Health 2.0 for Neurologists

June 23, 2008

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By Barbara Scherokman, MD, FAAN, FACP (Kaiser Permanente), and Michael Segal, MD, PhD (SimulConsult)
Author disclosures

Dr. Scherokman Dr. Segal

Introduction

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:

  • Opening up the process to patients as well as doctors
  • Using modern ways of finding information
    • Internet connectivity that speeds our access to information
    • Web searching that allows us to find information
  • Adding new forms of information exchange that depend on Internet technology

This article discusses these Health 2.0 advances and their implications for neurologists and patients.

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Community Discussions

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:

  • Web forums: Forums are dedicated websites, organized by topic, in which people post questions, answers, and news. Many of these are patient communities. According to a Manhattan Research survey, about 10 million consumers regularly post health data and gain information online.
  • Listserv email communities: Listservs are discussions sent by email to groups of subscribers. The format originated in the 1980s, but continues to be useful for groups that place a premium on confidentiality; see the Child Neuro listserv for one example.
  • Blogs: Blogs, the shorthand term for "weblogs," are websites that post articles, commentary, and other forms of textual, graphic, or multimedia content. Blogs support discussions by virtue of references to other web pages and blogs and by comments appended to the blog postings.
  • User comments on journals: Community discussion has been added to existing medical journals. See the American Academy of Neurology's "Members Speak Out" commenting feature for one example.

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.

'PatientsLikeMe'

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.

BrainTalk

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:

  • The online physician community Sermo performs much the same function as a listserv, but using an online forum restricted to physicians whose credentials are authenticated.
  • The Child Neurology Society started an online journal club in 2008, intended for resident education, with discussions of papers of interest.
Sermo

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.

Tagging Information

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.

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Wiki Documents

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:

  • Should doctors focus on contributing to existing Wikipedia articles? Or is medicine so technical or opinion-based that doctors should favor wikis with authorship restricted to medical professionals? The typical Wikipedia approach is to open up authorship to everyone, though exceptions are made for opinion-based material.
  • Should doctor-authored wikis be sponsored by publishing companies, Wikipedia, professional societies, or other not-for-profit groups? Various groups are already experimenting with these options. The largest medical publisher, Elsevier, has placed the content of a textbook into WiserWiki, with authorship restricted to board-certified physicians. Some not-for-profit groups have also started general medical wikis with authorship restricted to physicians (AskDrWiki) or a slightly wider group of medical professionals (Ganfyd).
  • Should there be separate doctor-authored wikis intended for clinicians and others for patients?
  • Should there be separate wikis for specialties (e.g., the wiki Handbook of Genetic Counseling) or should information be in an all-encompassing collection such as Wikipedia?
AskDrWiki

Computational Wikis

The wiki approach has been used not only for narratives, but for a database used in online diagnostic software. Such a resource, SimulConsult Neurological Syndromes, is being used in the Child Neurology Society's new online case-based education program that is available free to all physicians. For some of the educational cases, the residents are encouraged to run the case through the diagnostic software. In pilot testing, the residents and faculty were able to add information to the diagnostic database that resulted in the diagnostic software giving better differential diagnoses as important facts were added. The information, once accepted by reviewers, was incorporated into the version of the software available to everyone. As a result, the ability of this tool to assist in diagnoses increased as it collected the wisdom of the community of users. (The process is illustrated in online videos.)

Benefits of Health 2.0 Resources

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.

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Author Disclosures

Barbara Scherokman, MD, FAAN, FACP, is at Kaiser Permanente. Michael Segal, MD, PhD, is the creator and owner of SimulConsult.


How to Contribute to Wikipedia

Wikis use a very simple format to specify headings and references to the literature. To edit an article, click "edit this page" and follow some simple formatting rules. You can even start a new article on Wikipedia by registering, pasting into the workspace the following template, and customizing it as needed:

'''New disease''' is a form of [[dystonia]] that has many features in common<ref name="originalpaper">{{cite journal |author= Someone AB, Someoneelse CD, Seniorauthor EF |title= Dystonia with mitochondrial inheritance |journal= Neurology |volume=64 |issue=6 |pages=1106-11 |year=2005 |pmid=12345678}}</ref> with mitochondrial diseases, particularly [[Mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes|MELAS]].

==Clinical presentation==
Dystonia is best measured using rating scales<ref>[http://www.mdvu.org/library/ratingscales/dystonia/ "Dystonia Rating Scales and Scoring Sheets"]</ref>, as were used in the original description.<ref name="originalpaper"/>

==Molecular mechanism==
You would add more excellent content here.

==Treatment==
You would add more excellent content here.

==References==
<references/>

The basic elements are:

  • Title: enclose on each side by three single quotes (''').
  • Section heading: enclose in double equal signs (==).
  • Hyperlink to other Wikipedia page: enclose text in double square brackets ([[ ]]), using either the name of a Wikipedia page, which will appear as a hyperlink, or the name of a Wikipedia page followed by a vertical line character (|) followed by the text to appear.
  • Hyperlink in web page outside Wikipedia: inside and tags, place the hyperlink and the text to appear, or follow the format above for links to PubMed. References can be given short names and referred to more than once, as shown above.
  • References section: typically left empty, as shown above, resulting in references in the text being collected automatically at the bottom of the displayed page.

Explore a Wikipedia page to get a better sense of how these elements are used—the five elements shown above are enough to allow you to create a new page and add much of the material that you would put in a review article in a journal.

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