Medecine 2.0
Definition
"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." (http://www.medicine20congress.com/)
Discussion
Dr. Gunther Eysenbach on the five aspects of medicine 2.0:
"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. Apomediation vs Intermediation Environment.
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.
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)." (http://gunther-eysenbach.blogspot.com/2008/03/medicine-20-congress-website-launched.html)
