Last year, Phil Baumann started CareVocate Strategies, offering organizations personalized, professional and focused strategic guidance on how to understand their relationship with social technologies and communities, and how to best interact with their customers.

In July 2010, Phil started Health Is Social, a website where the healthcare and life sciences learn how to integrate digital and social media into their strategies. I had the opportunity to talk one-on-one with Phil Baumann about CareVocate Strategies, Health Is Social and the future of social media in healthcare. Last month, Phil was also recently invited to be on the Board of Advisors for Mayo Clinic Center for Social Media.

Over the past four years, Berci has accomplished many things. In 2009, he started a Ph.D. in clinical genomics after graduating with an M.D. from the University of Debrecen in Hungary. From his work at Scienceroll, he has been invited to lecture on medicine in the Web 2.0 era at several clinics and departments at the University of Debrecen, and has presented at several medical conferences around the world.

In 2008, Berci launched the first university credit course for medical students that focuses on Web 2.0 and medicine (med20course.wordpress.com). He also founded Webicina.com, the world’s first medical Web 2.0 guidance service. Webicina aims to ease the work of physicians and scientists by recommending useful tools and sites and by presenting them the new world of Web 2.0. Just last week, Webicina launched its 65th medical topic spanning 15 languages on medicine.

I’ve known Berci Mesko since 2006 and we recently had a chance to talk about Scienceroll, Webicina and his professional path in the Web 2.0 era.

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.

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.

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 focused on new ideas 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. Highlight HEALTH 2.0 is also optimized for 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!

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 is a research information technologist for a health network in Oregon and is also Web administrator of the grants and scholarship listing service ScanGrants.

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.

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.

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.