Alexander B. Howard (@digiphile) is the Government 2.0 Washington Correspondent for O’Reilly Media, where he reports on technology, open government and online civics. He will share open source technology news at theOSCON convention in Portland, Oregon, on July 19-23.
This March, a report on chronic disease and the Internet by the Pew Internet and American Life Project and the California HealthCare Foundation showed that people fighting such illnesses are using social media to find information and connect with others who suffer similar ailments.
While the research showed that people who have chronic illness are less likely, on average, to have Internet access, once they’re online they are more likely to blog about chronic disease and participate in online discussions or other forums. According to the report, “Living with chronic disease is also associated, once someone is online, with a greater likelihood to access user-generated health content such as blog posts, hospital reviews, doctor reviews, and podcasts. These resources allow an internet user to dive deeply into a health topic, using the internet as a communications tool, not simply an information vending machine.”
Finding the right balance between individual privacy rights and community benefit will, however, require online services to thread regulatory needles and provide clear guidance to users about how their information will be used. Below are five examples of online services, platforms or projects that are working to strike that balance, providing a means for patients and citizens to share their experiences.
1. Online Communities and Connections
Online forums where people voluntarily share data about symptoms, environmental conditions, sources of infection, mechanics of injury or other variables continue to grow, and there are now dozens of other social media health websites to explore.
As Claire Cain Miller wrote in the New York Times earlier this year, online social networks bridge gaps for the chronically ill. And as Stephanie Clifford wrote last year, online communities like Eons or MyWayVillage can provide a reason to “keep going” for elderly patients that are isolated by geography.
The same characteristics that make social media a meaningful way for distributed populations to communicate, extend social media’s utility to those searching for a community of people with similar health conditions. The poster child for this trend is PatientsLikeMe, which now has over 65,000 members. While patients turning to social media worries some doctors, their value to certain populations is substantial. As Clay Shirky observed recently in the Wall Street Journal: “PatientsLikeMe has assembled a larger group of sufferers of Lou Gehrig’s disease than any pharmaceutical agency in history, by appealing to the shared sense of seeking medical progress.” Similarly targeted websites, like social networks oriented towards diabetes patients, have also become increasingly popular.
Sharing information about personal health does carry inevitable privacy considerations for those whose conditions might expose them to discrimination in the workplace or a community. Hospitals, clinics and other entities that hold such medical data, for instance, operate under tough privacy restrictions. These restrictions govern the use and storage of data as mandated by the Health Insurance Portability and Accountability Act (HIPAA) of 1996. Thomas Goetz wrote eloquently about these tradeoffs in a 2008 New York Times Magazinefeature article about PatientsLikeMe, including the business model behind the site.
In aggregate, the potential benefits provided to fellow patients through analysis of such data may well outweigh those privacy risks, especially for those who suffer from diseases or conditions that traditional medical research has not paid great attention to. For instance, this spring Emily Singer reported in Technology Review thatPatientsLikeMe had predicted a drug outcome – before the medical journal Lancet Neurology published a study showing the same result.
2. Twitter, Telemedicine and Hello Health
As reported last year in the New York Times, medicine in the age of Twitter now incorporates social media that goes beyond stethoscopes and sterile waiting rooms. While some doctors won’t even answer patient emails, others have taken to social media with gusto, such as Dr. @PaulineChen, the surgeon who authored the article. Dr. Christian Sinclair, a physician from Kansas City Hospice, is another example. Dr. Sinclair tweets as@ctsinclair and blogs about palliative care on his blog.
A major challenge for Dr Chen and other physicians lies in the void of formal training for social media. Dr. Daniel Sands (@DrDannySands), a physician at Beth Israel Deaconess Medical Center in Boston, Mass. co-authoredthe first set of guidelines published on using e-mail in patient care in 1997. In a profoundly public medium, doctor-patient confidentiality isn’t in the prescription pad nor locked in the inbox. New practices that combine health information technology and social media are springing up that rely on the discretion of the physicians.Hello Health, a paperless practice based in Brooklyn, New York uses telemedicine, email, IM, video chats and Twitter to communicate with patients after an initial visit. Dr. @SeanKhozin and Dr. @JayParkinson, who practice at Hello Health, tweet frequently. Dr. Parkinson’s talk on the future of medicine from this spring’s Gov 2.0 Expo is embedded below:
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3. Socializing Community Health Data
This spring, the United States Department of Health and Human Services took a step towards making community health information as useful as weather data. When used to power health apps, the release of community health data could unlock business value similar to what happened with GPS data a generation ago.
Community health data is being mashed up by Google, integrated into Bing, and visualized by Palantir. It will also be the focus of an upcoming “Health 2.0 Developer Challenge,” featuring a series of code-a-thons and team competitions. It’s further spawned “Community Clash,” a Web-based game that engages players to compare healthcare statistics for different cities around the country. Community Clash includes a social media component that pulls in a “Health Twiver” based upon healthcare-related keywords from the geographic regions compared, adding a real-time window into the communities in question.
4. Healthcare Wikis
While Twitter, Foursquare and Facebook may be grabbing most of the social media headlines of the moment, relatively old forms of social media like wikis continue to play a major role in online healthcare communities. As Jenna Wortham reported in the New York Times last year, Medpedia is a collaborative encyclopedia for health care that combines information from medical professional with forums for engagement with consumers. Medpedia was created in association with Harvard Medical School, the Stanford School of Medicine, The University of Michigan Medical School, the UC Berkeley School of Public Health, and more than a hundred other health organizations around the world.
Launched in February 2009, the platform now has thousands of medical professionals contributing to its pages and has added many new features, including sections for clinical trials, answers, news alerts and analysis.
In late June 2010, Medpedia launched RareSpace, “an online knowledge sharing platform designed in partnership with the R.A.R.E. Project and the Children’s Rare Disease Network to advance research and share information about the rare childhood diseases that affect 22.5 million American families.”
5. Open Source and Connecting Healthcare Communities
Long before Friendster, Facebook, Twitter and MySpace connected hundreds of millions of people, listservs allowed distributed online communities to collaborate on open source projects like the code for the Apache Webserver software. Brian Behlendorf, one of the primary developers of Apache, started an electronic mailing list in the mid-90s to coordinate the work of the other programmers.
More than a decade later, Behlendorf is now involved in another ambitious project: Developing and expanding an open source software gateway that allows healthcare practitioners to exchange health-related information calledCONNECT. In 2010, those working on the project can use more than an electronic mailing list to collaborate; they also have access to a blog, developer forums, a wiki to submit code and an issue tracking dashboard for bugs.
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