This is the kind of story that gets me out of bed before I go to work in a few hours at our small medical library and to try to get the news out of what should be a fascinating development in search, Health 2.0, Science 2.0 and public discussion of patient empowerment and in neurologic science generally. I have been sent through my connections at AltSearchEngines and Next Generation Science a link to the Marketwire press release “PatientsLikeMe Launches Genetics Search Engine for ALS Patients“.

I spent many hours in the amyotrophic lateral sclerosis community of Patients Like Me in 2007 — 2008 and still visit it occasionally. It is a remarkable instance of a close-knit group of people united by the personal tragedy of either having Lou Gehrig’s Disease (ALS) or caring for and/or about someone with it. The founders of Patients Like Me (PLM), Jamie and Ben Heywood, have since created similar online patient communities for Parkinson’s Disease, Multiple Sclerosis and so on.

I briefly met Ben Heywood at a recent Health 2.0 conference. Both he and Jamie are frequent speakers at Health 2.0 and Web 2.0-related gatherings and have been the subject of books and documentaries. The documentary So Much So Fast shows the courageous struggle their brother Stephen made against the ravages of ALS. The solidarity and love his family showed in that struggle is one of the most moving films ever made and should be viewed by literally anyone in the health sciences, encompassing as it does the minutiae of confronting ever growing disability and the quest to obtain accurate medical information in the Internet Age. The Heywood brothers have accomplished remarkable things across a variety of fields, notably in prodding the research establish to fast track research in ALS and to engage in far more transparent practices. They and men like Augie Nieto are the kind of people that leave one feeling that individuals can make a difference even in the face of such frightening specters as a diagnosis of ALS.

But I do have my qualms and concerns about some of the PLM initiatives. Even when papers about it appear in the standard medical literature in PubMed, the authors of the papers are usually affiliated in some way with PLM. It would be nice if there were at least a few by neurologists who have no relationship at all to PLM that reported on advances made as a result of the data acquired from the self-reports that PLM members upload to PLM databases.

The search engine is simply called the Genetics Search Engine, although it covers only ALS and thus is likely to create some branding confusion.

The PLM blog post announcing the launch of the new search engine states: “Today, we’re announcing the launch of our Genetics Search Engine for people with ALS. Imagine finding other patients just like you, down to the genetic level. Patients in our ALS community can now do that. (For patients who don’t see their genetic mutation right now, that’s alright. They can be the first with that genetic mutation to join our community and share information about the disease.) What does sharing genetics mean for research? By capturing data on familial ALS patients’ known genetics, such as the A4V or D90A mutations in superoxide dismutase 1 (SOD1) and the P56S mutation in vesicle-associated membrane protein-associated protein B (VAPB), we can learn more about the cause and effects of every kind of ALS and better our chances of advancing research and finding new treatments. Our goal in launching the Genetics Search Engine (and other upgrades like it) is to help patients find others just like them and enhance our understanding of the phenotype of each genetic mutation (i.e., different causes of ALS have faster or slower disease progression).”

This brings up some interesting issues:

• As noted, there is the matter of branding. The wording “… other upgrades like it” suggests that this is the first of what may become a series of search engines for genetic mutations. That is an intriguing development and illustrates the genuine knack for marketing and technological innovation that has always made PLM a leader in the patient social networking space even as other such communities (such as Trusera) with much less drive to actually contribute to the medical science related to the travails of members have struggled to attract and retain users.

• The Genetics Search Engine does not appear particularly innovative or interesting vis-a-vis search technology. It seems, indeed, to be fairly unspectacular and rudimentary in that respect. But it is certainly more handsome and engaging than ALSOD: the Amyotrophic Lateral Sclerosis Online Database, which covers only SOD1 mutations and is designed for medical professionals, not patients and the general public.

• The wording “Imagine finding other patients just like you, down to the genetic level” is quite fascinating. ALS is a rare disorder and now patients can find in that small group an even smaller group and, now, so can researchers. This has all kinds of implications for organizing patients into lobbying groups for research into that particular mutation. That might actually advance research, given that the intense study of one gene or one mutation could benefit the entire ALS population. Alternatively, it could hinder advancement if a vocal group successfully wins earmarks for what turn out to be blind alleys. In any case, it is a brave new world in which people can form political, emotional and social bonds on the basis of genetic mutations. This is a good thing for public education in medical matters and public discussion of important scientific and bioethical matters.

• The development of the search engine and what becomes of the data is something that all those intrigued by the era of personalized medicine will watch with intense interest. Some argue that such data will prove of limited utility for decades and that it is cruel and deceptive to suggest to patients that hours spent mastering the arcana of genetics will improve their short-term prospects and day-to-day quality of life. Indeed, part of the marketing muddle is that the press release does not make the distinction clear between familial ALS and the sporadic type, the former being much rarer. Jamie Heywood is quoted as saying:

  Beyond the research implications of what this means today, if you’re a patient with familial ALS, you can now use this information to make better decisions about your healthcare and learn from the experiences of others like you.

  But that group is a small subset of the greater ALS patient population as a whole and the press release makes it sound like the Genetics Search Engine is a potential boon for all ALS patients. It could be, but that isn’t made clear.

But one should not complain too much given the obvious solace and genuine enjoyment members find in PLM and the impressive amount of useful information exchanged there on matters of nutrition, respiratory care, assistive technology and such, necessary in the care of patients with this illness. The fact that PLM has 3,400 members worldwide alone is impressive given that there only an estimated 30,000 people with the disease in the U.S. in any given year.

It will be interesting to see what public comment discussion is engendered by this development vis-a-vis patient education and genomics, and the ethical and health information management issues raised by patients taking an ever more intense interest in the building blocks of their very beings and expecting frontline clinicians to treat them by utilizing such data.

This not just an ALS story. This is a new era in medicine.

About the author: Hope Leman writes about Health 2.0 and the e-patient movement at Significant Science. She is also a writer for AltSearchEngines, which covers hundreds of alternative / niche search engines. Hope is a research information technologist for a health network in Oregon and is also Web administrator of the grants and scholarship listing service ScanGrants.

Related articles

• Highlight HEALTH 2.0 – Year in Review 2008
• YouTube as a Source of Health Misinformation
• Social Networks and Health
• Health 2.0 Highlights: February 9th, 2009
• Medicine 2.0 #10 – Medicine and the Second Generation of Internet-based Services

Consumer health sites are all over the Web and more and more of the content they are producing is working its way into search engine results on health-related topics. Some of this material is solid enough, but much is simply banter or commiseration of one heathcare consumer to another. Knowing ahead of time about these sites can save power searchers in health matters time and prevent ill-considered clicking on what is almost certainly likely to be fluff or outright rubbish.

OrganizedWisdom is one such consumer health site and indeed if you go by its notable presence at conferences such as Health 2.0, it is a market leader in this space. It certainly excels at parlaying a bargain basement marketing gimmick, its WisdomCards, into a reputation for business savvy.

On its home page, the peel away top right corner reveals that WisdomCards are “Your guide to the best health resources” and touts “We do the Searching for you!”

Now, I don’t really get the appeal of the whole WisdomCard thing. Basically, each WisdomCard is simply a page of results organized in much the same way as you might find on MedlinePlus, say, or RightHealth.

Moreover, the “hand-crafted by experts” part doesn’t really inspire confidence. Take the WisdomCard for ALS, for instance. Clicking on “About this WisdomCard” reveals that the card was contributed by Tonya J. and reviewed by Pat. However, there is no information about who Tonya J. or Pat are. I was able to find information about the composition of the OrganizedWisdom Physician Review Team. Consisting of four medical doctors, OrganizedWisdom’s Physician Review Board is “responsible for training, educating and guiding all our Guides. In addition, we take great care in hiring people who have extensive health backgrounds, personal experience with health issues, or who may have served as caregivers, health advocates or health professionals.”

Nevertheless, given that credibility is a fairly basic component of consumer health searching on the Web, it is fairly amazing that OrganizedWisdom has received such positive coverage in the business press (the rah-rah, go team buzz it generates in such venues as the Health 2.0 conference is less surprising).

For instance, on the basics of cross-referencing OrganizedWisdom falls flat. Case in point: You can call up a WisdomCard on ALS provided that you call it ALS and not Amyotrophic Lateral Sclerosis and we are told once at the ALS WisdomCard to, “Try also: Muscular Dystrophy; Myasthenia Gravis; and …” (trails off there) but not Lou Gehrig’s Disease, which does not have a WisdomCard of its own, and not Motor Neuron Diseases, which is a topic allocated to a WisdomCard. And on that card you do at least get the last names of the contributor and the reviewer. The Motor Neuron Disease WisdomCard was contributed by Elisa Carter. According to her (self-listed?) health experience, she has spent 15 years working in the medical field as a Supervisor in a Hospital Admissions Department and has managed administrative staff for a large multi-physician office that included pediatricians, a cardiologist and an internist. The Motor Neuron Disease WisdomCard was approved by TaraS. According to her (self-listed?) health experience, “Her medical knowledge comes from years as a medical secretary and in administration for physicians’ offices specializing in internal/pulmonary medicine, orthodontics and pediatrics. She has also served as a health advocate and caregiver for people with disabilities, a role that brought her to a nuanced understanding of Web health search and online research.”

I am not against consumer health sites. Indeed, I get rather impatient with the persnickety attitude some in the medical library community take towards them. But it is unnerving to think that the “serial entrepreneurs” (as founders Steven Krein and Unity Stoakes style themselves) can generate such hype on the basis of some quite sloppy, not ready for prime time stuff as is on OrganizedWisdom. Call in a librarian, guys, to inject some order into the currently messy state of affairs in your WisdomCard world.

I decided to try to determine what qualifications guides (the term appears to cover both contributors and reviewers) must meet. The page Become a Guide outlines a three-step process to apply to become an OrganizedWisdom Guide. First you register with the site, then you fill out a Guide Application, providing as much information as possible about “any related experience, whether in paid or volunteer work, that will contribute to your success. OrganizedWisdom Guides need to be self-motivated, well organized, able to discriminate between good and bad information, and able to check their own work. And yes, spelling and attention to detail counts.” Applicants then take an open book test. At the bottom of the page is a list of reasons OrganizedWisdom rejects Guide applications:

• No relevant experience.
• Misspellings or poor grammar on application.
• Incorrect answers on Open Book Test.
• Applicant did not check “I am over 13 years old.”
• Applicant did not check “I agree to the Guide Terms of Service.”
• Applicant did not provide full name, address and telephone information which we need for payment verification.
• Applicant does not live in the United States (sorry, we can only accept U.S. applicants).

Although the results on the WisdomCards are acceptable, they are not noticeably better in terms of links or richness of multimedia content than you would find on RightHealth and certainly lack the authoritativeness of MedlinePlus. Additionally, the web site has has navigation problems. For instance, it not always clear when you are in a WisdomCard nor how to get to one, except by browsing through an alphabetical list, and even that is not reliable as there seemed to be a WisdomCard for the man Lou Gehrig but not for the disease named after him, but the biographical entry does not appear to be in the alphabetical list and so on.

All in all, much ado about very little in the case of OrganizedWisdom.

Additional health search resources are listed in the Highlight HEALTH Web Directory.

About the author: Hope Leman writes about Health 2.0 and the e-patient movement at Significant Science. She is also a writer for AltSearchEngines, which covers hundreds of alternative / niche search engines. Hope is a research information technologist for a health network in Oregon and is also Web administrator of the grants and scholarship listing service ScanGrants.

Related articles

• Sharing Genes on the Social Web: PatientsLikeMe ALS Genetics Search Engine
• Health 2.0 Highlights: February 9th, 2009
• Highlight HEALTH 2.0 – Year in Review 2008
• Online Patient Community Battle for Survival: MDJunction
• Following the Tweets of Health

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• YouTube as a Source of Health Misinformation
• Medicine 2.0 #10 – Medicine and the Second Generation of Internet-based Services
• Health 2.0 Highlights: November 1st, 2009
• Health 2.0 Highlights: June 6th, 2009
• Sharing Genes on the Social Web: PatientsLikeMe ALS Genetics Search Engine

Three websites make up the Highlight HEALTH Network:

• Highlight HEALTH 2.0
• Highlight HEALTH
• The Highlight HEALTH Web Directory

Each of these sites has a different purpose. Highlight HEALTH 2.0 is a group effort to follow the use of Web 2.0 in health and medicine (if you’re interested in writing a review about a social health network or co-blogging about the integration of Web 2.0 technologies into health and medicine, please let us know). Highlight HEALTH promotes advances in biomedical research to encourage health literacy. Lastly, the Highlight HEALTH Web Directory is an online reference guide for reliable health and medical information.

There are more ways than ever to connect with the Highlight HEALTH Network, including email/RSS, Twitter and Facebook. If you have an internet-enabled cell phone, Highlight HEALTH 2.0 can be accessed via the mobile web.

Top 5 most popular articles

Here are the most popular articles for 2008 (top 5 based on the number of page views/number of days posted):

1. Online Patient Community Battle for Survival: MDJunction
2. iMedix: Reliable Health Search and Patient-to-patient Social Network
3. Mednar Search … and Hope said, “It is good.”
4. Following the Tweets of Health
5. Core Biomedical Research Software and Web 2.0 Tools

Thank you and Best of Health in the coming year!

Related articles

• Online Patient Community Battle for Survival: MDJunction
• Social Networks and Health
• Following the Tweets of Health
• iMedix: Reliable Health Search and Patient-to-patient Social Network
• YouTube as a Source of Health Misinformation

Welcome to the battle for survival among the online patient communities, a.k.a. health-focused social networks and patient support groups. Sometimes they are dedicated sites (e.g. Patients Like Me and Trusera), sometimes the patient communities are just one of the features of a greater health-focused site (e.g. RightHealth) and in some cases they form about half of the offerings of a health site (e.g. Healia, MedHelp). Not all are developing the levels of activity that will enable their communities to gain traction. Given the stiff competition, many of the primary health consumer online patient communities are dying on the vine. For example, as of this writing Healia’s Parkinson’s Disease Community consists of only 11 members, a small number for a fairly common disease.

Today we will take a look at MDJunction. According to the site, “… the ‘MD’ in MDJunction stands for Making a Difference.”

Immediate Online Patient Community

It certainly does seem to have quite a bit of recent activity, obviously a key indicator of the health of these sites. For instance, I am checking the site on a Sunday morning and on the home page a member of the Bipolar Type II Support Group posted just one second ago.

Oops — I just refreshed the page and now that has been bumped down to 15 minutes ago because of other even more recent entries. That’s certainly a high level of immediacy compared to an industry leader, Patients Like Me. I just checked the Patients Like Me Amyotrophic Lateral Sclerosis Community and the most recent entry was five minutes ago.

This illustrates an interesting difference between Patients Like Me and MDJunction: Patients Like Me treats each community as a separate entity (albeit under the Patients Like Me brand name), whereas portals like MDJunction show on the homepage what the most recent activity was in any of the communities (sometimes called forums, depending on the site). Indeed, sometimes forums are within communities, such as Patients Like Me, and sometimes they are distinct entities within the greater site, as with MedHelp. The nomenclature varies with each site, which might be one of the reasons why some sites are less trafficked and some communities devoid of members — it takes time to figure out how each works. Not only can you determine immediately on the homepage of MDJunction what is being discussed in detail, you can note such things as who has just joined the obesity group, who has just registered, who gave another user a hug and so on.

That five minutes ago of MDJunction certainly trumps by a long shot in terms of immediacy the “… about 14 hours ago” of Trusera.

Dead spaces, medical authority and user-generated content

However, there are definitely some dead spaces in MDJunction. The Amyotrophic Lateral Sclerosis Community, for instance, is utterly inert, save for some initial come-ons a year ago by MDJunction co-founder, Roy Lev. But that is true of almost every ALS community save that of Patients Like Me, given the amazingly strong loyalty the ALS patient community has shown to the first mover for an online patient community for that illness. MDJunction’s Parkinson’s Disease Support Group has 23 members and the most recent posting as of this writing was 12 hours ago. That’s fairly good for such sites in this fiercely competitive space.

One always fascinating aspect of the world of online patient communities is the general tone shown toward the medical establishment. For instance, MedHelp touts its ties to medical experts at prestigious institutions (e.g. the Cleveland Clinic). Patients Like Me features pleasant and skillful interjections by a resident nurse as well as commentary and answers by a neuroscientist, but otherwise medical authorities are absent. In contrast, the content of sites like MDJunction and Trusera is almost entirely user-generated, save for Lev’s fairly constant presence in various sections of the site. There are advantages to his omnipresence — it shows his commitment to the service, which is a nice bit of homey personalization compared to the infrequent appearances of Ben Heywood on Patients Like Me. But Lev’s ubiquity on MDJunction verges on hucksterism. It is up to users to determine how much involvement they want from the operators of a site.

Awareness ribbons

One rather interesting feature of MDJunction is the option for users to support a cause and increase awareness by wearing a ribbon. A chart delineates what colors of ribbons are designated for various diseases. For example, we read, “Burgundy ribbons are for myeloma, hospice care, Sepsis, APS (Antiphospholipid Antibody Syndrome), FVL, Thrombophilia, headaches and to support the Permanently Disabled” and “Blue ribbons are associated with Osteoporosis, ARDS, Osteogenesis Imperfecta, Child Abuse, Chronic Fatigue Syndrome, Colon Cancer Arthritis.” Users can affix icons of such ribbons to their comments on the site.

Conclusion

The ads in MDJunction are relatively unobtrusive. Given the punishing advertising climate these days, it will be hard for many of these sites to stay in business. MDJunction seems to have a fairly robust level of loyalty. It will be interesting to see how much of the discussion on medical topics generated on sites like MDJunction appears in search engines results. This is a new phenomenon that bears watching by those concerned about the possible dissemination of health misinformation on the Web.

Additional patient social networks and Health 2.0 resources are listed in the Highlight HEALTH Web Directory.

About the author: Hope Leman writes about Health 2.0 and the e-patient movement at Significant Science. She is also a writer for AltSearchEngines, which covers hundreds of alternative / niche search engines. Hope is a research information technologist for a health network in Oregon and is also Web administrator of the grants and scholarship listing service ScanGrants.

Related articles

• Highlight HEALTH 2.0 – Year in Review 2008
• iMedix: Reliable Health Search and Patient-to-patient Social Network
• Not Much Hope for HopeCube
• Diabetes 2.0
• Social Networks and Health

You might think that very little can be said when you’re restricted to 140 words, but just the opposite is true. You have to be succinct and get straight to the point. This has been a criticism of Twitter since it was launched in October 2006. Call it what you want. Soundbites … media snacking … everyone is busy today and consuming small bits of information is how we’re keep up with the world’s never-ending data stream.

Although there’s been a great deal of speculation in the blogosphere about the death of Twitter, it remains the most widely used micro-blogging service. I’ve mentioned previously that Twitter is a useful communication tool. The social media service allows you to connect with other people who share your interests. I’ve found a great many people interested in health and medicine on Twitter, and have been actively using it since early this year.

Mark Hawker, a health care informatician in the U.K., recently published a list of the Top 30 Health Tweeple or Twitter users. I’m honored to be one of the 30 Twitter users on the list. The top 30 health tweeple include physicians, nurses, medical librarians, medicine and health 2.0 educators and advocates, and healthcare entrepreneurs from around the world. Mark compiled the list of health tweeple you should follow “based on the quality of their contributions and their overall influence in the field.”

However, it was soon realized that many health tweeple were missing from the list. Thus, Mark’s follow-up post, The Forgotten Health Tweeple rounds the list up to 50. Although many of the top 50 health tweeple I already follow, Mark’s list introduced me to others I had not yet discovered.

Even though it’s subjective, I think Mark’s top 50 list accurately identifies people that are actively “tweeting” and discussing health, health 2.0 and medicine 2.0 online. This niche social network within a social network — the health community on Twitter — posts useful and informative content and frequently engages one another, exchanging information and resources. If you use Twitter and you’re interested in health, I highly recommend you follow the top 50 health tweeple.

Interestingly, consumers are also looking for companies on social media websites. Indeed, a recent study found that 93% of social media users believe a company should have a presence in social media [1]. This means that brands are being recognized and sought after in a social media environment. I mention this because I maintain two separate Twitter accounts, one for the Highlight HEALTH Network, which provides a way for Twitter users to stay up-to-date with new articles and resources posted on the Highlight HEALTH websites, and a second for personal use (my personal account made the top 30 list). Feel free to follow both.

• Follow the Highlight HEALTH Network
• Follow Walter Jessen

A word of caution: in my experience, it’s difficult to keep up with the flow of information when you follow too many people. I try very hard to only follow people that are engaging and share my interests. Even when you’re media snacking, you can eat too much!

Here’s a tip: easily keep up with tweets directed at you by locating the RSS link at the bottom of the @Replies page and subscribing to it in your feed reader. You can also convert the feed to email using a service such as Feed My Inbox and you’ll always know when someone sends you a tweet, even if you’re not currently using Twitter.

References

1. Cone Finds that Americans Expect Companies to Have a Presence in Social Media. Cone Inc. press release. 2008 Sep 25.

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• Highlight HEALTH 2.0 – Year in Review 2008
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• Medicine 2.0 #10 – Medicine and the Second Generation of Internet-based Services
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Reliable sources of health information are extremely important to online health seekers. Enter iMedix, a health 2.0 service that combines a healthcare search engine and social networking. iMedix provides health consumers a way to find medical information that has been filtered for reliability and rated by patients with similar interests.

iMedix features

• Search any medical condition, symptom, treatment or drug on top online health sources
• Auto-complete and spell check search queries
• Community ranked health articles
• Health site reliability shown for search results
• Ask questions about any health topic
• Connect with people who share your health interests

The iMedix website makes it easy to transition between a reliable health web search, questions and answers asked in iMedix health communities and iMedix members — all with a single click.

Reliable Health Search

Why use iMedix to search for health information instead of Google? Simple … reliability of search results. iMedix is a community-powered healthcare search engine, which combines a vertical health search engine with a patient-to-patient social network. iMedix uses proprietary algorithms to evaluate healthcare websites and rate top sources. Dozens of thousands of websites that are approved by top medical accreditation organizations such as HON (Health On the Net Foundation) or URAC (Utilization Review Accreditation Commission) are cataloged by iMedix. Individual site accreditation is indicated in the search results along with a clear indication of the source of each article. The iMedix community then provides feedback by rating those sources, further improving the ratings. Thus, users benefit from the collective medical knowledge and experience of the iMedix community.

To the right of the web search results, several members of the iMedix health community associated with the search term are shown. Community members can also be searched by selecting the “Members” link at the top of the search results. The right sidebar also displays questions related to the search term, making it easy for users to transition from a web search to searching questions and answers posted by the iMedix community. Questions and answers can also be searched by selecting the “Q&A” link at the top of the search results. These three sections — web results, questions and answers, and iMedix members — are transposed with the user’s selection. If the user chooses web results, community members and related questions are shown in the sidebar. If the user chooses community members, related questions and web results are shown in the sidebar. iMedix thus allows a user to take a search term and, with one click, query three different data spaces.

The iMedix search engine supports the “AND” operator, allowing for complex searches with multiple parameters. Although you can use the iMedix search engine without signing up, you won’t be able to communicate with iMedix members nor ask or answer questions from the various health communities.

iMedix Health Communities

Although iMedix began as a blogging platform for patients, it has evolved into a patient-to-patient social network. iMedix health communities enable people to share and discuss their health issues with others. Currently, there are ~2000 communities, which iMedix plans to consolidate in the future. Popular communities are shown on the iMedix homepage. Users can easily sort health communities by disease, symptom or drug and browse them alphabetically.

iMedix users can “tag” themselves by indicating health interests in their profile. Many tags are used by iMedix to assign users to health communities, connecting them to other members with similar interests. Additionally, users can browse member profiles to find other users that share a health interest.

Asking a question is as simple as typing it in the “Ask Our Community” box on the right side of the page. The iMedix system extracts keywords and tags, and immediately distributes your question to relevant members. Questions and answers are moderated by community leaders as well as by the community itself. iMedix notifies you as soon as you receive answers to your question. Each answer that is given to a question can be rated by other users, giving it a “thumbs up” or “thumbs down”. Individual answers can also be reported for abuse.

I found user answers to be a mixed bag. Some answers were informative while others … not so much. As with any social network, you take the good with the bad. Like other online social communities, users can “friend” other members, adding members that they find interesting or well informed to their friends list.

What was notably absent was conversation. People with health problems want to talk and share with others that have similar issues. If you’re familiar with Internet forums or messages boards, you’ll be disappointed in the lack of such an application on the iMedix website. However, iMedix users can chat in real time or send offline messages to one another through a private messaging system. There may be an abundance of conversation between patients, but none of it is publicly accessible.

Where iMedix Shines

Immediately after iMedix launched, VentureBeat wrote a disparaging review of the healthcare-community site. Several comments seem overly critical; disapproving of the uncluttered homepage (wasn’t Google praised for its clean, sparse interface?) and skeptical at the lack of a business model. Indeed, when iMedix launched in December 2007, a press release described a direct-to-consumer advertising channel whereby iMedix would connect pharmaceuticals, insurance companies and medical organizations with highly targeted consumers, i.e. iMedix users [2]. The iMedix Privacy Policy clearly states that they “will occasionally send you information on products, services, special deals and promotions”. Note that iMedix provides the ability to ‘opt-out’ of having personally identifiable information used for certain purposes. Other comments seemed to state the obvious: “In effect, iMedix users have only two sources of information — the intermittently useful search function and individual conversations with other users.” While VentureBeat thought it gave the site a “conspicuously information-deprived feel”, I think it highlights the utility of iMedix: filtering out all the noise and misinformation in online health information and presenting a clean, uncluttered and well-organized health search results page.

Conclusion

I really like iMedix and think it’s a great service that will complement the emerging use of of PHRs and genetic testing. As Susannah Fox described in the The Plausible Promise of Participatory Medicine:

For those internet users who are supplementing their doctor’s advice with health information found online, search is the first stop for most e-patients. Search is the de facto second opinion in the United States and search results often include user-generated content such as blogs, discussion groups, and Wikipedia.

Social media is not just stumbled upon by searchers; it is a starting point for many people. This trend is hard to measure since a lot of user-generated content has become “wallpaper” technology for many people — they absorb it without noticing it. But community is powerful and always has been. Technology makes this basic instinct easier to fulfill.

I’ve written previously about the Trust and Credibility of Healthcare Blogs. Indeed, I think about the credibility and reliability of internet-based health information all the time. It’s the principle reason why I include links and list references in all my articles. Although presentation trumps content online today, I think health seekers are becoming more savvy and looking beyond website design for impartial and verifiable sources of information. iMedix makes finding those sources of information easy.

iMedix has been in beta for 10 months. In a May 2008 interview with CenterNetworks, iMedix co-founder and CEO Amir Leitersdorf said that the healthcare-community site had more than 500,000 users each month and, with the help of the iMedix community, had ranked and re-organized more than 20 million health articles [3]. In July 2008, the company announced its first major media partnership and will be powering the search capabilities of PARADE.com’s health section [4]. It will be interesting to see how iMedix develops over the next year as its user base continues to grow and mature.

References

1. Pew Internet & American Life Project Tracking surveys. March 2000 – May 2008. Pew Internet & American Life Project. Last updated: July 22, 2008. Accessed 2008 Oct 12.
2. iMedix Unveils Community-Powered Health Search Engine. Reuters. 2007 Dec 10.
3. Interview With iMedix’s CEO Amir Leitersdorf and CMO Iri Amirav. CenterNetworks. 2008 May 20.
4. PARADE.com Partners With iMedix to Enhance Health Portal. Reuters. 2008 Jul 23.

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• Highlight HEALTH 2.0 – Year in Review 2008
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March 25, 2008 will mark the American Diabetes Associations’ 20th annual American Diabetes Alert Day. As implied by “alert,” the day serves as a call to action for those individuals at risk to take the Association’s Diabetes Risk Test, and make an appointment with a healthcare provider if necessary.

Since 54 million Americans have pre-diabetes, it is crucial for those at risk to take heed from the American Diabetes Association’s Diabetes Alert Day. Those at risk include overweight individuals, those not leading an active lifestyle (not taking enough exercise), and those with a family history of diabetes. Furthermore, the American Diabetes Association recommends that people aged 45 and older be screened every three years (those at higher risk should seek screenings more regularly).

Since diabetes has no cure, affects nearly 20 million Americans (of these 6 million don’t know they have diabetes), and is the fifth leading cause of death by disease, the fear of testing positive for diabetes and the seemingly insurmountable lifestyle changes and health management requirements accompanying the disease can be quite daunting. Fortunately, the Web provides a wealth of information, and the interaction developments offered by Web 2.0 can make the quality of life of those living with diabetes a little better. With 5 — 10% of all Web searches being health related, the need for people to not only get health information, but also make it easy to access and interact with, is vital and reflects the evolving needs of Web users that Web 2.0 seeks to meet effectively.

Sites like RightHealth.com, Healia.com, Revolution Health or WebMD are excellent starting points to quickly get acquainted with the information surrounding the topic diabetes. Healia provides multi-dimensional filtered search results, whereas RightHealth algorithmically orders information from across the web and presents it in an easy-to-understand content format. Revolution Health, Web MD and RightHealth all blend the lines of information and community to offer multiple dimensions to getting information on diabetes.

From RightHealth, I learned a bulk of the facts I already mentioned in this posting, as well as what diabetes actually is: a life-long disease characterized by high blood sugar levels. The causes of diabetes can include too little insulin (the hormone the pancreas produces to manage blood sugar), a resistance to insulin, or a combination of both. Beyond this basic information, RightHealth also features easy-to-understand jump-offs to other sites, like Trusted Sources (organizations connected with diabetes that provide detailed information about the disease), and an Explore section that gives a snapshot of the language and topics used to understand diabetes.

So Health 2.0 makes getting or understanding information about dense topics easier, but that’s just the beginning. A new site, Mamaherb.com bills itself as a way ” … to find natural treatments that can really help,” by fostering a community where users share stories about what alternative treatment options have worked for them. For diabetes sufferers that want to explore homeopathic remedies, Mamaherb is an invaluable resource. A search on “diabetes” showed that people had moderate success with such natural remedies as bilberry juice, buckwheat tea, broccoli extract and buchu leaves. Where else could you get this type of deep information easily?

The key to better health for diabetics is better control over the disease by carefully monitoring their blood sugar levels. This might sound simple, but it can be surprisingly complex. Fortunately, there is Sugarstats.com, which provides an interface to, “track, monitor, and share [your] blood sugar levels and other key statistics to help manage your diabetes online.” With timelines and graphs, it becomes easier and more accessible for a diabetic to manage the trends in their blood sugar levels and target ways to reduce blood sugar levels.

The touchstone of Web 2.0 is the user. While there are the mega sites like Facebook and MySpace where one could find other diabetics to share stories and advice, there are also even more targeted community sites which serve specifically the health or diabetic communities. iMedix.com is a place where users can rate medical articles that have helped them (like Digg meets Health) and chat with other people that share similar interests. When I searched iMedix for “diabetes,” I was told that there were three people online who I could chat with and around 500 offline that also share an interest and want to talk about diabetes. Another valuable resource was icyou.com, where users post health videos, which was a great way to cut through non-health-related videos you might find on mega sites like YouTube.com. But perhaps the most valuable resource was tudiabetes.com, which is a rich and vibrant community site committed to those afflicted with or touched by diabetes.

With such resources available today with the advent of Health 2.0, and by extension Diabetes 2.0, living life with diabetes just got a little bit easier.

About the author: Matthew Krajewski is a writer for The Kosmix RightHealth Blog, which uses information obtained through the RightHealth search engine to provide insightful posts about health-related news and issues.

Additional Health 2.0, Patient Social Networks and Diabetes resources are listed in the Highlight HEALTH Web Directory.

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• iMedix: Reliable Health Search and Patient-to-patient Social Network
• YouTube as a Source of Health Misinformation
• Social Networks and Health

Unfortunately, with all the reliable health information online, an equal or greater amount of misinformation also exists. An article in the Economist last year discussed the exponential increase in user-generated content, encouraged by sites such as YouTube, Facebook and Wikipedia, and its affect on healthcare [3]. The article concluded by quoting a professor at Harvard Medical School:

Many doctors, he says, “don’t get the wisdom of crowds.” But he thinks the combined knowledge of a crowd of his patients would be far greater than his own.

However, the trouble with “The Wisdom of Crowds” or “Crowdsourcing” is that a group of people connected by a network doesn’t necessarily mean they will work together as or more effectively than in traditional organizations.

… Quite simply, not all crowds are wise.

In his book “The Wisdom of Crowds”, James Surowiecki wrote the following [4]:

The smartest groups are made up of people with diverse perspectives who are able to stay independent of each other. Independence doesn’t imply rationality or impartiality. You can be biased and irrational, but as long as you’re independent, you won’t make the group any dumber.

A study published in the Journal of the American Medical Association examined “The Wisdom of Crowds” by evaluating YouTube as a source of information on immunization [5]. University of Toronto researchers searched YouTube using the keywords “vaccination” and “immunization”, and measured users interaction with the videos using view counts and viewer reviews indicated by the star-rating system. Scientists evaluated 153 videos:

• 73 (48%) of the videos were positive, meaning the central message of the video supported immunization (e.g. described the benefits and safety of immunizing, described immunization as a social good, or encouraged people to receive immunizations).
• 49 (32%) of the videos were negative, meaning the central message of the video portrayed immunization negatively (e.g. emphasized the risk of immunization, advocated against immunizing, promoted distrust in vaccine science, made allegations of conspiracy or collusion between supporters of vaccination and manufacturers).
• 31 (20%) of the videos were ambiguous, meaning the video contained either a debate or was ambivalent.

Although almost half the videos were positive and only 20% were negative, compared with positive videos, negative videos were more likely to receive a rating, had a higher mean star rating and more views.

The videos were then rated for scientific accuracy based on the 2006 Canadian Immunization Guide, which has recommendations similar to those from the American Centers for Disease Control and Prevention. None of the positive videos contradicted the Guide. However, nearly half of the negative videos (22 of 49; 45%) carried messages that did contradict the Guide. These included messages that general childhood immunization can cause autism and that scentific research supports the link between thimerosal and autism. However, perhaps the most striking data from the study was that, among the positive videos, public service announcements received the lowest mean ratings and the fewest views.

The authors comment at the end of the study that:

The video ratings and view counts suggest the presence of a community of YouTube users critical of immunization.

And that community of YouTube users is growing rapidly. According to a December 2007 report by the Pew Internet & American Life Project, the typical share of internet users going to video sites was nearly twice as large as it was in December 2006 [6].

With the pervasiveness of blogs and RSS on the Internet today, content has become a commodity. Indeed, “information overload” tends to be everywhere. With too much information and not enough time, capturing an audience’s attention is paramount. Everyone has heard the cliché: “Content is King”. In the age of Web 2.0 and YouTube, packaging, not content, has clearly become King. This is the message public health authorities and others trying to communicate accurate health information need to pay attention to: it’s not just what you say, it’s how it’s presented.

Are you a Twitter user? Tweet this!

References

1. Fox S and Fallows D. Internet Health Resources: Health searches and email have become more commonplace, but there is room for improvement in searches and overall Internet access. Pew Internet & American Life Project. 2003 July 16.
2. Research Reveals That Internet Has Become Primary Means by Which Consumers Access Health Information. WebMD press release. 2003 Feb 10.
3. Health 2.0. The Economist. 2007 Sep 6.
4. Suroweicki J. (2004). The Wisdom of Crowds: Why the Many Are Smarter Than the Few and How Collective Wisdom Shapes Business, Economies, Societies and Nations. Boston: Little, Brown, Boston.
5. Keelan et al. YouTube as a source of information on immunization: a content analysis. JAMA. 2007 Dec 5;298(21):2482-4. DOI: 10.1001/jama.298.21.2482
   View abstract
6. Rainie L. Increased Use of Video-sharing Sites. Pew Internet & American Life Project. 2008 Jan 9.

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Why the increased attention?

When a patient receives medical interventions, there may be unintended health effects in that patient’s social network, i.e. other people to whom that patient is connected. For example, treating a heart attack may cause the patient’s children to change their dietary habits, improving their health and possibly improving their future medical outlook. Knee replacement surgery may allow a wife to better care for her husband, thus improving his health. Helping someone lose weight may influence that persons friends to also lose weight. Indeed, recent scientific studies, two of which are described below, are finding that social networks are quite relevant to health.

Social network studies and health

The prevelance of obesity in the U.S. is increasing [3]. An analysis of the nature and extent of the person-to-person spread of obesity was published recently with surprising results [4]. Researchers found that an individual’s chances of becoming obese increased by 57% if they had a friend who became obese. However, the type of friendship was an important variable: persons in closer, mutual friendships have more of an effect on each other than persons in other types of friendships. Adult siblings also influenced one another, increasing the chance of obesity by 40%. The risk of becoming obese increased by 37% if an individual’s spouse became obese.

Additionally, the sex of friends and siblings was also important [4]:

… pairs of friends and siblings of the same sex appeared to have more influence on the weight gain of each other than did pairs of friends and siblings of the opposite sex. This finding also provides support for the social nature of any induction of obesity, since it seems likely that people are influenced more by those they resemble than by those they do not. Conversely, spouses, who share much of their physical environment, may not affect each other’s weight gain as much as mutual friends do; in the case of spouses, the opposite-sex effects and friendship effects may counteract each another.

The authors note that while connected individuals may share common exposure elements (e.g. environmental factors, experience of simultaneous events, genes) that cause people to gain or lose weight simultaneously, their observations suggest an important role for a process involving the introduction and person-to-person spread of obesity. The study results suggest that the acceptance of obesity can spread through social networks. The change in the acceptance of obesity may alter behavior and affect a person’s food consumption.

Another recent study examined how a spouse’s illness or death affects the subsequent risk of death of their partner. Perhaps the strongest link in a social network, a spouse’s death was found to increase their partner’s chance of premature death by about 20 percent [5]. In fact, the danger to a partner can be much higher within the first month of a spouse’s hospitalization that marks the beginning of a serious or chronic illness. According to the study authors, rising risk months or years later may reflect a decrease in social support.

Social network ties may indeed have unintended health effects in other people to whom a patient is connected. The effects may be positive or negative. An editorial in the British Journal of Medicine [1] a few years ago suggested that:

Doctors, trialists, patients, or policy makers might see reason to take them [the sum of the direct health outcome in the patient and the collateral health effects in others] into account when choosing treatment or evaluating benefit.

Web 2.0, healthcare and medicine

The first incarnation of the web, which we now call web 1.0, has been summed up as essentially all about commerce, while web 2.0 is almost all about people and participation [6]. Web 2.0 services, including social networking services, blogs, collaborative filtering, social bookmarking, taging, instant messaging and online tools specifically designed for health search will likely change healthcare as we know it today. These same technologies are expected to play an important role in the future of medicine for physicians and scientists as well as patients. Indeed, a recent review of emerging web 2.0 social networking technologies and software [7] suggests that:

… careful thinking, testing and evaluation research are still needed in order to establish ‘best practice models’ for leveraging these emerging technologies to boost our teaching and learning productivity, foster stronger ‘communities of practice’, and support continuing medical education/professional development (CME/CPD) and patient education.

A blog carnival highlighting posts between web 2.0 and medicine, Medicine 2.0, is currently published biweekly. Still a term to be precisely defined, Medicine 2.0 is the science of maintaining and/or restoring human health through the study, diagnosis and treatment of patients utilizing web 2.0 internet-based services, including web-based community sites, blogs, wikis, social bookmarking, folksonomies (tagging) and Really Simple Syndication (RSS), to collaborate, exchange information and share knowledge. Physicians, nurses, medical students and health researchers who consume web media can actively participate in the creation and distribution of content, helping to customize information and technology for their own purposes.

The tenth, jubilee edition of the Medicine 2.0 blog carnival was hosted right here on the Highlight HEALTH Web Directory Blog. There, you’ll find links to many articles that discuss Web 2.0 in health and medicine.

Health 2.0 – social networking services and health

More generally, web 2.0 empowers everyone in healthcare. The Health 2.0 wiki defines Health 2.0 as:

New concept of healthcare wherein all the constituents (patients, physicians, providers, and payers) focus on healthcare value (outcomes/price) and use competition at the medical condition level over the full cycle of care as the catalyst for improving the safety, efficiency, and quality of health care.

In this context, Health 2.0 extends far beyond social networking. However, according to The Health Care Blog,

Our definition [of Health 2.0] is currently focusing on user-generated aspects of Web 2.0 within health care but not directly interacting with the mainstream health care system.

This means things like health search, communities (online social networks) and tools for individual and group consumer use.

What are online social networks? An online social network is a relatively new type of virtual community that is designed to allow members to build relationships with other members of the community. Web 2.0 empowers users, encouraging members to create content online to be shared with other readers. Users can post information on their profile page that is accessible by other members of the community. Additionally, these social networks also typically offer the ability to create additional personal web pages — blogs, image galleries, video clips — that help to build relationships with other members.

According to a survey by Manhattan Research, 9.9 million consumers, in addition to reading weblogs, regularly post health information online and learn from each other [8]. People are clearly using these tools.

Over the coming months, a series of review articles will be published here on the Highlight HEALTH Web Directory Blog describing a number health-focused social networks, what they have to offer and how they can affect your health. New material will also be announced on Highlight HEALTH.

If there’s a social health network you’re interested in learning more about, send me a message and let me know.

References

1. Christakis NA. Social networks and collateral health effects. BMJ. 2004 Jul 24;329(7459):184-5.
   View abstract
2. Barabási AL. Network medicine–from obesity to the “diseasome”. N Engl J Med. 2007 Jul 26;357(4):404-7. Epub 2007 Jul 25.
   View abstract
3. The United Health Foundation’s 2006 edition of “America’s Health Rankings: A Call to Action for People and Their Communities”.
4. Christakis and Fowler. The spread of obesity in a large social network over 32 years. N Engl J Med. 2007 Jul 26;357(4):370-9. Epub 2007 Jul 25.
   View abstract
5. Christakis and Allison. Mortality after the hospitalization of a spouse. N Engl J Med. 2006 Feb 16;354(7):719-30.
   View abstract
6. Barsky and Purdon. Introducing Web 2.0: social networking and social bookmarking for health librarians. Journal of Canadian Health Library Association 2006, 27, 7-8.
7. Kamel Boulos and Wheeler. The emerging Web 2.0 social software: an enabling suite of sociable technologies in health and health care education. Health Info Libr J. 2007 Mar;24(1):2-23.
   View abstract
8. Forecasting the Future: Consumers 2010. Manhattan Research.

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• Highlight HEALTH 2.0 – Year in Review 2008
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