By Barbara Scherokman, MD, FAAN, FACP (Kaiser Permanente), and Michael Segal, MD, PhD (SimulConsult)
Health 2.0 is a term popularized by Matthew Holt to describe health care information using a "Web 2.0" approach. Holt, who writes the Health Care Blog, defines Web 2.0 as "data sources that get richer as more people use them" by "harnessing collective intelligence." Holt stresses that such richness of data is particularly important in medicine because so much of the information that people need is about unusual symptoms and rare diseases. Holt sees Health 2.0 as "personalized search that finds the right answer" for such non-standard questions and "communities that capture the accumulated knowledge of patients" (and, increasingly, doctors as well).
The core of Health 2.0 is something that doctors have been doing in medicine for well over a century: collecting case reports and research results. Health 2.0 improves this practice in several ways:
This article discusses these Health 2.0 advances and their implications for neurologists and patients.
Community discussions are generated by a group of people interested in a particular topic and exchanging information. Community discussions on the Internet are in various formats:
In principle, all these formats of community discussions are similar to longstanding institutions such as meetings of professional societies and letters to medical journals, but the ability to exchange information instantly and find it by searching the web is a big enough jump in capabilities as to merit the "Health 2.0" designation.
As Matthew Holt stresses, the existence of such communities is particularly important for unusual symptoms and rare diseases. As an example, a member of the patient community "ADD Forums" started a thread titled "Rare Potassium-related ADHD Proposed" to discuss a recently published case report of a family with attention deficit disorder and lidocaine insensitivity. One of the authors of the paper found the discussion thread by doing a web search, and joined in the discussion. The patients started asking others they knew about lidocaine insensitivity, and soon there were several other families identified with the lidocaine–ADHD association. This may help find a gene, and a group of people with ADHD got information about the search for a channelopathy with an ADHD phenotype.
A more general patient community that is focused on neurological diseases is PatientsLikeMe. The site contains active communities for patients with Amyotrophic Lateral Sclerosis (ALS), multiple sclerosis, Parkinson's disease, and HIV/AIDS. The founders say they've "created a platform for collecting and sharing real world, outcome-based patient data," and "are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits." The site's unique approach—which allows members to search for others with similar symptoms and medications—led to the identification of lithium as a potential promising treatment for ALS before the first trial results were published. Filters are now being used to follow outcome measures in ALS patients.
One concern about patient communities is that the information may not be correct or current. Neurologist Dan Hoch, MD, PhD, and colleagues explored this question using the epilepsy community of their BrainTalk forums and found that "a panel of three neurologists and a neurology nurse judged that 6% of the posted information contained factual inaccuracies." In Health 2.0 communities, when incorrect information does appear, it is often corrected quickly, even if all participants are patients.
Communities of health care professionals have a clear advantage in accuracy, though typically such communities are not open to the public in order to facilitate discussion of individual patients. Many of these communities have existed for over a decade, and many remain as email listservs. In recent years, new types of communities have appeared:
One of the advantages of community discussions is that they can mix fact and opinion in a way that fosters creativity. Historically, such a mix has been one of the crucial advantages of being in a top university department. As an example, neuroscientist Eric Kandel, MD is renowned for raising bold hypotheses in such settings. Early in his career, his ideas would sometimes be dismissed as speculation, but Kandel was undaunted and would reply "our thoughts are ahead of our data." Community discussions provide a format for this mix of fact and opinion that can be crucial for sharing and stimulating insights, and they do so on a scale larger than individual academic departments.
Blogs are also evolving in directions that harness the wisdom of the community more effectively. The most widely read blogs get tips from their readers about interesting stories, and as a result, have a breadth of material, opinions, and thoughts far beyond those that one individual could offer. Such "synthesized aggregation" blogs are of particular advantage to busy people because they have a central writer who filters out the noise and amplifies the interesting material. As medical blogging gets more established we are likely to see emergence of synthesized aggregation blogs covering medical topics.
Another way of harnessing the wisdom of the community is tagging interesting material to make it easier to find. Many sites such as Digg do this for general content. In health care, Google has a "Co-Op" program that enlists users to rate and categorize material. As detailed by Marissa Mayer, Google's Vice President overseeing Google Health, such tagging feeds information into the headings that appear in Google searches for health topics. OrganizedWisdom compiles such material into pages of recommended resources using category headings.
Although there is wisdom in a community discussion, it is more efficient for the typical reader to have this wisdom collected in a narrative presentation. Doctors realized this fact decades ago and collected information in textbooks and review articles. Using websites called "wikis," this can be done by many authors in real time. The prototype for wikis is the not-for-profit Wikipedia. People who read a Wikipedia page can click "edit this page" and add sophisticated web content using very simple formatting codes (we describe the process here). For fact-based material, group authorship using wikis works quite well, since the community applauds good changes and modifies bad changes. In the past few years, Wikipedia has become very robust, even for many types of technical information. Although GeneReviews articles tend to have better information, Wikipedia often has an advantage on speed and breadth, and it is catching up on quality.
The medical community faces many questions about how to get involved with wikis:
Health 2.0 resources advance the role of patients as partners in health care. Patient-to-patient sites help people get information and support from other patients who have the same disorders. Doctors should be aware of such sites and encourage patients to use them as resources, particularly for uncommon diseases. Dr. Hoch, one of the founders of BrainTalk, and co-author Tom Ferguson, MD, wrote that "many professionals have seriously overestimated the risks and underestimated the benefits of online support groups and other online health resources for patients." In their survey of BrainTalk users, 64% said they use the forum because their health care provider "didn't or couldn't provide" needed information about their disease.
Patient-to-patient sites also result in benefits directly to doctors, providing an opportunity for physicians to sit in on discussions that can raise issues that haven't made it into the traditional medical literature. This is of particular importance for researchers who wish to test hypotheses with focus groups of people with particular conditions. As Drs. Hoch and Ferguson relate, "These extended patient narratives—no two alike—thus gave rise to an accumulated body of what my colleagues and I began to think of as an expert patient knowledge base."
Some of the most promising approaches are ones in which both physicians and patients interact, giving the best of the patient's perspective and the doctor's wide mechanistic knowledge. Since physicians and patients tend to look for different types of content, there are not many examples where such physician-patient interaction occurs, but this is a form of collaboration that holds much promise. In the short run we are most likely to see such physician-patient collaboration on rare diseases, where patients have knowledge that is difficult for physicians to find otherwise. If approaches can be found to widen such physician-patient collaboration, there is much potential for empowering patients with a mix of self-help and expert help.
Barbara Scherokman, MD, FAAN, FACP, is at Kaiser Permanente. Michael Segal, MD, PhD, is the creator and owner of SimulConsult.
Disclaimer: The opinions expressed in this posting are those of the author only and do not represent the views of the American Academy of Neurology or any of its affiliated subsidiaries.
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