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.

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

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

Immediate Online Patient Community

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

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

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

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

Dead spaces, medical authority and user-generated content

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

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

Awareness ribbons

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

Conclusion

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

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

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

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The new study, presented last month at the 2008 annual meeting of the North American Primary Care Research Group [2], evaluated the differences in emotional and informational social support content in online communities for cancers with low and high survival rates.

The researchers analyzed over 3,500 messages from 587 individuals in eight online support communities located within Yahoo!Groups and the Association of Cancer Online Resources (ACOR) websites for four different types of cancer with low or high five-year survival rates. Across all communities, there was a greater amount of emotional support than informational support.

High survival rate communities contained a greater proportion of emotional support than low survival rate communities (65% vs. 55%). In contrast, low survival rate communities contained a greater proportion of informational support than high survival rate communities (33% vs. 25%).

Participants in the study were members of support communities for four different types of cancer: lung cancer, melanoma, pancreatic cancer and thyroid cancer. They participated in eight different online communities and were all reviewed under the same time period.

According to the primary author of the study, Lorraine Buis, Ph.D. [3]:

When primary care providers refer individuals to online communities for support, they should be aware that there might be differing amounts of support based on the survival rate of a particular cancer.

According to the National Cancer Institute’s Surveillance Epidemiology and End Results (SEER) Cancer Statistics Review, which reports the most recent cancer incidence, mortality, survival, prevalence and lifetime risk statistics, from 1975 to 2005 cancer patients with thyroid cancer and melanoma of the skin had high survival rates (96.6% and 91.2% respectively) while lung cancer and pancreatic cancer had low survival rates (12.1% and 5.1% respectively) [4].

In addition to helping patients, online support communities help family and friends cope with the struggles that cancer presents. This is the first study to assess the influence of cancer patient survival rates on social support content in online communities for cancer.

A number of patient social networks are listed in the Highlight HEALTH Web Directory.

References

1. Buis et al. Relationship between cancer survival rate and social support within online communities for cancer. 2008 Annual Meeting of the North American Primary Care Research Group, Rio Grande, Puerto Rico.
2. 2008 Annual Meeting of the North American Primary Care Research Group (NAPCRG) Program. 2008 Nov 15 — 18.
3. Cancer survival rates impact type of Web communities used by patients. University of Michigan Health System press release. 2008 Nov 18.
4. SEER Cancer Statistics Review, 1975-2005, Age-adjusted SEER Incidence and U.S. Death Rates and 5-year Relative Survival Rates, National Cancer Institute. Bethesda, MD, based on November 2007 SEER data submission, posted to the SEER web site, 2008.

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

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

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

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

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

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

• Follow the Highlight HEALTH Network
• Follow Walter Jessen

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

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

References

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

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

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

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

… Quite simply, not all crowds are wise.

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

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

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

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

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

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

The authors comment at the end of the study that:

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

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

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

Are you a Twitter user? Tweet this!

References

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

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Why the increased attention?

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

Social network studies and health

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

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

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

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

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

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

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

Web 2.0, healthcare and medicine

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

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

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

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

Health 2.0 – social networking services and health

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

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

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

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

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

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

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

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

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

References

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

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