Category Archives: Law & Rights

Enhanced data gathering through active collaboration with Healthcare Actors

Citizens and ICT for Health in 14 EU countries: results from an online panel survey

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:


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).

Inverse Care Law 2.0

I have posted several times about the “inverse care law” and eHealth. Following some conversations with @drbonis and @rcofinof I have decided to entitle this post “Inverse Care Law 2.0″ to embed my presentation (Spanish) at “V Jornada de debate sobre eficacia y seguridad en la utilización de medicamentos”.

Cord blood banking: initial observations – Laura Machin

“Innovative health technologies: health systems in transition Workshop”

Supported by: Internet Interdisciplinary Institute (IN3)

Organized by: Francisco Lupiáñez-Villanueva (Internet Interdisciplinary Institute –UOC) and Michael Hardey (Hull/York Medical School – Science and Technology Studies Unit, Department of Sociology, University of York)

Data: 26th and 27th November

Place: UOC IN3 building. Av. Canal Olímpic, s/n. Edifici B3, 08860 Castelldefels (Barcelona)

Laura Machin’s presentation – Cord blood banking: initial observations

In recent years, the collection and storage of biological resources and data has commanded considerable attention in public policy debate and amongst social scientists interested in potentially new forms of regulatory, ethical and political economy. Much of this attention has focused upon public sector initiatives, such as UK Biobank and the UK Stem Cell Bank, but those less well researched are the emerging forms of commercial and private banking. In particular, are cord blood stem cell banks offering parents the possibility of paying to deposit cord blood stem cells taken at birth. Alongside commercial banks is the public sector banking, which emerged after the first cord blood stem cell transplant in 1988. Both instances raise questions around new forms of consumption, parental responsibility and the changing balances between public and commercial bioscience. In this presentation, I will introduce the aims and objectives of this 2-year project, titled ‘the political and moral economy of cord blood banking’, funded by the Economic and Social Research Council. I will also discuss cord blood banking in its current context and present some initial observations from the data collected during the past 10 months.

Laura Machin

Researcher at Science and Technology Studies Unit (SATSU), University of York. Currently working on the umbilical cord blood banking project and the social and ethical context of embryo donation (to other couples for fertility treatment or stem cell research). Generally, I am interested in the social, ethical, historical aspects of assisted conception techniques – specifically, the roles/notions of the patient/consumer/patient groups, the relationships between and within professions (sociology of professions / boundary-work) and the evolving notion of the family (sociology of the family). I am also keen to develop my policy interests in childbirth and maternity services, and infertility counselling.

Internet, Sex and "Men who have sex with men" Workshop

Today, I have been invited by StopSida to participate in a workshop about “Internet, Sex and Men who have sex with men“. Here goes my presentation (in Spanish) which tries to show an overview about the Internet, Citizens and Health: challenges and opportunities.

Finally, I would like to share my presentation and also to thank Katy and Percy for the wonderful organization of the event that allows us to think and learn about prevention and public health and the roles of NGO, Government and Private sector (as on these issues. Due to the dynamic of the workshop the debate was very interestig, I wil try to translate to English some of my notes and also some of the participants’ interventions.


Today I have received an email telling me “natldialogue (natldialogue) is now following your updates on Twitter”. Obviously, I check the link; its bio description states “How should we protect personal privacy and expand the use of information technology to improve health care?” and its link that points me to A National Dialogue On HEALTH INFORMATION TECHNOLOGY AND PRIVACY.

The dialogue is launched by this question “How should we expand the use of information technology and protect personal privacy to improve health care?” and encourage people to submit ideas or concerns, write questions or comments, share stories or vote ideas from other people. Furthermore, the website provides expert information about the issue

Twitter is just used to follow conversation, but this web also provides a opinion tracker to show what people are thinking and saying about how information technology can be used to improve healthcare while safeguarding privacy.

I must keep an eye on this initiative as a clear and intereting case study to be analysed.

Society, Health and the Internet references

This post will be for sure my longest post ever. I would like to share my thesis’s references. You could also find them at my personal references manager. Enjoy them!


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Open Government Policies

Ethan Zuckerman, fellow of the Berkman Center for Interent and Society at Harvard Law School, is posting about Open Government Principles workshop at O’Reilly and Associates:

The aim of this meeting was to draft a set of principles to define what constitutes open government data:

Government data shall be considered open if it is made public in a way that complies with the principles below:

1. Complete
All public data is made available. Public data is data that is not subject to valid privacy, security or privilege limitations.

2. Primary
Data is as collected at the source, with the highest possible level of granularity, not in aggregate or modified forms.

3. Timely
Data is made available as quickly as necessary to preserve the value of the data.

4. Accessible
Data is available to the widest range of users for the widest range of purposes.

5. Machine processable
Data is reasonably structured to allow automated processing.

6. Non-discriminatory
Data is available to anyone, with no requirement of registration.

7. Non-proprietary
Data is available in a format over which no entity has exclusive control.

8. License-free
Data is not subject to any copyright, patent, trademark or trade secret regulation. Reasonable privacy, security and privilege restrictions may be allowed.

Compliance must be reviewable.

Public Sector Information in the Network Society, as well as Web 2.o phenomenon, may take into account the Open Access Movement.