This July (16th and 17th) Science Commons has organized a workshop in Barcelona. The goal is to conclude the workshop with a set of shared principles that can effectively guide the development of a collaborative infrastructure for knowledge sharing — one that increases the value of each independent contribution to the global knowledge commons. To reach this goal the organizators have design an excellent programme. Furthermore, I’m sure that participants will enrich the discussion.

On the other hand, the last Eurohealth publication, a joint initiative between the European Observatory on Health Systems and Policies and the London School of Economics and Political Sciences - Health, includes an article entitled Access to research data in Europe written by Philipa Mladovky, Elias Mossialos and Martin Mckee:

Summary: The European Commission’s Seventh Framework Programme (FP7) is much more ambitious than its predecessor and health research has been boosted, taking €6 billion of the overall budget of €50.5 billion. Yet, in contrast to other leading research funders, FP7 is largely silent on the issue of access to research data. Sharing health research data is in many ways more complex than other types of research data because of the ethical and regulatory issues. However, these and other technical, legal, cultural and institutional barriers to increasing access to research data should not discourage policy development in this area, since there are many potential benefits.

Keywords: Data, Data Sharing, Research Funding, European Commission

This article could be another input to encourage and stimulate the workshop discussion and to promote Health Commons.

Lately I’ve been reading some papers from Prof. Dr. Reinhold Haux. I’m really impressed with his career. In 1996 he published with other colleagues A systematic view on medical informatics:

Medical informatics is defined as the scientific discipline concerned with the systematic processing of data, information and knowledge in medicine and health care. The domain of medical informatics (including health informatics), its aim, methods and tools, and its relevance to other disciplines in medicine and health sciences are outlined. It is recognized that one of the major tasks of medical informatics is modelling processes. In this context, biological, communication, decision, engineering, educational, organizational and computational processes are distinguished and described.

One year later he wrote Aims and tasks of medical informatics:

Ten major long-term aims and tasks, so to speak ‘grand challenges’, for research in the field of medical informatics, including health informatics, are proposed and described. These are the further development of methods and tools of information processing for: (1) diagnostics (’the visible body’); (2) therapy (’medical intervention with as little strain on the patient as possible’); (3) therapy simulation; (4) early recognition and prevention; (5) compensating physical handicaps; (6) health consulting (’the informed patient’); (7) health reporting; (8) health care information systems; (9) medical documentation and (10) comprehensive documentation of medical knowledge and knowledge-based decision support. Work is, in part, already in progress. To all these aims and tasks medical informatics can and maybe should make substantial contributions. Prior to outlining the above aims and tasks, an account is given of the meaning of medical informatics, of the objective it pursues in general and of its achievements so far. The present paper intends to contribute to a broad public discussion of the aims and tasks for research in the field of medical informatics.

In 2002, he lead the writing of Health care in the information society. A prognosis for the year 2013

Our society is increasingly influenced by modern information and communication technology (ICT). Health care has profited greatly by this development. How could health care provision look in the near future, in 10 years, or more precisely, in the year 2013? What measures must be undertaken by political and self-governing health institutions, and by medical informatics research, to ensure an efficient, medically advanced and yet affordable future health care system? Three factors will greatly influence the further development of information processing in health care within the near future: the development of the population, medical advances, and advances in informatics. These factors have motivated us to set up 30 theses for health care provision in the year 2013. The theses cover areas of health care, such as its people, its information systems, and its ICT tools. Three major goals requiring achievement have been identified: patient-centered recording and use of medical data for cooperative care, process-integrated decision support through current medical knowledge, comprehensive use of patient data for research and health care reporting. In consequence, political institutions should provide a framework for networked, patient-centered health care. They are called on to regulate the storage and exchange of health care data and of appropriate information system architectures. Finally, the health care institutions themselves must emphasize professional information management more strongly. Relevant research topics in medical informatics are: comprehensive electronic patient records, modern health information system architectures, architectures for medical knowledge centers, specific data processing methods (`medical data mining’), and multi-functional, mobile ICT tools.

This article promoted a interesting debate among other experts. In 2006 he wrote Individualization, globalization and health – about sustainable information technologies and the aim of medical informatics:

This paper discusses aspects of information technologies for health care, in particular on transinstitutional health information systems (HIS) and on health-enabling technologies, with some consequences for the aim of medical informatics. It is argued that with the extended range of health information systems and the perspective of having adequate transinstitutional HIS architectures, a substantial contribution can be made to better patient-centered care, with possibilities ranging from regional, national to even global care. It is also argued that in applying health-enabling technologies, using ubiquitous, pervasive computing environments and ambient intelligence approaches, we can expect that in addition care will become more specific and tailored for the individual, and that we can achieve better personalized care. In developing health care systems towards transinstitutional HIS and health-enabling technologies, the aim of medical informatics, to contribute to the progress of the sciences and to high-quality, efficient, and affordable health care that does justice to the individual and to society, may be extended to also contributing to self-determined and self-sufficient (autonomous) life. Reference is made and examples are given from the Yearbook of Medical Informatics of the International Medical Informatics Association (IMIA) and from the work of Professor Jochen Moehr.

This year he also published Health information systems – past, present, future

Summary In 1984, Peter Reichertz gave a lecture on the past, present and future of hospital information systems. In the meantime, there has been a tremendous progress in medicine as well as in informatics. One important benefit of this progress is that our life expectancy is nowadays significantly higher than it would have been even some few decades ago. This progress, leading to aging societies, is of influence to the organization of health care and to the future development of its information systems. Twenty years later, referring to Peter Reichertz’ lecture, but now considering health information systems (HIS), two questions are discussed: which were lines of development in health information systems from the past until today? What are consequences for health information systems in the future? The following lines of development for HIS were considered as important: (1) the shift from paper-based to computer-based processing and storage, as well as the increase of data in health care settings; (2) the shift from institution-centered departmental and, later, hospital information systems towards regional and global HIS; (3) the inclusion of patients and health consumers as HIS users, besides health care professionals and administrators; (4) the use of HIS data not only for patient care and administrative purposes, but also for health care planning as well as clinical and epidemiological research; (5) the shift from focusing mainly on technical HIS problems to those of change management as well as of strategic information management; (6) the shift from mainly alpha-numeric data in HIS to images and now also to data on the molecular level; (7) the steady increase of new technologies to be included, now starting to include ubiquitous computing environments and sensor-based technologies for health monitoring. As consequences for HIS in the future, first the need for institutional and (inter-) national HIS-strategies is seen, second the need to explore new (transinstitutional) HIS architectural styles, third the need for education in health informatics and/or biomedical informatics, including appropriate knowledge and skills on HIS. As these new HIS are urgently needed for reorganizing health care in an aging society, as last consequence the need for research around HIS is seen. Research should include the development and investigation of appropriate transinstitutional information system architectures, of adequate methods for strategic information management, of methods for modeling and evaluating HIS, the development and investigation of comprehensive electronic patient records, providing appropriate access for health care professionals as well as for patients, in the broad sense as described here, e.g. including home care and health monitoring facilities. Comparing the world in 1984 and in 2004, we have to recognize that we imperceptibly, stepwise arrived at a new world. HIS have become one of the most challenging and promising fields of research, education and practice for medical informatics, with significant benefits to medicine and health care in general.

All these articles show the development of ICT during last decade in health care systems.  It has to be remarked that there is a soft shift from determinism to a sociocultural understanding in the way technology is approached. This development also shows how health is taking advantage of the distinctive features of the ICT stated by Prof. Castells:

• Their self-expanding processing and communicating capacity in terms of volume, complexity, and speed.
• Their recombining ability on the basis of digitization and recurrent communication.
• Their distributing flexibility through interactive, digitized networking.

I have been reading Health, Technology & Society. A Sociological Critique written by Andrew Webster, who has also written other articles and books about this issue. I would like to share my notes about the first chapter titled Understanding Innovative Health Technologies, partially  based on other author’s paper Innovative Health Technologies and the Social: Redefining Health, Medicine and the Body.

The book explores fundamental changes in the way we understand and manage our health and our bodies, and how this understanding has been shaped by, and given expression through, developments in medical and related technologies (p.1)  from a sociological perspective. This perspective argues that these technologies and the techniques, models and assumptions on which they are based, are given meaning through the way they are tied into other technologies ans social practices… The meaning of health technologies will also vary in different settings (from clinic, to the home, to the Internet), and vary in the way shape diverses notions of ‘health’ found within and between cultures. In this sense, technologies (not only the health but all fields) are best understood as an expression of, and thereby always expressed through, social relationship (p.1) .

The author states that medical technologies are two-sided: they provide new, more detailed, sources of information about our illness but at the same time new forms of uncertainty and risk. These relate not only to our understanding of the illness but also the expectations that inform and guide the social relationship through which we define and manage it. If technologies are congealed social relationship, those that disrupt existing relationship can be specially problematic.

Therefore,  new health technologies not only disrupt relationship we have with other people, they can also redefine our relationship towards our own body and our sense of being well or ill, our sense of control over our body and its parts (p.2).  A sociological perspective is also interested in the processes through which new health technologies are introduced in the first place, and what factors have shaped their introduction. Health and its definition depend not merely on a person’s sense of well being, but on powerful professional, commercial and institutional interests that captures health in order to define, control and exploit or deliver ‘it’ (p.3) .

New technologies, new health?

Webster identifies three innovative health technology based on those areas that are receiving disproportionately large levels of public and private funding upstream or those appearing in documents of health policy world that spends all its time scanning for the ‘horizon’ for ‘disruptive’ technologies…(p.6):

• Genetics-related developments
• Informatics-based systems and eHealth
• Tissue-related biomedicine

Even these three broad areas are strongly related with the development of the Information and Communication Technologies I wil just focus on Informatics-based systems and eHealth. The author refers to E-Health as a mix of digital technologies whose function is to diagnose, monitor, store and relay information about health, the patient, and the huge volumen of management data-flows that characterize national health systems today. They reflect a time of audit, standardization, technocracy and ambitions towards more efficient systems for managing health resources (p.11) . Based on the studies of other author, Webster describes some consequences of these technologies, talking about ’citizen-terminals’, ‘virtual human’, ’smart homes’, ‘health Internet seeker’ and ‘e-scaped medicine’.

Developing the sociological critique

The author remarks there had been a much longer tradition in social theory that located health squarely within the wider structural and cultural dynamics of society (p.15)  and wonders How, we might ask are these structural patterns of health mediated by the new technologies sketched mentioned above: will, for example, the introduction of e-health exacerbate or ameliorate access to health care and advice? (p.16)

What then can we say provides the core issues that would inform a sociological critique of the relations between health, technology and society? Such a critique, he suggests, would explore and challenges the implications of medical technoscience with respect to:

• the socio-economic factors shaping innovation and how these affect the structuring of health care delivery;
• the patterns of inequality in morbidity and mortality;
• the public and the private institutions that are investing huge amounts of political and economic capital in existing and novel areas such as genetics, informatics and tissue engineering fields;
• the regulation and control of new medical technologies;
• embodied knowledge about experience of health and disease. (p.17)

These are the main issues, they need to be understood as part of a wider range of structural and institutional changes characterizing contemporary societies that are not restricted to the field of medicine and health (p.18)

• The growing individualisation of our lives;
• The changing relationships between lay and expert knowledge;
• The increasingly globalised contest over (health) rights and resources;
• The tension between the political regulation and economic promotion of innovation by the state. (p.18)

We can see developments in technoscience in terms of three broad but related changes that have opened up clinical medicine to new influences and actors:

• Socialisation of medical innovation refers to the ways in which lay people are enrolled as active participants in the development of new technologies from the very early stage of develpment.

• Socialisation of clinical diagnosis refers to the fracturing of the medical monopoly over the meaning of health and disease, specially through the arrival of what has been called a ‘new medical pluralism’.

• Socialisation of clinical implementation refers to the ways in which lay people are required, but also perhaps actively embrace a turn towards taking greater responsability for making new health technologies ‘work’.

These three processes have then redefined the spatial, experimental and epistemic boundaries of convetional medicine and clinic. The critique must be the attentive context of use of technologies to reflect any notion of technological determinism across different contexts. It must explore the ways in which users (patients, carers, clinicians, etc.) make sense of technologies and how re-order the meaning of health. It must examine the expectations and hopes that surround them, and the subtle and not so subtle forms of inequity and insecurity they create.

My first approach to theoretical blueprint of Web 2.0 was Informationalism and the network society: a theoretical blueprint of Web 2.0. Via Fabio Giglietto Facebook I have noticed about an articled written by David Beer and Roger Burrows titled Sociology and, of and in Web 2.0: Some Initial Considerations.

Abstract
This paper introduces the idea of Web 2.0 to a sociological audience as a key example of a process of cultural digitization that is moving faster than our ability to analyse it. It offers a definition, a schematic overview and a typology of the notion as part of a commitment to a renewal of description in sociology. It provides examples of wikis, folksonomies, mashups and social networking sites and, where possible and by way of illustration, examines instances where sociology and sociologists are featured. The paper then identifies three possible agendas for the development of a viable sociology of Web 2.0: the changing relations between the production and consumption of internet content; the mainstreaming of private information posted to the public domain; and, the emergence of a new rhetoric of ‘democratisation’. The paper concludes by discussing some of the ways in which we can engage with these new web applications and go about developing sociological understandings of the new online cultures as they become increasingly significant in the mundane routines of everyday life.

I consider the article help us to a better understand of Web 2.0 buzzword.

As well as the video there is an article titled The only Castells Summary of the project Internet Catalonia on the uses of the Internet

It looks like the Web 2.0 has arrived to the field of health education as far as we can find articles talking about it.

I have read Boulos, M., et al. (2006). “Wikis, blogs and podcasts: a new generation of Web-based tools for virtual collaborative clinical practice and education.” BMC Medical Education 6(41): 8 [link]

The paper explores, with examples, some of the current uses of Web 2.0 tools in the education of medical/nursing students, the continuing professional development and education of healthcare professionals, and patient education.

And it is concluded:

If effectively deployed, wikis, blogs and podcasts could offer a way to enhance students’, clinicians’ and patients’ learning experiences, and deepen levels of learners’ engagement and collaboration within digital learning environments. Therefore, research should be conducted to determine the best ways to integrate these tools into existing e-Learning programmes for students, health professionals and patients, taking into account the different, but also overlapping, needs of these three audience classes and the opportunities of virtual collaboration between them. Of particular importance is research into novel integrative applications, to serve as the “glue” to bind the different forms of Web-based collaborationware synergistically in order to provide a coherent wholesome learning experience.

Medical education could be just the beginning and we should pay attention and analize the consequences. But, what about the clinical practice and the relationship between physicians-patients, physicians-physicians and patients-patients?. If we have a new field in health communication as Internet we may think about it not just as a new tool of information and communication but as a new form of social structure.

Most of the Internet health informations seekers use search engines to find what they are looking for on the Web. See:

• Diaz, J. Griffith, R. et al. (2002). Patients’ Use of the Internet for Medical Information. J GEN INTERN MED 17:180-185

• Fox, S. (2002). Vital decisions. [online article]. PEW Internet & American Life Project. [5/10/2006]. http://www.pewinternet.org/PPF/r/59/report_display.asp

• Fox, S. (2004). Prescription Drugs Online. [online article]. PEW Internet & American Life Project. [5/10/2006] http://www.pewinternet.org/pdfs/PIP_Prescription_Drugs_Online.pdf

• Fox, S. (2005). Health Information Online. [online article]. PEW Internet & American Life Project. [5/10/2006]. http://www.pewinternet.org/pdfs/PIP_Healthtopics_May05.pdf

• INEbase (2006). Encuesta sobre Equipamiento y Uso de Tecnologías de la Información y Comunicación en los hogares. Instituto Nacional de Estadística. España
  

• Rokade, A., Kapoor, S. Rao, V. Rokade, K.T.V. Reddy, B.N. Kumar. (2002). Has the internet overtaken other traditional sources of health information? Questionnaire survey of patients attending outpatient clinics. Clinical Otolaryngology. Volume 27, Issue 6, Page 526-528

• Spadaro, R. (2003). EUROBAROMETER 58.2 European citizens and sources of information about health. [online article]. EUROSTAT. [5/10/2006]. http://europa.eu.int/comm/health/ph_information/documents/eb_58_en.pdf

So Internet search engines matter in Internet health information. We may pay attention to these tools.

Introna, L. & Nissenbaum, H. (2000). Shaping the Web: Why the Politics of Search Engine Matters. The Information Society. Vol. 16. nº 3. pp. 169-184 [draft]

Abstract: This article argues that search engines raise not merely technical issues but also political ones. Our study of search engines suggests that they systematically exclude (in some cases by design and in some, accidentally) certain sites and certain types of sites in favor of others, systematically giving prominence to some at the expense of others. We argue that such biases, which would lead to a narrowing of the Web’s functioning in society, run counter to the basic architecture of the Web as well as to the values and ideals that have fueled widespread support for its growth and development. We consider ways of addressing the politics of search engines, raising doubts whether, in particular, the market mechanism could serve as an acceptable corrective.

Keywords: Search Engines Bias Values In Design World Wide Web Digital Divide Information Access

Should we consider ways of addressing the politics of Health Information on the Net as far as Health market mechanism does not work acceptable?