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.

Related articles

• Highlight HEALTH 2.0 – Year in Review 2008
• YouTube as a Source of Health Misinformation
• Social Networks and Health
• Health 2.0 Highlights: February 9th, 2009
• Medicine 2.0 #10 – Medicine and the Second Generation of Internet-based Services

Three websites make up the Highlight HEALTH Network:

• Highlight HEALTH 2.0
• Highlight HEALTH
• The Highlight HEALTH Web Directory

Each of these sites has a different purpose. Highlight HEALTH 2.0 is a group effort to follow the use of Web 2.0 in health and medicine (if you’re interested in writing a review about a social health network or co-blogging about the integration of Web 2.0 technologies into health and medicine, please let us know). Highlight HEALTH promotes advances in biomedical research to encourage health literacy. Lastly, the Highlight HEALTH Web Directory is an online reference guide for reliable health and medical information.

There are more ways than ever to connect with the Highlight HEALTH Network, including email/RSS, Twitter and Facebook. If you have an internet-enabled cell phone, Highlight HEALTH 2.0 can be accessed via the mobile web.

Top 5 most popular articles

Here are the most popular articles for 2008 (top 5 based on the number of page views/number of days posted):

1. Online Patient Community Battle for Survival: MDJunction
2. iMedix: Reliable Health Search and Patient-to-patient Social Network
3. Mednar Search … and Hope said, “It is good.”
4. Following the Tweets of Health
5. Core Biomedical Research Software and Web 2.0 Tools

Thank you and Best of Health in the coming year!

Related articles

• Online Patient Community Battle for Survival: MDJunction
• Social Networks and Health
• Following the Tweets of Health
• iMedix: Reliable Health Search and Patient-to-patient Social Network
• YouTube as a Source of Health Misinformation

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.

Related articles

• Social Networks and Health
• Highlight HEALTH 2.0 – Year in Review 2008
• Medicine 2.0 #10 – Medicine and the Second Generation of Internet-based Services
• Sharing Genes on the Social Web: PatientsLikeMe ALS Genetics Search Engine
• Health 2.0 Highlights: February 9th, 2009

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.

Related articles

• Medicine 2.0 #10 – Medicine and the Second Generation of Internet-based Services
• Highlight HEALTH 2.0 – Year in Review 2008
• YouTube as a Source of Health Misinformation
• Sharing Genes on the Social Web: PatientsLikeMe ALS Genetics Search Engine
• Following the Tweets of Health