If you’ve ever searched for health and wellness information online, you know that finding the right resources for your unique issue can be a long and frustrating process. Sites like WebMD do a great job of meeting textbook health needs, but they simply aren’t equipped to handle the specific nuances of many health inquiries or the unique personalities and interests of health searchers.
Recently, consumers have begun to take control of their search for health and wellness information by forming thousands of ad-hoc Micro-Communities: communities based on unique, yet shared, aspects of health. Micro-Communities come in many forms (blogs, forums, social networks, support groups)—by focusing on specific, personalized alliances among users, Micro-Communities change the very nature, availability, and distribution of health information as we know it.
You Are Unique, But on the Web, You Are Not Alone.
If there’s one thing the web has taught us, it’s that while you may be unique, you are definitely not alone. Especially when it comes to health. If you search hard enough online, you can find health and wellness Micro-Communities for everything under the sun: Men and Post-Partum Depression, Lesbians with Breast Cancer, Soccer Moms and MRSA. There’s little question that we derive tremendous value from connecting to other people who are exactly like us and the web celebrates precisely these types of connections.
As Micro-Communities grow from tens to hundreds and now thousands of individuals, they’re fast becoming highly engaging and relevant places to find answers and support for any health or wellness challenge. Micro-Communities are engaging because they honor the fact that there’s a lot more to health and wellness than science and technology. They’re relevant because, in the real world, issues like co-conditions, health insurance, employment, income, age, gender, sexual orientation and ethnicity, to name but a few variables, play important roles in our health choices. Micro-Communities recognize the value and impact these factors have on our health.
The Real Potential of Micro-Communities
Have you ever wondered why content on most health websites looks so similar? The reason is it often comes from the same sources. For years, a small number of medical content providers (e.g., ADAM, Thomson Multum, FirstData) have licensed the same content to many sites. Few people challenged the authority of these content providers and it was cheaper for websites to license data than to build their own unique information resource. Enter Wikipedia. In less than 7 years, Wikipedia has exceeded over 2 million entries and has proven that user-generated content can be high quality and trustworthy.
In contrast to the often-static information from medical content providers, Micro-Communities have immense potential to create Wikipedia-like health and wellness knowledge that’s not only relevant and credible, but also highly personalized. For this to happen, all health stakeholders (not just consumers) will have to embrace the future of online Patient Education: a highly informative, constantly evolving online experience that engages patients and caregivers by recommending resources that are both specific and dynamic.
Patients and caregivers aren’t waiting for the medical community to get comfortable with the idea of online Patient Education. Instead, they’re using Web 2.0 tools to forge Micro-Communities, and they’re starting to take Patient Education into their own hands by finding, sharing and rating the best health and wellness information on the web.
The main challenge faced and posed by Micro-Communities is precisely what makes them compelling in the first place: they’re micro, a subset of a larger group of individuals (Pregnant Women over 40 ? All Pregnant Women). But to become truly credible and dynamic information sources—immune to dominance by only a handful of vocal members—Micro-Communities have to reach a size and scale that establish their stature as trustworthy and helpful resources. To do so, they need educated consumers and engaged professionals (those with the most knowledge and sensitivity to patient and caregiver needs) to contribute openly, honestly and regularly.
If there’s one thing the web has taught us, it’s that old models of thinking, of searching, and of communicating need to evolve or they risk becoming obsolete. Unfortunately, there remains a lot of fear attached to online medical information. Many online health publishers fear losing control over health information. Many doctors and other health professionals fear liability. Insurers fear transparency. Advertisers fear negative adjacency. And a diminishing segment of consumers fear loss of privacy. These stakeholders remain attached to old models of thinking (and old sources of revenue). By staying fearful, they jeopardize their ability to engage consumers in a meaningful way, and to mobilize the web to deliver nuanced, personalized and dynamic Patient Education.
Micro-Communities will truly flourish and reach their highest potential when more health stakeholders recognize that the fear of online health information is really a fear of change. Our medical system will be stretched to the limit in the coming decades, as there is less elbow-room in the waiting room. By recommending great online information and providing ongoing support, Micro-communities can’t fix healthcare in America, but they can make a difference. What more can we ask of them?
Carl Sandler is (predictably) the CEO of a new health site called PeoplesMD, where Micro-Communities create insiders’ guides to thousands of health and wellness topics. He can be reached at carl@peoplesmd.com.
I recently stumbled on a website called InSuggest (http://insuggest.com). It is a site that recommends websites based on an area of interest. I thought it could be helpful to our members so I took it for a test drive.
Right now, the site works in two ways. First, you enter in a web page and InSuggest recommends related pages. You can then filter the results by clicking on the sites you like. As you do this InSuggest gets a better idea of what you are looking for and offers more and more relevant sites.
The second way InSuggest recommends WebPages is through a Delicious account. If you enter in your or anyone’s Delicious account name the website will offer new suggestions to you based on the bookmarks in your Delicious account. This works best if you have very similar types of bookmarks in your account, otherwise you will get recommendations as diverse as your bookmark list.
I found the website to be easy to use. However, it didn’t always recommend the ‘best’ websites. For example, I asked for recommendations for WebMD and it referred me to IMDB, and Amazon. Overall I found the site easy to use, and it is a fun and pretty quick way of finding new sites out there. Its visual interface blows competitors like “http://similicio.us/” out of the water.
The best way to use it is to start by entering in a webpage that you like and then filtering through its suggestions. The Delicious search has great potential, but it could use some more work. It would be nice if you could select just a couple of tags from your account and InSuggest could recommend sites based on those tags.
If InSuggest was linked to my PeoplesMD profile in a similar way it is linked to Delicious, it could offer recommendations based on the links I've added to my own profile. Hopefully, there's a more open API coming ahead.
After reading a post about participatory medicine on e-patients, I started thinking about the power of online communities.
Communities meet a basic human need. Before the rise of the web, gathering in a community was restricted to physical establishments and bound by location. The web is now offering the ability for people to form communities that are not restricted by time or place. People can meet, gather, and share information and ideas at anytime, from anywhere. New community-based health websites are mostly empowering patients in making connections with others like them. Besides just finding that personal connection, members of a community also have a lot of knowledge to offer, because they went through the same experience.
On PeoplesMD, we are trying to nurture that characteristic of communities.
We are creating a space that enables people to find the best health information online using the power of community. We rely on our members to find the best web pages for each other’s issues and share that information with everyone.
As a result, people get recommendations for the best places on the web that help them deal with their health issues. That advice comes directly from people like them who want to take an active role in their health care and support others in their community.
As I was thinking about the possibilities of Twitter, I was wondering how Twitter could be used as a Social Health application. PF Anderson created a great slideshow that incorporates a large number of possible usages related to Health:
This made me think more about using Twitter as a tool for people with chronic conditions to stay in touch with each other and keep updated about each other's status. This past year, I was reviewing TheStatus , which is a free service that enables its users to create a private patient page (password-protected) that they share with their friends to keep them up to date about their condition, with both pictures and comments. Using Twitter for Social Health would be the Web 2.0 version of TheStatus, where privacy issues are less important and updates can be made much more simpler and easier, since the update process can be done via text messaging rather than through a web-only interface.
Another service that came up recently is Plurk, which is a more visual Twitter clone that offers a couple of additional features like moods. Sites like DailyStrenght incorporate the idea of moods into their profiles as well, and have been quite successful with it. Personally, privacy issues are not that relevant for me, but I can understand how they could be when people are revealing status updates about their health. A private version of Twitter for health might be more successful. Instead of asking people "what are you doing", a small modification could make Twittter a great tool for sharing health updates with your friends online: "How are you doing?"
What better way to kick off this blog than write my first post about the launch of Google Health. Google’s vision is to aggregate personal health information in one place, or a service that lets you store your Personal Health Record online.
What’s great about Google Health is that it conforms to the CCR standard, which stands for Continuity of Care Record. http://en.wikipedia.org/wiki/Continuity_of_Care_Record.
This standard is also used by Google’s biggest competitor, Microsoft’s Health Vault (http://www.healthvault.com), and assures that the data is stored and can be “computed” using a universal format.
The feature set of Google Health includes the ability to input your conditions and drugs, check multiple drugs for drug interactions, find a doctor based on your condition (this needs a little more work) and the ability to use third-party tools created by external developers.
It’s a little hard to enter all your condition into the system. To make the process easier, Google is partnering with several healthcare entities, which enable a user to import their health information from a third-party website automatically (https://www.google.com/health/directory?cat=importrecords).
Another one of Google Health’s exciting features, at least for me personally, is its list of health topics: https://www.google.com/health/ref/. For PeoplesMD, I’ve been researching a lot of “condition” information providers, and most of them struggle to find a good balance between accessibility of information and information overload. Google seems to have found a format that works really well, plus makes it available like no one else: through one page listing all the topic pages.
Big concerns about Google Health’s vision are privacy issues. In order for Google Health to grow, users need to have enough trust to store their most personal information online. Large parts of the discussion focus around Google Health’s exclusion from HIPPA. HIPPA stands for Health Insurance Portability and Accountability Act and was enacted by the US congress in 1996. Fred Trotter thinks it’s a good thing that services like Google Health are not covered by HIPAA, because our “ability to generate medical information has vastly outpaced our methods for handling that information”. Meaning the current ways of storing medical information and sharing them with all the different healthcare providers needs to be reworked (http://www.fredtrotter.com/2008/05/23/in-all-fairness/) In that respect, Google Health could actually be a useful tool that lets you control what parts of your medical data can be seen by different entities, just like Facebook lets you decide what part of your life is visible to different groups of people. Not everyone agrees with Fred. Nathan McFeters sees primarily the privacy risks of Google’s data storage: http://blogs.zdnet.com/security/?p=1166.
At the moment, Google is not making any money with Google Health (according to Marrisa Mayer at Google, http://www.thehealthcareblog.com/the_health_care_blog/2008/05/google-hea...). As the platform grows, it’ll be interesting to see if this situation continues. If people use Google Health to store online information, the urge to show targeted ads is big, considering the dollars pharma companies is willing to spend for targeted ads. On the plus side, the collective information stored on Google Health could provide great information for medical research, with the click of a button.
