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).
Based on The Economics of eHealth (I) and some inputs from my colleague Cristiano Codagnone I have developed my presentation to “Recent Developments and Future Challenges of Integrated Care in Europe and Northern America” – 11th International Conference on Integrated Care organised by The International Network of Integrated Care, The Julius Center of the University Medical Center Utrecht and the University of Southern Denmark (March 30 – April 1, 2011 in Odense, Denmark). I would like to thank Dr. Albert Alonso for his invitation to participate in the conference.
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”.
Although I have not posted about Pharmacists and the use of the Internet and I have not found many research on this topic, it’s clear that these health professionals are playing an important role in healthcare. Therefore, they also have a role in relationship with the Internet, specially Community Pharmacists, who are probably the most accessible health professional and are daily dealing with all kind of patients. Health promotion, Health prevention, Health Literacy, patients’ education,… are just some of the fields where Community Pharmacists can encourage patients to become more engaged in their own health care or their relatives health care.
Following our analysis of the integration of Information and Communication Technologies into medical practice and into nursing practice, we have analysed Community Pharmacists. The specific objectives were to develop and characterise a typology of CPs based on their ICT utilization and to identify factors that can enhance or inhibit the use of these technologies.
Cluster one consists of CPs whose information needs place a greater emphasis on international and national information; on activities related to professional education and information from the Pharmacists Association as well as workplace and pharmaceutical industry. This group also emphasizes ICT use for activities such as information search, communication and the dissemination of information as well as for corporate activities. This group is thus referred to as representing ‘integrated Community Pharmacist’. The label is used descriptively in order to capture the sense that for this group ICT are a mundane and valued resource. Cluster two is characterised by notably different features to the previous one. The second profile represents those CPs placing less emphasis on ICT so are consequently labelled as ‘non-integrated Community Pharmacist‘.
Statistical analysis of the relationship between these profiles revealed that ‘integrated Community Pharmacist‘ are more likely to start using Internet at an earlier stage, to consider it very useful, to use this tool on a daily basis, to have a blog and to consider Internet health information very relevant. No significance association related to age, gender or pharmacy ownership was found.
Further analysis of the relationship between the two profiles and the pharmacist-patient relationship resulted in ‘integrated Community Pharmacist‘ being more likely than ‘non-integrated Community Pharmacist‘ to recommend that patients go online to find health information and to have more patients that discuss such information during a consultation. ‘Integrated Community Pharmacist‘ are also more likely to believe that patients going online for health information improve their autonomy and their quality of life as well as improving both the health professional/patient relationship and the pharmacist/patient relationship. Finally, ‘integrated Community Pharmacist‘ are more likely to be found on the Internet searching or providing advice on professional forums. Additionally, drivers for ICT use such as improving communication with other health care professionals and improvement in work productivity are likely to have a higher impact on ‘integrated Community Pharmacist‘ while barriers such as lack of training or lack of time are less likely to challenge them.
It was observed that factors related with ‘intensive use of Internet’ (every day), ‘emphasis on Internet for communication and dissemination’ as well as information needs from the Pharmacists Professional Association play a positive and significant role in the probability of being an ‘integrated Community Pharmacist‘. Recommending patients going on-line for health information and discussing or sharing patients’ Internet health information findings also have a positive and significant role.
The research reported is part of a broad study supported by Departament de Salut de la Generalitat de Catalunya (Catalonia Health Department) and directed by Prof. Manuel Castells. Survey launched is a result of collaboration between the Internet Interdisciplinary Institute at Open University of Catalonia and the Pharmacist Association of Barcelona (Col.legi Oficial de Farmacèutics de Barcelona).
We are planning to launch again our survey to Physicians, Nurses and Pharmacists with the collaboration of their Professional Associations of Barcelona. Therefore, we are redesigning the questionnaires and checking our multivariate analysis. Following the published paper entitled “The integration of Information and Communication Technology into medical practice”, we have send to a peer-review journal another paper focused on Nurses. Below you can find the main figures:
Table 5 revealed that cluster one (4.58%) is composed of those nurses who make greater use of ICT and the Internet for access to clinical and scientific information. The nurses within this cluster are also more likely to use ICT as a resource for publishing and international contact on national and international information. This first profile represents those nurses who place high emphasis on ICT in that it forms an integral part of their practice. This group is thus referred to as representing ‘Integrated nurses’. In other words, ICT and the Internet has become an important tool to be used in the delivery of care for the ‘integrated nurse’.
Cluster two (95.42%) is characterised by a distinctive set of features. The second profile represents those nurses who place less emphasis on ICT so that it is used to support their daily work only when required. This group are consequently labelled ‘Non-integrated nurses’.
Statistical analysis of the relationship between the two profiles (see Table 6 of the presentation) revealed that ‘Integrated nurses’ are more likely than ‘Non-integrated nurses’ to carry out research activities, to consider the Internet is ‘very useful’ to their nursing practice and to recommend that their patients use online health information. ‘Non-integrated nurses’ are more likely than ‘integrated nurses’ to be only engaged in delivering nursing care and to believe that patients use of online information will have little impact on their treatment their or understanding of their condition.
Finally, it was found that all the variables included have a significance explanatory power regarding the integration of ICT within nursing practice (see Table 7). It was observed that an ‘emphasis on international information’, performance ‘research activities’ and ‘the perception that health information available on the Internet’ was relevant to nursing played a positive and significance role in the probability of being an ‘Integrated nurse’.
The research reported is part of a broad study supported by Departament de Salut de la Generalitat de Catalunya (Catalonia Health Department) and directed by Prof. Manuel Castells. Survey launched is a result of a collaboration between the Internet Interdisciplinary Institute at Open University of Catalonia and the Nurses Association of Barcelona (Col·legi Oficial de Infermeres de Barcelona).
Lately, I have been checking and reading some scientific papers about health communication from:
- Journal of Health Communication: International Perspectives
- Health Communication
- Patients Education and Counselling
The aim is to write a paper based on the presentation done with Michael Hardey:
The purpose of this paper is to identify how health professionals view public use of the Internet and whether new forms of communication are emerging with the following objectives:
- To identify the utilisation, experience, expertise, barriers and expectations that doctors, nurses and community pharmacists have with the Internet and the email.
- To identify the experience and expectations that doctors, nurses and community pharmacists have with patients using the Internet.
- To identify factors that can enhance the integration of the recommendation of health information available on the Internet and the email within the health professional / patients relationship.
Any reference, suggestion, recommendation… about the presentation will be appreciated.
On 26th October I have the opportunity to act as a moderator in a symposium called Communication in health 2.0, organized by the Institute for Continuing Education (IDEC) and the University of Pompeu Fabra’s Science Communication Observatory (OCC). First of all, I would like to thank Vladimir de Semir, Gemma Revuelta and Clara Armengou for their invitation and their organization of the symposuum. I really think that University has a role as a hub to disseminate and research about this topic in collaboration with the rest of the actors (industry, healthcare providers, professionals, Government,…).
Act as a moderator gave me the opportunity to work on the Health Communication field as a framework of part of the research I have been doing and develop the first step towards the conceptualization of Health Mass-Self Communication.
Yesterday I had the pleasure to attend the defence of Ismael Peña‘ thesis Measuring digital development for policy-making: models, stages, characteristics and causes, “which deals about the digital economy and whether governments should help in its development for it might have a positive impact on the real economy and on the society at large”.
Dissertation supervisor: Tim Kelly
Composition of the committee:
President: Tim Unwin (University of London)
Secretary: Joan Torrent Sellens (UOC)
Members: Robin Mansell (London School of Economics)
Bruno Lanvin (INSEAD)
Laura Sartori (Università di Bologna)
Gustavo Cardoso (Instituto Superior de Ciências do Trabalho e da Empresa)
Rosa Borge Bravo (UOC)
CONGRATULATIONS Dr. Peña-López. I’m proud to work with you in the same research group I2TIC.