(Note: A more refined version of this blog entry will be published as editorial in JMIR - once published please cite as: Gunther Eysenbach. Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness. J Med Internet Res 2008 (in press) http://dx.doi.org/10.2196/jmir.1030 . DOI:10.2196/jmir.1030)
Yesterday I officially launched the website (http://www.medicine20congress.com) of the forthcoming Medicine 2.0 congress in Toronto, Sept 4-5th, 2008, which has the by-line “How Social Networking and Web 2.0 changes Health, Health Care, Medicine and Biomedical Research”. Although (in collaboration with the people involved in the International Medical Informatics Association [IMIA] Web 2.0 Task Force) we discussed and collectively came up with a list of topics for the conference (listed here in the call for papers and panel proposals), some additional explanations on what I (as a conference chair) see as being in scope for the Medicine 2.0 conference are in order (these considerations are in part taken from my forthcoming JMIR Editorial – the full paper will appear (and should be cited) as: Gunther Eysenbach. Medicine 2.0. J Med Internet Res 2008 (in press) http://dx.doi.org/ 10.2196/jmir.1030. DOI:10.2196/jmir.1030).
Doing a conference related to Web 2.0 is perhaps always a bit of a risk, as the term Web 2.0 itself is controversial and ill-defined. My simplified view on Web 2.0 is based on Charlton Barreto’s concise description of Web 2.0, which I decided to adopt for the Medicine 2.0 congress:
Web 2.0 is a term which refers to a) improved communication and collaboration between people via social-networking technologies, b) improved communication between separate software applications ("mashups") via open Web standards for describing and accessing data, and c) improved Web interfaces that mimic the real-time responsiveness of desktop applications within a browser window.
There are obviously other definitions, and all of them have their merits, but I believe the description above is broad enough to cover most of the more narrow definitions.
Semantic web applications (sometimes called Web 3.0 – although I really hate this term because the semantic web idea actually precedes many Web 2.0 technologies) and 3D environments (Second Life) can also be seen as second generation Web technologies, and I made an executive decision that those are also within the scope of the Medicine 2.0 congress.
On the scope and definition of Medicine 2.0
I've created the figure above (updated 20/09/2008) to depict how the broader “Medicine 2.0” space can be mapped out. These are grounded in some extensive discussions with other academics and users, as well as a scan of what people submitted in response to the JMIR Medicine 2.0 call-for-papers, but again, this is not written in stone, but just happens to be how I view the field today and how I decided to scope the Medicine 2.0 congress.
The field is obviously highly dynamic and the landscape will change rapidly (in particular the Web 2.0 tools in the core of the graphic as well as the exemplary company/service names written in blue font may change rapidly – readers are invited to let me know if they propose additions or changes).
However, I believe that five major aspects (ideas, themes) emerge from Web 2.0 in health/health care/medicine/science, which will outlive specific tools and services offered. These emerging and recurring themes are (as displayed in the center of the graphic):
1) Social Networking,
4) Collaboration, and
I believe that any academic discourse of the impact of Web 2.0 technologies should be framed around these themes. Each of the 5 themes will be considered in turn below.
Before we delve into these five themes, I should briefly digress and discuss a frequently asked question, which is “what is the difference between Health 2.0 and Medicine 2.0”, or more specifically, why did we decide to call our conference (as well as the JMIR Theme Issue) “Medicine 2.0” rather than Health 2.0. The answer is simple: For purely practical reasons.
First, the term “Health 2.0” is trademarked by Matt Holt for his conference series – while we wish to brand our own (more academically and internationally oriented) conference series without risking confusion with the (successful) work of Matt. While there is clearly an overlap (and we hope that some of the Health 2.0 participants will attend our Medicine 2.0 conference!), we do see our conference as a complement rather than competition to the Health 2.0 conference series, as the latter attracts primarily a business audience, while Medicine 2.0 will primarily attract academics; moreover, Health 2.0 (both in terms of the current “definitions” offered at http://health20.org/wiki/Health_2.0_Definition and the conference) focuses very much on the US system, while Medicine 2.0 has an international focus.
Secondly, Health 2.0 has already been defined by various players, and as a conference chair I take the prerogative to start with a clean slate and to define what we mean with it ourselves.
Thirdly, some (e.g. Frank Dolan [WebCite]) view “Health 2.0” as the consumer-side of things, while we think that ultimately Web 2.0 applications should bring together (and foster collaboration between) different stakeholders and user communities. Fourthly, the dictionary definition of “medicine” is “something that affects well- being” and “the science and art dealing with the maintenance of health and the prevention, alleviation, and cure of disease” (Merriam Webster’s 11th Collegiate Dictionary). Thus, “Health” is a (possible) outcome, while “Medicine” is the means (the science and the art) to achieve the outcome. Much as we would call Web 2.0 business applications “Business 2.0” (business is the means) rather than “Money 2.0” or “Wealth 2.0” (the outcome), I prefer to call Web 2.0 applications in our field “Medicine 2.0” rather than “Health 2.0”. Moreover, as an academic I like the science aspect and I like to see proof (and do research myself) before I actually believe that Web 2.0 applications actually improve health. I also believe that creating successful Web 2.0 applications in our area is as much as an art as it is a science, so I like the “art” aspect in the definition of medicine as well. Lastly, I believe that “health” is one (but only one) of many possible outcomes of Medicine 2.0 applications; others could be cost-savings, improved communication and trust between different stakeholders, improved quality, convenience, user-experience etc. And I stress “possible”, because it remains yet to be proven that those applications actually improve health, venture capitalist rhetoric notwithstanding.
Thus, I view Medicine 2.0 as a wider concept and umbrella term, which includes consumer-directed “medicine” and encompasses Health 2.0 (as far as defined as the consumer-side of things), but which – for example – also includes applications that enables health professionals and biomedical scientists to stay abreast of the current literature and to improve the quality of the scientific output (Science 2.0, Peer-Review 2.0), as mapped out in the triangle in the figure in the lower right angle. While some (e.g. Frank Dolan [WebCite] ) view Health 2.0 “as being those that provide services geared towards the consumer, and Medicine 2.0 those geared towards services for the medical professional”, I should stress that I respectfully disagree with this notion - my perhaps more holistic view on Medicine 2.0 is that this distinction between consumer services and services for health professionals is of limited use, because the ultimate goal of Web 2.0 applications is to bring these user groups together, rather than to erect new walls and to continue the fragmentation and silo-thinking in health and health care. For example, peer-review processes and the quality of the scientific output can well be improved by involving consumers, and it is ultimately consumers who benefit from openness in the science field. While I couldn’t agree more that “medicine” must move out of the hospital and the silos of the current medical system (see my previous blogs and writings on consumer health informatics), I also think that “medicine” is a broad enough concept that also conveys that “medicine” must not necessarily be professionally led (i.e. it includes consumer-directed initiatives, self-help) and includes preventive as well as curative medicine.
Back to the definition of Medicine 2.0: In my framework (see graphic), the three main user groups of current Medicine 2.0 applications are represented as a triangle: consumers/patients, health professionals, and biomedical researchers. Each of this user group is at a different end of the spectrum of specialisation, and “formal” training, but I also like the notion that “the health professional is an expert in identifying disease, while the patient is an expert in experiencing it” (Davidson KP, Pennebaker JW. Virtual narratives: Illness representations in on-line support groups. In: Petrie KJ, Weinman JA, editors. Perceptions of Health and Illness. Amsterdam: Harwood Academic Publishers; 1997. p. 463-86 ). Thus, essentially all users can be seen as ”experts”. Current Medicine 2.0 applications can be situated somewhere in this space depending on what user group they are primarily targeting, however, as said above, the ideal Medicine 2.0 application would actually try to connect different user groups and foster collaboration between different user groups (for example, engaging the public in the biomedical research process).
Putting it all together, my (micro-level) definition of Medicine 2.0 is as follows:
Medicine 2.0 applications, services and tools are Web-based services for health care consumers, caregivers, patients, health professionals, and biomedical researchers, that use Web 2.0 technologies as well as semantic web and virtual reality tools, to enable and facilitate specifically social networking, participation, apomediation, collaboration, and openness within and between these user groups.
The broader idea (the macro level) of Medicine 2.0 or “second generation medicine” is the notion that healthcare systems need to move away from hospital-based medicine, focus on promoting health, provide healthcare in people's own homes, empowering consumers to take responsibility for their health etc. – much in line with what I and others have been writing previously about the broader field of consumer health informatics (of which Medicine 2.0 applications, particularly those in the upper angle of the triangle and PHR 2.0 [WebCite], are one example). Thus, in a way, Medicine 2.0 also stands for a new, better health system, which emphasizes collaboration, participation, apomediation, and openness, as opposed to the traditional, hierarchical, closed structures within health care and medicine (In that sense it is perhaps similar to the broader definition of Health 2.0 proposed by Scott Shreeve [WebCite] – although that definition has been criticized as “perhaps overly ambitious” [WebCite], and I have personally difficulties to see how that notion of Health 2.0 is fundamentally different from what we have been writing for decades on the more general notion of consumer health informatics). Another word of caution: I do think that information and communication technologies can be a catalyst for change, but I think the step from pre-Web era to Web 1.0 was probably a much more significant step to change our thinking in terms of the role of the consumer than the step from Web 1.0 to Web 2.0 (and Tim Berners-Lee, who also dismisses the term Web 2.0 saying that this was what the web was all about in the first place, would agree). Also, while Medicine 2.0 tools clearly have a role to play in accelerating change in health care and biomedical research towards these ideals of participation, collaboration and openess (as does the Internet itself and first generation Web tools), one should not be naïve enough to believe that Web 2.0 approaches alone will be sufficient to suddenly revolutionize the way medicine is currently done – wider policy interventions and change management processes are necessary to achieve this goal. This is analogous to the concept of empowerment and why Internet or Web interventions alone are not sufficient to change the entire health system: “Information” is one necessary aspect in “empowering” a specific group (e.g. consumers), but alone and in itself not sufficient – other dimensions need to be addressed on a political / policy level to truly “empower” a user group, including access (e.g. to resources), choice (e.g. of resources), representation (in decisions about structure and deployment of resources), redress of grievances (mechanisms to address concerns how ressources are used) [Brennan & Safran. Chapter 2 Empowered Consumers. In: Lewis, Eysenbach, Kukafka, Stavri, Jimison. Consumer Health Informatics. Springer, 2005].
Now finally back to the 5 major themes mapped out in the diagram.
Social networking is central to many Web 2.0 and Medicine 2.0 applications and involves the explicit modelling of relationships between people, forming a complex (and scale-free) network of relations, which in turn enables and facilitates collaboration and collaborative filtering processes. This enables users to see what their peers or others with a predefined relationship (“friends”, “colleagues” etc.) are doing, enables automated filtering and selection of “relevant” information (based on what peers are doing), enables reputation and trust management, accountability and quality control, and fosters a viral dissemination of information and applications (it is this “viral marketing” aspect that makes venture capitalists salivating over Web 2.0 applications). I do believe that the social networking aspect (i.e. modelling relationships between players) is a relatively important and new aspect in health informatics. Electronic health records traditionally do not contain any form of modelling of relationships between people (it’s difficult enough to model the doctors’ thinking!), and when we combine social networking approaches with emerging technologies such as Personal Health Records a new class of applications emerges [see my previous entry with my conceptualization of what I call PHR 2.0 [WebCite]]. However, for quality management and collaborative filtering, the application of social networking (and the attempt to model relationships) has been tried before. In fact, almost a decade ago, in the framework of the MedCertain and MedCircle projects, we started thinking about this and viewed the explicit modelling of social relationships and the “who said what about a specific website” as one promising way to guide consumers to high-quality information. We developed a vocabulary to describe relationships between those involved in quality initiatives on the Web, with the eventual goal to build intelligent tools that can harness this information [Eysenbach G. An Ontology of Quality Initiatives and a Model for Decentralized, Collaborative Quality Management on the (Semantic) World Wide Web. J Med Internet Res 2001;3(4):e34.]. Today, this approach might be called a Web 3.0 application, but as I said above, I hate this term, as the relevant technologies such as semantic web, RDF, FOAF etc. pre-date most Web 2.0 technologies. Based on my experiences with MedCertain and MedCircle I also remain sceptical that “Web 3.0” will really take off – my scepticism is grounded mainly in a lack of a business model and huge privacy implications which most people seem to ignore. Can anybody imagine that Facebook would release its vast database content (i.e. social network data) as a machine-readable (RDF-FOAF) data dump?
Participation is another central theme in Medicine 2.0, and is particularly important for the user group of consumers/patients. The Internet has always been a tool for users and citizens to get more involved, but Web 2.0 tools take this to a new level. Personal Health Records and in particular PHR 2.0 [WebCite] are a part of this development. We have come a long way – when I first wrote about consumer health informatics tools opening up the possibility for consumers to view their electronic health record (Eysenbach G. Consumer Health informatics. BMJ 2000) some people thought I was crazy... Personally, I have always seen the Web and related technologies as the perfect tool for user empowerment and engagement, but again, Web 2.0 approaches take this to a new level, as the philosophy of end-user participation and engagement is deeply ingrained in the Web 2.0 thinking (“trust your users”), exemplified by tools like Wikis.
Wikis, rating tools etc are also the perfect example to illustrate that the "participation" theme is also relevant for other user groups such as scientists or health professionals.
Apomediation is a new scholarly socio-technological term that characterizes the process of disintermediation (intermediaries are middlemen or “gatekeeper”, e.g. health professionals giving “relevant” information to a patient, and disintermediation means to bypass them), whereby the former intermediaries are functionally replaced by apomediaries, i.e. network/group/collaborative filtering processes [Eysenbach, 2008 [WebCite] and 2007b]. The difference between an intermediary and an apomediary is that an intermediary stands “in between” (latin: inter- means “in between”) the consumer and information/service, i.e. is absolutely necessary to get a specific information/service. In contrast, apomediation means that there are agents (people, tools) which “stand by” (latin: apo- means separate, detached, away from) to guide a consumer to high quality information/services/experiences, without being a prerequisite to obtain that information/service in the first place. The switch from an intermediation model to an apomediation model has wide implications for example for the way people judge credibility, as hypothesized and elaborated in more detail elsewhere [Eysenbach 2008] [WebCite].
In the health context, disintermediation (cutting out the middleman) means a more direct access of consumer to their personal data (e.g. in web accessible EHRs – left circle of the diagram) and general medical information (on the web – right circle of the diagram) with all its advantages and hazards. The main problem of cutting out the gatekeeper is that the traditional role of the middleman is to guide consumers to relevant and credible information (the intersection of both circles in the center of the diagram) and that by bypassing the middleman consumers/users may “get lost” in the vast amount of information. Apomediation theory conceptualizes that “apomediaries” (which includes Web 2.0 approaches) can partly take over the role of the intermediary and “push” or “guide” users to relevant and accurate information.
The Web 2.0 environment is essentially an “apomediated environment”, with all the issues affecting related to apomediation phenomeon, raised by [Eysenbach 2008] [WebCite].
and summarized in Table 1.
Table: Apomediation vs Intermediation Environment.
(Citation: Eysenbach, Gunther. Credibility of Health Information and Digital Media: New Perspectives and Implications for Youth." Digital Media, Youth, and Credibility. Edited by Miriam J. Metzger and Andrew J. Flanagin. The John D. and Catherine T. MacArthur Foundation Series on Digital Media and Learning. Cambridge, MA: The MIT Press, 2008. 123–154. doi: 10.1162/dmal.9780262562324.123 Copyright: 2008 Massachusetts Institute of Technology. Published under Creative Commons Attribution-Noncommercial-No Derivative Works Unported 3.0 license). http://www.mitpressjournals.org/doi/pdf/10.1162/dmal.9780262562324.123
Apomediation theory further argues that apomediaries, such as users and friends in the case of Digg, can help users navigate through the onslaught of information afforded by networked digital media, giving additional credibility cues and supplying further metainformation. Other examples of apomediaries and apomediation tools include consumer ratings on amazon.com or epinions.com; technologies like PICS or MedPICS labels and its RDF successors that enable machine-processable dissemination and interpretation of user ratings (Eysenbach, Yihune, Lampe, Cross, & Brickley, 2000; Eysenbach & Diepgen, 1999a); collaborative filtering and recommender systems as exemplified by StumbleUpon.com; and other second generation Internet-based services and tools that let people collaborate on a massive scale and share information online in new ways, including social networking sites, social bookmarking, blogs, wikis, communication tools, and folksonomies (Wikipedia, 2007b; Wikipedia, 2007c).
The Dynamic Intermediation-Disintermiation-Apomediation model (DIDA) (illustrated in the Figure below) argues that whether or not consumers prefer an apomediation or intermediation environment is highly situation-specific, and key variables in determining consumer preference are autonomy, self-efficacy, and knowledge in a specific area for which information or support is sought. For example, a cancer patient may initially prefer an intermediary, but with growing autonomy, self-efficacy, and knowledge prefer Web 2.0 approaches to guide him/her to information deemed trustworthy.
Dynamic Intermediation-Disintermiation-Apomediation model (DIDA).
(Citation: Eysenbach, Gunther. Credibility of Health Information and Digital Media: New Perspectives and Implications for Youth." Digital Media, Youth, and Credibility. Edited by Miriam J. Metzger and Andrew J. Flanagin. The John D. and Catherine T. MacArthur Foundation Series on Digital Media and Learning. Cambridge, MA: The MIT Press, 2008. 123–154. doi: 10.1162/dmal.9780262562324.123 Copyright: 2008 Massachusetts Institute of Technology. Published under Creative Commons Attribution-Noncommercial-No Derivative Works Unported 3.0 license).
Apomediation is not only important with the consumer as end-user and the health professional as intermediary in mind. As mentioned in a previous blog post, we also witness an apomediation process in science, with the former intermediaries such as journals becoming partly (and increasingly) obsolete, with much of the communication between scientists taking place on the Web before an article is actually published, necessitating scientists to use "apomediaries" to guide them to the relevant information on the Web (in fact, the only reason why we appear to still need journals is to make online information "citable", which in itself is absurd - as mentioned in a previous post - and could be overcome by archiving tools such as WebCite). Also, health professionals now partly bypass traditional intermediaries such as information brokers or librarians. I remember that when I was in medical school I had a summer job as information broker, where health professionals or scientists would call or see me and I would do an online Medline search for them. Today, people obviously use PubMed and other Internet tools directly, and search the web and/or the library for relevant information. But what is "relevant", and how can we deal with the onslaught of information? The "apomediaries" here are shared bookmarking tools such as CiteULike or Connotea, where people receive pointers to recently published relevant literature based on what others with a similar citation/bookmarking behavior have cited/bookmarked.
Collaboration specifically refers to bringing groups of people closer together who have not or insufficiently interacted with each other (including for example public participation in research, user engagement in health care decisions etc.). From a Web 2.0 perspective, email is old technology – the youth of today is using RSS feeds to keep informed about what others’ in their social network are up to. Collaborative filtering processes (harnessing the “wisdom of the crowd”) provide a powerful incentive for users to collaborate in the first place and to feed information into the system rather than to just “lurk”. For patients this means for example that – once they enter or make available additional information about their health status in a “PHR 2.0” (see my previous blog and figure below)– they can receive resource recommendations based on what other people with a similar profile recommend or do. For health professionals and researchers, collaborative filtering means that they can get relevant recommendations for literature resources once they use social bookmarks, citation tools such as CiteULike or Connotea, or web citation/archiving tools such as WebCite. Collaboration between researchers on one hand and the public and health professionals on the other hand also means improved possibilities for knowledge translation – getting research findings into practice.
Finally, I would argue that openness is another important and emerging theme partly fuelled by the Web 2.0 way of thinking. On one level – the technical level -, Web 2.0 stands for transparency and open interfaces on a coding and interoperability - “don’t lock me in”, “my data belong to me”, “web as operating system”, and “open up your API” are popular philosophies associated with Web 2.0. HealthVault and Google Health both have (or are promised to have) APIs for other people to connect to. The “openness” philosophy of Web 2.0 tools will raise the expectations of the Facebook generation in terms of dealing with their health data. Web 2.0 savvy consumers (especially todays’ generation) will push the envelope and demand more than just a institutions-specific “portal” (also called tethered PHR). Patients 2.0 will demand full control over their data (as a minimum, XML export!) – many Medicine 2.0 applications fall short in that regard, in that people can feed information into the system, but can’t get it out again.
On another – societal - level, Medicine 2.0 also implies openness and transparency which enables for example users (including the public) to access information and data they previously did not have access to (open access journals, open data etc.) or even to engage in the research process (open peer-review).
Medicine 2.0, PHR 2.0 are trademarks registered by the author