Not Much Hope for HopeCube

This article was written by Hope Leman.

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.

hopecube-health-professionalsRather 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.

hopecube-questions-and-answersBut 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.

Online Patient Community Battle for Survival: MDJunction

This article was written by Hope Leman.

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.

mdjunction-homepageThis 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

mdjunction-awareness-ribbonsOne 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.


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.

Review of Mednar Search

This article was written by Hope Leman.

Mednar is here and it is good. Check it out medical librarians, public library staff, academic librarians who do life science searches, busy front-line clinicians, clinical researchers, medical school faculty, power searchers generally in the health sciences and anybody, indeed, who wants quick, authoritative results in health searching. Yet another impressive achievement of the firm Deep Web Technologies, which already has a stellar record of achievement providing the underlying technology of,, and the brand new Biznar, a free, publicly available business research site. Check that one out, too.

Why is the firm called Deep Web Technologies and what is federated search, which is its specialty? Federated search is simply the capacity to search several online resources at the same time. The Deep Web is also called “The Invisible Web” and consists of gray literature and similar hard-to find content, such as heavy duty science and medical databases that the average search engines don’t tend to provide results from. That is where Deep Web Technologies comes in. Professional societies and the big players in federally-funded science search rely on it. It delivers sleek, elegant interfaces and solid search results. I like its stuff a lot. That is why I am up at 4:23 a.m. playing with it rather than sleeping before I have to get ready for my day job at around 7 a.m. Good technology should be exciting and something that compels you to get out of bed to go seek information about subjects you care about. Therefore, scientists, medical people and people who are ill or who love someone who is driven to seek information should take a spin in Mednar and the other products of Deep Web Technologies. They are the must-have tools of today and tomorrow.

Okay, enough rhapsodizing (couldn’t help it — it is that good). Why do I like Mednar so much?

Well, as someone who works in a medical library and spends many happy hours working in the kingdom of medical search tools, PubMed, I am always interested in seeing what else is out there in health sciences search. One thing I liked right away about Mednar was how it easy it was to set up an email alert on the latest results on my subject of choice, in this case my consuming interest amyotrophic lateral sclerosis. I have been receiving daily updates of the latest research on that subject from Mednar and they are quite fascinating. Now that might some strike some as not particularly novel or exciting (think Google Alerts), but it is really surprising how few options one has in terms of current awareness of authoritative (where Google falls down) daily bulletins and it never hurts to supplement the services one can get from PubMed. The one glitch in the email alerts is that when I click on some of the options I am taken to the log-in page of a resource I may not subscribe to. But at least I get the title to work with and can use other avenues to learn more about an article I might never have learned about otherwise. And if you follow a rare disease or even a common one that is making your life miserable, you don’t want to run the risk of missing out on key developments.

In that regard, Mednar is an extremely useful complement to PubMed in that there is a lag time before the very latest articles get into PubMed. Everything is vetted to the nth degree before it enters the hallowed halls of PubMed and while that is desirable and necessary, it also prevents timely notice of interesting developments or awareness of perhaps ultimately insignificant but nonetheless interesting, thought-provoking developments. By contrast, Mednar include among its results EurekAlerts and identifies them by the institution (e.g. Brandeis University) or organization (e.g. the American Academy of Neurology) that the press release concerned is discussing so that you don’t click on something of little interest. That’s an excellent way to monitor where the centers of research activity are in certain medical conditions and an easy method of keeping up in an engaging, entertaining way on what is happening now instead of waiting for a meta-analysis to appear in PubMed two years hence. You can learn a lot from press releases. For instance, in my search through the EurekAlerts in my search on ALS I came across this result about a touching article in the Journal of Palliative Medicine, something I might not have encountered otherwise. What I want from a search engine is for it to tell me something I don’t already know or that I would not have learned about from one of its rivals. Mednar does all of that.

Additionally, Mednar provides results by author, which enables users to quickly determine who seems to be the leading authority in a given field or at least someone who has published quite a bit in it.

Mednar also is a forgiving, patient envirnoment. For instance, I tried “proteomics in nephrology” but that resulted in much extraneous stuff. I then tried just “proteomics nephrology” and got tons of useful material. That is the mark of a good search engine. If you bumble and fumble and get nothing, trying different wording improves matters. Mednar definitely is on its way to becoming an outstanding launch pad for medical subject searching and it easy to see why frugal but astute purchases of services for government scientific agencies, demanding overseers of the databases of scientific societies and university libraries turn to Deep Web Technologies for prowess in search technology. Those are not easy audiences to win over and it has consistently done that. This is the state-of-the-art stuff, folks.

I wish had the brains of its CEO, Abe Lederman. I am in jaw-dropping, stupefied awe at the general excellence of the products of his firm. Anything that saves all of us time as we hunt for relevant data amidst overwhelming amounts of information on every conceivable aspect of disease day after day catches my attention and it has been caught today by Mednar. It searches many databases that PubMed and NLM Gateway do not, let alone other commercial search engines. That alone is a public service and I fondly hope that Elsevier and Springer and the other sci-tech publishers will start to see the value in working with innovative superstars in search and enlist them to render their superb content searchable. My wallet is open to good stuff in the sciences if I can find it and Mednar helps me find it. It is up to the sci-tech publishers to decide if they want to find eager, paying consumers of their content by working with Mednar. In the meantime, Mednar is educating us all about databases that we didn’t even know existed. Edifying those of us who like to think we know everything is noble work.

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.

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

Diabetes 2.0

This article was written by Matthew Krajewski.

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.

searching-for-diabetes.jpgSites like,, 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, 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, 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. 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, where users post health videos, which was a great way to cut through non-health-related videos you might find on mega sites like But perhaps the most valuable resource was, 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.

Health Web 1.0, 2.0 and 3.0

This article was written by Matthew Krajewski.

If Web 1.0 was about being told what the best information for you was (like the flat top 10 results on Yahoo! or Google), then Web 2.0 is about giving more control to the individual and inviting them to participate in the world of information.

Letting users start conversations or organizing information to the benefit of the end user are two outputs of the Web 2.0 evolution. So what is Web 3.0?

health-search.jpgAn article in ReadWriteWeb recently attempted to define Web 3.0, the semantic web based on personalization and recommendation. Web 3.0 may become quite adept at trying to algorithmically match you romantically, like a modern version of the 1950s board game Mystery Date, and some companies have already made significant headway in recommendation and personalization, such as Pandora and their music recommendation jukebox-like interface.

Will health ever benefit from the semantic web? Perhaps. Nothing is impossible, but it’s hard to imagine a computer will ever know how to deal with queries like:

“I hurt and don’t know why.”
“Why won’t my wound heal?”
“Should I be worried about menstrual bleeding during pregnancy?”

These questions deal with the core physical nature of human beings and the nuances and language to express physical experience is so wide that Web 3.0 may never build the right bridge.

However, Web 2.0 — with intelligent interaction flow — can make answering the afore mentioned questions much easier. By categorizing the scary wilds of the web for an end user, it makes searching that much smoother.

Kosmix, the creators of RightHealth, have created a categorization technology that simplifies the web. This categorization of information is important for online health search, where the nature of queries can be intensely personal.

Asking a person concerned about his/her health to plough through homogenous search results is just plain cruel. Categorize the information, build your interaction flow around that categorization, and you’ve already helped make the mystery of a health question easier to understand. Web 2.0 puts the user or the user’s needs at the center of the product, at least when it’s done right.

Being smart about categorization and interaction flow is more than just dressing up search results. Standard search results will require a user to determine for themselves what is a trustworthy source and what is plain spam. RightHealth treats the categorization of health information much like how an editorial health site would treat their articles: insuring results are relevant, trustworthy and of value to the end user.

The user interaction associated with these valuable results is just as important, exploiting the value of Web 2.0 sensibility in order to be smarter about how health searchers interact with information to better understand their health. In Health Web 2.0, the user is just as important as the information they are trying to access. Building those bridges correctly is the way to effectively evaluate the quality of a Health 2.0 website.

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 search resources are listed in the Highlight HEALTH Web Directory.