Category Archives: Citizens

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!

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.

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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).

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

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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).

eHealth Literacy as a catalyst to overall digital literacy among the elderly

Susannah Fox has invited Jessica Mark to post on www.e-patient.net:

This is a guest post by Jessica Mark, healthfinder.gov and Outreach Program Manager, Health Communication and eHealth Team in the Office of Disease Prevention and Health Promotion at the U.S. Department of Health and Human Services

The result of this invitation is entitled Making Strides Toward Improving Health Literacy Online where Jessica Mark highlighted part of the work done by the Office of Disease Prevention and Health Promotion. I really enjoy her post so I commented this:

Wonderful post! I wonder if eHealth literacy could be also a tool to integrate the elderly into Information Society / Network Society. It could be a tool to engage them within the tremendous potential of the Internet for other aspects of their lives. Health contents could be just an excuse to capture their attention (e-awareness) and help them to be online (e-readiness)

and Jessica Mark replied:

Francisco, thank you! I love the idea of eHealth literacy as a catalyst to overall digital literacy too. I’d love to hear/talk more about how that might work.

First of all, I would like to quote the main message of Prof. Jan van Dijk‘s book “The Deepening Divide: Inequality in the Information Society

“The digital divide is deepening where it has stopped widening. In places where most of peopel are motivated to gain access and physical access is spreading, differences   in skill and usage come forward. The more information and communication technology is immersed in society and pervades everyday life, the more it becomes attached to all exiting social divisions. It tends to strengthen them, as it offers powerful tools for everyone engaged. This occurs in the context of the evolving information society and network society. This type of society makes both digital and social divisions even more critical” (…) The digital divide is conceived of as a social and political problem, not a technological one. Physical access is portrayed as only one kind of (material) access among at least four: motivational, material, skills, and usage” (p.2-3)

As a part of his framework for understanding the digital divide, Prof. van Dijk has developed “A Causal and Sequential model of Digital Technology Access by individuals in Contemporary Societies” (p.24). I have included HEALTH as a field of participation in Society.

van_dijk_framework

“The core argument of the book sets particular relationships between four states of affairs, in a process creating more or less information and communication inequality in using digital technologies (p.14):

  1. A number of personal and positional categorical inequalities in society
  2. The distribution of resources relevant to this type of inequality
  3. A number of kinds of access to ICTs
  4. A number of fields of participation in society

1 and 2 held to be the causes, and 3 is the phenomenon to be explained, together with 4, the potential consequences of the whole process (…). The core argument can be summarized in the following statements, which comprise the core of a potential theory of the digital divide (p.15):

  1. Categorical inequalities in society produce an unequal distribution of resources.
  2. An unequal distribution of resources causes unequal access to digital technologies.
  3. Unequal access to digital technologies also depends on the characteristics of these technologies.
  4. Unequal access to digital technologies brings about unequal participation in society.
  5. Unequal participation in society reinforces categorical inequalities and unequal distribution of resources.

The general term access to digital technologies has been divided into four specific, successive kinds of access to digital technology, computes, and the Internet connections (p.21):

  1. Motivational access (motivation to use these technologies)
  2. Material or physical access (possession of computers and Internet connection or permission to use them and their contents)
  3. Skills access (possession of digital skills: operational, informational, and strategic)
  4. Usage access (number and diversity of application, usage time)

I have posted before about the importance of eInclusion and eHealth and Inverse Care Law 2.0 talking about the successive kinds of access to digital technology but I have not posted about what are the reasons for not having access to the Internet at home to explain why eHealth literacy could be a catalyst to overall digital literacy among the elderly.

Eurostat’s survey on ICT usage in households and by individuals (2010) stated that the main reasons not to access the Internet at home in almost all countries are related with MOTIVATIONAL ACCESS (does not need to; does not want to) and SKILLS ACCESS

eurostat_access_internet
Using Spain as an example I have crossed these reasons by Age:

spain_non_access

Individuals between 55-74 emphasised the importance of SKILLS ACCESS and MOTIVATIONAL ACCESS. Following the framework and the figures above mentioned, eHealth literacy could be a catalyst to overall digital literacy among the elderly because:

  1. Health could be a motivation for the elderly to use the Internet (e-awareness)
  2. This motivation could be used as a trigger to learn how to use this technology (e-readiness)
  3. Health professional and/or health care workers as well as relatives and/or friends could facilitate this learning process (ehealth literacy)
  4. Use of the Internet for health could open new fields of participation in society for the elderly.
  5. These new fields of participation in society could diminish categorical inequalities and unequal distribution of resources.

Thanks Susannah Fox and Jessica Mark for your inspiring post and comments

No eHealth without eInclusion in Europe – Eurostat 2010

Recently, EUROSTAT has published the results from ICT usage household survey 2010. I have been analysing these data developing a Digital Health Care Demand in Europe and I would like also to share my analysis of  “individuals who  used the Internet for seeking health information on injury, disease or nutrition” (European Union 27 Member States), inspired by The Power of Mobile written by Susannah Fox. In my case, I would like to emphasis the raise of the inverse care law 2.0 to justify that there is no eHealth without eInclusion, in other words quoting Europe’s Digital Competitiveness Report 2010:

“In addition, while health-on-the-web may empower in various ways those who have access to the internet, the flip side of this is that those without internet access may become relatively more disadvantaged in health matters. For them, the experience may be more one of disempowerment through inability to take advantage of new opportunities. Factors linked to existing health divides, including lower health literacy and less proactive health attitudes, continue to contribute significantly to unequal health experiences and outcomes among less advantaged socio-economic groups. There is already some evidence that these groups may be experiencing a ‘double jeopardy’ as a result of an intertwining of these traditional health divides with the new digital divides.”

Firstly, since 2004 the percentage of individuals who used the Internet for seeking health information on injury, disease or nutrition (total individuals and individuals who have used the Internet in the last three months) has increased, even though from 2009 we can see a slower increase, specially in those who used the Internet. These trends facilitate the identification of a first gap between users and non-users.

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To better capture this gap, I have divided the analysis in two part. On the one hand, considering the total individuals we can see the differences between groups of age and level of education.

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Furthermore, we can also identify this gap if we focus on age and education together:

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On the other hand, considering  individuals who have used the Internet in the last three months, you can see that there is still a difference between groups of age, level of education and both together:

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It has to be remarked that most of these trends show that the divides are not going to disappear with time, in some cases these divides will get wider.  Therefore some groups may be experiencing a ‘double jeopardy’ as a result of an intertwining of these traditional health divides with the new digital divides. THUS, THERE IS NO eHEALTH WITHOUT eINCLUSION. Social care, Health care, Health Professionals and Social workers may work together and play a role not just in eHealth or on eInclusion but both to avoid ‘double jeopardy’ and  the inverse care law 2.0.

Note: I have developed the same analysis for all Member States and the gaps are even wider in some countries.

Personal Health Record Seminar

On October 29th 2010 I had the opportunity to participate in the Personal Health Record Seminar organized by TICSALUT Foundation I would like to share my presentation and the video recorded.

Seminari sobre la carpeta Personal de Salut – Dr. Francisco Lupiañez from Fundació TicSalut on Vimeo.

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”.