary significantly whether user disclosed or not medical information. Indifferent individuals are slightly more likely to feel they have control over the information than cautious users. Data deletion, self-revealing individuals are more likely to want to have the possibility to delete personal data when they change Internet provider (23% self-revealing vs. 11% indifferent) Data portability , self-revealing individuals are more likely to consider it important (84% vs. 75% cautious individuals & indifferent individuals (80%)

Control: deletion of personal data and portability Medical information & Social Computing

Awareness, identity theft, regulation
Self-revealing individuals are more likely to be aware of identity theft
Through:
word of mouth and/or acquaintances (social awareness)
a member of their family and/or themselves.
Cautious individuals are slightly more likely to want to be informed (94%) than self-revealing and indifferent individuals (both 90%).
More than 95% of the individuals consider having the same data protection right across Europe important.

Genetic data Seven out of ten Europeans stated that special protection is needed in the case of genetic data. However, self-revealing individuals are less likely to consider that this special protection is needed definitely (55%) than cautious (75%) and indifferent (60%) individuals. In essence this is evidence that self-revealing individuals are not likely to be revealing genetic information while sharing information over Social networks.

Conclusions – Medical data as personal
About 3/4 of Europeans perceive medical information such as patient records and health information to be personal.
Considering medical data as personal makes a large difference to a range of regulatory preferences:
Trust in public institutions significantly reduces the worry of those who care about their medical data. And trust in shops, Internet companies and phone companies is extremely important, as it is associated with significantly lower concerns across the sample, for both people who consider medical data as personal and otherwise.
more likely to want to be informed and to desire the same protection regardless of the EU country in which it is collected and processed
more likely to be concerned about stealth re-use of their personal, regardless of whether they trust or not data controllers.

Medical information & Web 2.0
Although a majority of people consider that medical information is personal, still a small percentage do disclose it eCommerce (3%) and Social networking and sharing sites (5%).
Relationship between perception and behaviour reveals three different profiles ( Self-revealing 5%, Indifferent 22% and Cautious 73%)
Self-revealing individuals are aware of the risks involved and still they do disclose with different attitudes towards c ontrol, trust, concerns, and responsibility. Therefore, they are getting benefit from the disclosure or are obliged to do it.

Medical information & Web 2.0
Socio-economic characterization points to a significant disparity, as people from poorer backgrounds may be less protective of their medical data privacy than wealthier Europeans
Self-revealing individuals are more likely to be older, since older individuals are more likely to either face a health problem themselves or care for someone else in the family.
Although due to age self-revealing users are also less educated than cautious or indifferent individuals, their overall high education could make the risk of health illiteracy minimal
Cautious users are slightly more likely to be female (51% vs. 49%) while indifferent individuals are more likely to be male (56% vs. 44%); this characteristic points out the importance of women in relation to health issues .
(Digital divides – Empowerment – Inverse care law 2.0.)

Thank you very much for your attention @flupianez http://www.ictconsequences.net Francisco Lupiáñez-Villanueva, PhD http://www.ictconsequences.net Information Society Unit European Commission, JRC Institute for Prospective Technological Studies (IPTS) Edificio Expo - Calle Inca Garcilaso, s/n E-41092 Seville - Spain http://ipts.jrc.ec.europa.eu [email_address]

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

by Francisco Lupiáñez-Villanueva on Sep 18, 2011

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