PatientsLikeMe is one of 10 biomedicine companies included in Technology Review’s 50 Most Innovative Companies (TR50) for 2012 [1].
Online Patient Community Battle for Survival: MDJunction
December 30, 2008 | by
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.
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.
iMedix: Reliable Health Search and Patient-to-patient Social Network
October 28, 2008 | by
The Internet is used by 75% of American adults to search for health or medical information online; 1 in 10 are searching for health information right now as you read this [1]. Indeed, the amount of information available on the Internet related to health and medicine is staggering. While much of it is credible, an equal or greater amount of misinformation also exists.
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
- 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.
- iMedix Unveils Community-Powered Health Search Engine. Reuters. 2007 Dec 10.
- Interview With iMedix’s CEO Amir Leitersdorf and CMO Iri Amirav. CenterNetworks. 2008 May 20.
- PARADE.com Partners With iMedix to Enhance Health Portal. Reuters. 2008 Jul 23.
