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Internet Inequalities & Health in Australia: Research, Policy and Service Challenges

The subtitle of this post should be Why research blogging matters! The story started on  November 9th, 2011, as a result of my exploratory research  I posted Social determinants of Health and ICT for Health (eHealth) conceptual framework. This post was followed by several comments with substantial contributions specially by Susannah Fox (@SusannahFox) and her wonderful, inspiring and transparent research at PEW Research Center and by Lareen Newman from Flinders University of South Australia.

It was a pleasure to have Susannah summary on my blog but I must confess that I didn’t know Lareen Newman works (my fault). Nevertheless, after her comment we started a fruitful conversation by email. As result of this conversation and due to her visit to Europe I will have the pleasure to meet Lareen face to face in Barcelona. Moreover, Lareen will give a seminar entitled entitled Internet Inequalities & Health in Australia: Research, Policy and Service Challenges organised by my research institute (Internet Interdiciplinary Institute - IN3).

I want to reproduce here the abstract and invite you to attend to the seminar

Internet Inequalities & Health in Australia: Research, Policy and Service Challenges
Dr Lareen Newman, Flinders University; Adelaide, Australia

Australian governments and health organisations are increasingly using digital technologies to communicate with the public, with increasing amounts of online information, iApps, and web-based self-management. These changes are being strongly encouraged by policies such as Australia’s National Digital Economy Strategy (Department of Broadband, Communications & The Digital Economy 2011) and National E-Health Strategy (Australian Health Ministers’ Advisory Council 2008). These aim to increase digital communication with the public in order to reduce government costs and to improve public access. The Internet and new National Broadband Network are seen as particularly attractive opportunities to improve access to services over the vast distances experienced by Australians living in rural and remote areas. However, these national strategies overlook the fact that there is a social gradient in access to technologies such as the Internet, mobile phones and Smartphones. The literacy levels of Australian adults may also be a key barrier to online participation which is not addressed by the standard government remedies of ICT training courses and new infrastructure roll-outs.

This presentation will first provide an overview of Internet inequalities across the Australian population, drawing on national Census and survey data. It will then present findings from empirical qualitative research in Australia with a range of lower-income and disadvantaged groups, older non-English speaking migrants, and young people with disabilities. This research has found that Internet and mobile phone access and use are underpinned by a complexity of socioeconomic inequalities and social determinants of health (eg education, income, employment and social connections). The presentation will identify implications of these complexities for service access and equity. It will discuss the need to go beyond the Digital Divide to consider social processes of Digital Exclusion, and the extent to which exclusion may be inadvertently precipitated by government. Finally it will introduce the concept of a Digital Equity Impact Assessment Tool which is being developed to enable services and policymakers to assess the equity effects of introducing digital communication and to develop mitigating strategies to maximise digital access.

IMPORTANT: Registration by sending an email to Montse Mir (mmirb@uoc.edu).

Where: MEDIATIC Building, 7th. floor, William J. Mitchell Hall, Roc Boronat street, 117, 08018
When: Monday, 12 November 2012 (10:00 - 11:30)

Citizens and ICT for Health - eHealth steps

Based on the online survey Citizens and ICT for Health in 14 European countries (14000 Internet users were surveyed) and supported by Social determinants of Health and ICT for Health (eHealth) conceptual framework, therefore based on the results of empirical research, I have tried to summaries the lessons learned in the following eHealth steps.

Citizens and ICT for Health - eHealth steps

Citizens and ICT for Health in 14 EU countries: results from an online panel survey (full draft report)

Citizens and ICT for Health in 14 EU countries: results from an online panel surveySUMMARY
Full draft report
Ppt presentation

I.    Background
The Citizen Panel Survey carried out in SIMPHS2 to better assess users and patients’ needs and expectations with regard to ICT for health, directly supports the objectives of the Digital Agenda in the area of eHealth which are to both cope with societal challenges and create opportunities for innovation and economic growth by reducing health inequalities, promoting active and healthy ageing and increasing empowerment. It also contributes to the goals of the European Innovation Partnership on Active and Healthy Aging which addresses the societal challenge of an ageing population focusing on the main areas of life events (Prevention, Care and cure and Independent living) with the following expected results:

  • An improvement of the health status and quality of life of Europeans, especially older people;
  • An improvement of the sustainability and efficiency of health and social care systems;
  • Boosted EU competitiveness through an improved business environment for innovation

In this policy context the analysis of users’ demand undertaken through the SIMPHS2 Citizen panel survey aims to:

  • develop typologies of digital healthcare users and measure the impact of ICT and the Internet on health status, health care demand and health management.
  • identify factors that can enhance or inhibit the role and use of Personal Health Systems from a citizen’ s perspective with special emphasis on mHealth, RMT, disease management, Telecare, Telemedicine and Wellness.

To reach these objectives, we started by defining a theoretical framework for policy-making, which was used to design and gather relevant information. A multivariate statistical analysis was subsequently carried out to identify the underlying conceptual dimensions emerging from the data collected. Key relationships between concepts (underlying dimensions) were identified to understand ICT for Health as a complex ecosystem. We concluded with some lessons learned.

II.    Conceptual framework: Towards social determinants of ICT for Health

Two frameworks are at the root of our own conceptual framework “Towards social determinants of ICT for Health”. One is the WHO Commission on Social Determinants of Health Framework which summarises how “social, economic and political mechanisms give rise to a set of socioeconomic positions, whereby populations are stratified according to income, education, occupation, gender, race/ethnicity and other factors; these socioeconomic positions in turn shape specific determinants of health status (intermediary determinants) reflective of people’s place within social hierarchies; based on their respective social status, individuals experience differences in exposure and vulnerability to health-compromising conditions”. While this framework does not relate directly to ICT for Health, the structural determinants perfectly overlap the core argument of personal and positional categories of and distribution of resources in van Dijk’s “Causal and Sequential Model of Digital Technology Access by individuals in Contemporary Societies” which is the second framework in which our approach is rooted.

As a result  and as illustrated in the next we defined “Towards social determinants of ICT for Health” as follows:

  • Social determinants of health and health inequalities, therefore structural and intermediary determinants produce different levels of ICT access (motivation, material, skills and usage).
  • Unequal access to ICT will generate different levels of ICT for Health access as well as different levels of willingness to use ICT for Health.
  • ICT for Health access depends on the properties of ICT and the relationship among Motivation; ICT for Health readiness and Internet Health information.
  • Motivation includes Triggers, Empowerment and Barriers
  • ICT for Health readiness includes Awareness, Material access; Skills and Usage
  • ICT for Health Assessment includes how individuals use and evaluate this type of technologies for themselves or for others (social life of information) as well as their perception about usefulness and learning.
  • ICT for Health Access gives rise to different level of Participatory Health through the utilisation (individually and socially) of ICT for Health in daily life and behavioural changes due to the ICT for Health impact on: Health management; Health care demand and Health care quality
  • These impacts could modify both structural and intermediary determinants and distribution of health and well-being.

III.    Online panel survey technical information

Based on the above framework, we gathered data through a questionnaire which we designed and structured around five main blocks :

  • Block A: Health status and health care and social care services use
  • Block B: ICT for Health Motivation and Health Information sources
  • Block C: ICT Access
  • Block D: ICT for Health Readiness and Evaluation
  • Block E: Socio demographic profile of participants

To reach our target population, we have used the Internet as a methodological tool. Survey research is becoming a frequently used methodology due to the advancement of computer hardware, software and increasing access to the Internet. Furthermore, online surveys offer a valid alternative to the postal, telephone or face-to-face surveys as long as technical, methodological, ethical and legal considerations are taken into account. Table 1 resumes the technical characteristics of the study.

Technical information

Population: Citizens aged from 16 to 74 years old who have used the Internet in the last three months.
Scope of countries
: Austria, Belgium, Germany, Denmark, Estonia, Finland, France, Italy,    Netherlands,  Sweden, Slovenia, Slovakia, Spain, United Kingdom
Type of survey: Online
Sample size:    1,000 interviews per country - 14,000 interviews in total.
Quotas: Country - Gender (Female/Male) - Age Group (16-24/ 25-54/ 55-74)
Sampling error +0.85% for overall data and +3.16% for country-specific data. In all cases, a maximum indeterminate probability (p=q=50), for a confidence level of 95.5% is applicable for each one of the reference populations
Weighting: Proportional allocation for each country. Weighting by country to be able to interpret the overall data.
Sampling: Individuals have been sampled in a completely random manner.
Fieldwork period:  20 July 2011 to 20 August 2011

It should be noted that the data analysed in this report relates to an Internet user population which also forms part of online panels. Accordingly, it can be deduced that the respondents’ profile in terms ICT uses is slightly more advanced than that of the general population of the surveyed countries. However the underlying dimensions identified and their relationship remain valid.

IV.    ICT access

With respect to Internet based activities, the sampled population mainly uses it to search for information (68% every day), sending e-mails with attachments (41%), online banking (20%), social networks (39%) and instant messaging (23%). Internet activities are linked with the male gender, the youngest age groups, a university education, self-employment and entrepreneurs, students, population density and a good state of health.

The factor analysis helped identify the main underlying dimensions of Internet activities. Four factors have emerged:

  • Basic uses
  • Individual uses
  • Social - Web 2.0 uses
  • Tech uses

These factors represent a social gradient of Internet activities from the easiest use of the Internet (basic uses) to the most sophisticates activities (tech uses).

V.    ICT for Health Motivation

Individuals were asked about the triggers to utilise ICT for Health. More than a third of the sampled European population indicates a significant use of ICTs in health to better understand a health problem or disease (39%), to find additional sources of information (36%) and to develop knowledge and personal satisfaction (35%). A little further behind, but still with a relevant frequency, there is the perception that ICTs in health are very useful to help a family member or a friend who is ill (31%), to prevent illnesses or to adopt a more healthy lifestyle (28%), to find a solution to or a treatment for a health problem (28%), to obtain different points of view about an issue (22%), and to access an online health service (21%). Finally, and as a counterpoint, only 11% of European citizens give much importance to the use of ICTs in health for participating in online discussions.

With respect to the socio-demographic characteristics of the population, the perception of the importance of ICT in health as triggers is much more positive for women, young people, the middle aged, those with a tertiary education, the employed, students, and people in a bad state of health or with long standing illnesses.

From these items two factors have emerged:

  • social and services oriented and
  • individual oriented uses.

Empowerment, broadly understood as the development of personal involvement and responsibility is one of the goals of prevention, promotion and protection in health. This definition assumes that responsibility is a more active form of control while competence refers to aptitudes or qualities that make it possible to be more autonomous and take a role in decision-making. Factor analysis identified these two dimensions of empowerment Moreover, three different perspectives of personal empowerment seem to coexist with respect to Health:

  • ability to comply with expert advice (professional perspective)
  • Self-reliance through individual choice (consumer perspective)
  • Social inclusion through the development of collective support (community perspective)

Overall, this greater digital empowerment for the European citizens when it comes to their health and the healthcare professionals is linked with higher education levels, the worst states of health and the existence of long-standing illnesses

Finally, individuals were asked about the barriers to utilise ICT for Health. Lack of privacy (52%), security (51%), reliability (47%) and trust (46%) were the four main barriers for ICT uses for health indicated by the sampled European population to be very important. Other justifications were the lack of liability (38%), health literacy (36%), knowledge (33%), access to ICTs for health (29%), motivation and interest (28%), and the lack of digital skills (24 %).

Firstly, women are much more sensitive to barriers to the ICT use for health than men, particularly in terms of a lack of confidence. Similarly, the perception of barriers to ICT use for health is also much more evident in older people, those with lower levels of education and the inactive. Lastly, it is also worth highlighting that the presence of long standing illnesses is also very sensitive to lack of confidence.

The underlying dimensions of these items are:

  • Lack of confidence and
  • Lack of readiness.

VI.    ICT for Health usage

When it comes to specifically using the Internet for health and wellness, the research has provided interesting information, with notable relative differences. The main use of the Internet for health is for individual information searches, rather than sharing information, communicating or interacting about health and more particularly information searches about physical illnesses or conditions.

Over half of the sampled European citizens have never used the Internet to buy medicine or vitamins online (56% of the total); participated in online support groups for people with the same health issue (60%), used social networking sites for health and wellness issues (58%); used e-mail or websites to communicate with a doctor or their office (58%); analysed the privacy policy for personal information in medical websites (52%); explained a medical issue online in order to make contact with an e-health medical service (61%) or with other users (58%); disclosed medical information on social networking sites (67%); or disclosed medical information on websites to share pictures, videos, or movies (67%).

The specific use of ICTs in the health sector is still quite limited among the sampled European citizens. Around three-quarters of the sampled population have never experienced any of the specified ICTs for health uses: 79% of individuals have never made an online consultation through videoconference with healthcare professionals. 75% have not received medical or clinical tests online either. 77% have not accessed or uploaded medical results via a specialist provider, such as Google Health or Microsoft Vault. 76% have not accessed or uploaded medical results via an Internet application provided by a health organisation. 76.6% have not used health or wellness applications on mobile telephones either. And 73.6% of the sampled population has not used ICT applications to transmit vital signs and other clinical information anytime or anywhere.
With respect to the remaining socio-demographic factors, the analysis shows homogeneity in terms of the overall use of ICT for health, which is more frequent in the young population, those with a tertiary education, students and the employed, those in densely populated urban areas, people in a bad state of health and those with long standing illnesses.

The factor analysis of ICT for health activities reveals two underlying dimensions:

  • ICT for Health oriented towards Information and Communication and
  • ICT for Health oriented towards services and devices.

Finally, these items allow us to analyse individuals’ level of awareness, skills and willingness. First of all, individuals were directly asked about their level of awareness. Second, the number of activities carried out by individuals was considered as a proxy for skilled individuals. Third,
individuals who stated they never carry out these activities or were not aware of them were asked about their willingness to carry out these activities. The factor analysis of willingness reveals three underlying dimensions

  • Willingness to use Internet Health information
  • Willingness to use Web 2.0
  • Willingness to use services and devices

These factors are consistent with the underlying dimensions of ICT readiness mentioned before.

VII.    ICT for Health Impact

The study has also provided evidence about the consequences of ICT for Health utilisation. It has to be said that the perceptions are positive overall. 58% of the sampled European population state they agree that ICT use for health allows savings in terms of  cost of travel and time. 56% state that they would be willing to share personal health information with their doctor despite the privacy issue. 55% state that ICTs for health can improve the possibilities for caring for themselves and monitoring their state of health. 55% agree with the fact that ICT use for health leads to greater patient satisfaction. 54% agree that e-health can improve the quality of the medical services received. 50% of the European citizens consider that ICT use for health can change their behaviour towards a healthy lifestyle.

Slightly under half of the sample of European citizens, 43%, agrees that ICT use for health can improve their state of health. 42% consider that they would feel more comfortable and safe if they used a remote monitoring system for their health condition. 42% consider that ICT use for health increases ICT use in other fields of daily life. 32% agree that the use of health services through the Internet substitutes face-to-face consultations with doctors. 32% agree that online health services and face-to-face services are of equal quality. And lastly, 23% of European citizens would be willing to pay for access to Internet health services to improve their state of health or that of their relatives.

Positive attitudes about the impact of ICT for health are more prominent  among the youngest population, those with a tertiary education, and those that live in densely populated areas. The only notable difference between individuals with bad state of health and those with good state of health is the perception by the former that ICT uses for health can improve the quality of health services received (57%). Meanwhile, citizens with long standing illnesses clearly state their favourable perceptions of ICT use for health, as opposed to citizens that do not have long standing illnesses. In particular, they state that ICT use can improve patient satisfaction (56%), improve caring and health condition monitoring skills (57%), save travelling costs and time (60%), and that they are willing to share personal information through the Internet with doctors and health organisations despite privacy issues (60%).

Finally the factor analysis reveals two underlying dimensions:

  • Impact on quality of healthcare and healthy behaviours
  • Impact on healthcare access.

VIII.    Social determinants of ICT for Health: key dimensions

All items gathered were grouped into underlying dimensions through multivariate statistics following our conceptual framework. This exercise allows us to transform items into concepts and therefore understand the complexity of the ICT for Health ecosystem.

Underlying dimensions of Social determinants of ICT for Health

social-determinants-of-ict-for-health-key-dimensions

All above mentioned unveiled the complexity of ICT for Health. To tackle this complexity,   correlation analyses of all dimensions have been performed. The main results of these analyses are summarised in the following figure:

social-determinants-of-ict-for-ehealth-key-dimensions

  • Social determinants of Health (structural and intermediary), especially education and age, produces different levels of ICT readiness. Advance uses of the Internet such as Tech and Web 2.0 uses are more likely to be carried out by the young, the healthy and the well-educated population while basic uses are mostly performed by the elderly, therefore individuals with worse health status (chronic patients and individuals having reported higher numbers of health problems).
  • Unequal ICT readiness generates different levels of motivation. Individuals making more advance uses are triggered by the potential of ICT to facilitate social interaction and services related to health while individuals whose uses are basic or individual are triggered mainly by Internet health information for personal proposes. Furthermore, individuals with the lowest level of readiness (basic uses) and having reported more health problems lack confidence in the use of ICT for Health. Nevertheless, this lack of confidence is counterbalanced by a higher level of empowerment (competence oriented).
  • Both ICT for Health usages (Services and Devices and Information and Communication) are specially driven by social and services triggers while individual triggers are only slightly correlated with Information and Communication usages, therefore less advanced uses.
  • Both dimensions of Empowerment push ICT for Health usage. Individuals who are more competence-oriented are more inclined to Information and Communication usage while individuals who are more control-oriented are more likely to use Services and Devices. Thus individuals who feel more responsible for their health status are more likely to use Services and Devices while individuals who want to be more autonomous (competence refers to aptitudes or qualities that make it possible to be more autonomous) are more likely to utilise Information and Communication. If we consider individuals’ education, age and health status it looks like Services and Devices are related with well-being and wellness practice, therefore with health prevention and promotion while Information and Communication are more related with illness, therefore with cure and independent living
  • All individuals using ICT for Health faced the same barriers; therefore lack of confidence and lack of readiness are not correlated significantly with ICT for Health usages. Nevertheless, lack of confidence is negatively correlated with the ICT for Health impact on the access dimension. Individuals need a certain level of confidence in ICT for Health to go beyond information and communication and engage with services such as RMT, Personal Health Records or videoconference consultation.
  • The utilisation of Services and devices is strongly correlated with the perception that ICT would have an impact on both healthcare access and quality and healthy behaviours while the utilisation of Information and Communication is slightly correlated with Quality and healthy behaviours only.
  • The number of health problems reported by individuals is only slightly correlated with Information and Communication Usage and it is unrelated to Services and devices utilisation. Therefore, individuals who could take more advantage of Services and devices, due to their health status, are more likely to be oriented towards information and communication usage only.

IX.    Lessons learned

The study reported here reveals the potential of ICT for Health to promote active and healthy individuals and increase empowerment. Even though our findings relate to Internet users, it is worth pointing out that new health inequalities are emerging due to the impact of the “traditional determinants of heath” on ICT readiness.

Therefore, eInclusion policies related to ICT for Health are needed to ensure that individuals with low socio-economic status and more health problems are able to benefit from these types of technologies. These ICT for Health divides specially impact on the elderly. However, there is an opportunity for them to engage with the Information Society through ICT for Health due to the importance of health issues in their daily life.

The relationship between the different typologies of ICT readiness and ICT for Health Motivation and Impact reveal that:

  • Young individuals are already using this type of technologies mostly in relation with wellness and healthy live style. These uses enable an entire world of possibilities related with health promotion and prevention, especially considering that young individuals are heavy Web 2.0 users.
  • Middle age individuals are also active users of ICT for Health acting as gatekeepers of this type of technologies within the household. Therefore these individuals could act as enablers for others i.e. both for the elderly and the young within households
  • The elderly are basically using ICT for Health for information and communication purposes. There is a gap between this type of use and services and devices uses which could be more effective in relation with cure and chronic conditions.

Individuals between 16-54 with chronic conditions, going under long-term treatment and with more than one health problems are more likely to use ICT for Health than individuals without these type of health problems. Individuals between 55-74 who are healthy are more likely to use ICT for Health, especially for Information and Communication, than individuals with worse health status. Therefore, in the short term, this group of individuals will be pushing for health systems to provide them with new solutions (services and devices) when they need to tackle a health problem. This pressure will increase during the next decade when middle age individuals become elderly. Therefore health systems are facing the challenge of having to promote further ICT innovation to answer these new demands. While this is an opportunity to improve both sustainability and efficiency of healthcare system, it is associated with a number of challenges linked to eHealth deployment.

Further, during this transition, health systems can not leave out the elderly who are not active and healthy: this group of individuals can not be omitted as they are the current intensive users of healthcare systems. There is an opportunity to include them in the Information Society by improving ICT readiness and ICT for Health willingness and awareness.

Internet users and mHealth in Europe

Following Social determinants of Health and ICT for Health (eHealth) conceptual framework and the results from Citizens and ICT for Health in 14 EU countries: results from an online panel survey I have been exploring the difussion of mHealth in Europe.  Internet users were asked about the use of health/wellness application on their mobile phone:

  • 77% stated that they never use it;
  • 7% stated that they were not aware of it;
  • 6% stated that they use it less than once a month
  • 5% stated that they use it at least once a month (but not every week)
  • 4% stated that they use it at least once a week (but not every day)
  • 1% stated that they use it every day or almost every day

Socio-demographics’ characterisation revealed that internet users who at least once have used mHealth are more likely to be male; 16-24; students; living in a densely-populated area; reported good health status and not suffering a chronic condition. Therefore, it looks like we are talking mainly about health prevention and promotion opportunities; wellness and healthy life styles. I’m now analysing the data following the conceptual framework to better understand mHealth users and empowerment; trigger; barriers; impact… Comments are always welcome!

Meaningful use of eHealth in Acute Hospital in Europe - Benchmarking eHealth deployment

A few months ago I posted about a report titled A Composite Index for the Benchmarking of eHealth Deployment in European Acute Hospitals Distilling reality into a manageable form for evidence-based policy co-author with Cristiano Codagnone. On 23th March I was invited by the Catalan Agency for Health Information, Assessment and Quality to present the benchmarking exercise, including in the analysis data about Acute hospital in Catalonia gathered by TicSalut.

I wonder if this benchmarking exercise could be understood as a meaningful use of eHealth in Acute Hospital in Europe. The composite indicator is presented in a transparent manner so any practitioner or policy-maker can utilise the weights to benchmark its acute hospital within its country and with other European countries. This can naturally lead to the definition of a different approach to the construction of eHealth deployment and usage composite indicators and may at any rate produce standardised and comparable longitudinal and cross-sectional data.

Enhanced data gathering through active collaboration with Healthcare Actors

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

Social determinants of Health and ICT for Health (eHealth) conceptual framework

Lately I have been designing, launching and gathering an online panel survey to a representative sample of Internet users in 14 European countries (approximately 14,000 responses). To ground the questionnaire I have developed a conceptual framework inspired and based on the two main sources. On the one hand, the Marmot Review team:

On the other hand, a Framework for Digital Divide Research developed by Jan van Dijk in several publications:

In a recent presentation about Health and Web 2.0 I tried to match both frameworks and I have posted about Inverse care law 2.0  several times using different scientific and statistical sources.  It is worth pointing out (and obviously reasonable) that I have not found any references or mentions to ICT for Health in the literature about social determinants of Health gathered through Marmot Review team website.

a-conceptual-framework-for-action-on-the-social-determinants-of-health-discussion-paper-for-the-commission-on-social-determinants-of-health

However, both frameworks (see red boxes in both figures) mention individual and social characteristics as social determinants of health and of the Internet usage. Furthermore, van Dijk includes HEALTH and ABILITY as a personal category (and I have added Health as a sphere of participation in Society and emphasis the Divides).

deeping-digital-divide

Based on and inspired by this two frameworks I have developed Social determinants of Health and ICT for Health (eHealth) conceptual framework.

social-determinants-of-health-and-ict-for-health-conceptual-framework

All concepts and boxes  of this framework are based on scientific references and the relationships established by arrows have been empirical or theoretical driven. I’m currently working on it, however I have shared this framework to gather inputs to improve it. I would love to know your comments and ideas.

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

Innovation, Active patients and Diabetes

Yesterday I participated in a workshop about Innovation, active patients and Diabetes. I would like to share some of the scientific references I used for my presentation

Glasgow, R. E., Kurz, D., King, D., Dickman, J. M., Faber, A. J., Halterman, E., et al. (2011). Twelve-month outcomes of an Internet-based diabetes self-management support program. Patient Educ Couns, .

Osborn, C. Y., Mayberry, L. S., Mulvaney, S. A., & Hess, R. (2010). Patient web portals to improve diabetes outcomes: a systematic review. Curr Diab Rep, 10(6), 422-435.

Greene, J. A., Choudhry, N. K., Kilabuk, E., & Shrank, W. H. (2011). Online social networking by patients with diabetes: a qualitative evaluation of communication with Facebook. J Gen Intern Med, 26(3), 287-292.

Weitzman, E. R., Cole, E., Kaci, L., & Mandl, K. D. (2011). Social but safe? Quality and safety of diabetes-related online social networks. J Am Med Inform Assoc, 18(3), 292-297.

I would like to thank Joan Carles March (@joancmarch) for the invitation.

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).