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.

Just try keeping track of the plethora of players in the online patient community / health-focused social network scene. Many patient communities have been started (e.g. MDJunction) by entrepreneurs who were spurred to create their sites by the difficulties friends or relatives had in obtaining emotional and social support during prolonged battles with illness.

HopeCube is one such site. HopeCube, like its rivals Trusera and MDJunction, has virtually no presence of medical professionals (unlike the heavy presence of such at sites such as MedHelp). At HopeCube, there are a mere six MDs listed under the category “Health Professionals” and the others on that page were providers of the New Age variety (e.g. relationship counselors — misspelled on the site as “counseler” — and fitness trainers). The details on this limited number were sketchy and many of the links on the page were dead. One of the doctors listed is Dr. David Kim of Beverly Hills Plastic Surgery, which gives you an inkling of HopeCube’s target audience.

Rather interestingly, unlike the blog of Patients Like Me and that of OrganizedWisdom, which are slick marketing tools, HopeCube’s blog is a forum for HopeCube members who, incidentally, don’t seem to be into tagging their entries given that the vast majority of them fall under the unhelpful rubric “Uncategorized.” HopeCube’s blog appears to be the main method of participation for many of the members. But the participation is asymmetric in that the vast majority of entries have not elicited any comments.

HopeCube may not have the lineup of medical heavyweights that is a notable feature of MedHelp, but it does provide helpful links to authoritative sources. For instance, on the amyotrophic lateral sclerosis page the related links were to the Mayo Clinic, MedlinePlus and the ALS Association — all solid, reputable sources. There was also a handy pathway to recent stores on Neurology / Neuroscience News in the online news service, Medical News Today which is a very useful resource in and of itself and one which I have not seen on other consumer health sites or at rival online patient communities in particular.

But much of the rest of the site seems mundanely pre-Web 2.0 in many respects. Rather blah interface and much of the site is old-line discussion board question and answer stuff at the member to member level — a far cry from the medical authority-laden dialogues of MedHelp or of the longstanding easy camaraderie among the members of Patient Like Me. You just have to wonder when health consumers will say, “Enough already with one paragraph answers by Joe Average — I will just call my local public library or visit MedlinePlus.” I thought that maybe I was just not seeing a richer interactive experience because I had not registered, so I finally reluctantly did (which, admittedly, went smoothly enough). But I still didn’t see much that wowed me — the interactivity level of HopeCube is circa 2001.

I don’t think HopeCube has too bright a future and is pretty pedestrian on the whole. Those who want to get health information from other health consumers would be better off visiting the far livelier, content-rich Omgili Health.

Additional patient social networks 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.

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.