In an amazing co-incidence just a day or two after the 2020 Summit raised the idea of the Healthbook the following press release arrived.
Social Media's Challenge to Traditional Health Care
Patients, Providers, Researchers, and Advocates Forge Online Connections
April 22, 2008
Social media on the Internet are empowering, engaging, and educating health care consumers and providers, according to a new report, The Wisdom of Patients: Health Care Meets Online Social Media, published by the California HealthCare Foundation (CHCF). "Innovative collaborations online among groups of patients, medical professionals, and other health care players are challenging the notion that health care happens only between a single patient and doctor in an exam room," said report author Jane Sarasohn-Kahn, M.A., M.H.S.A., a health economist, management consultant, and health blogger. "This movement is known as Health 2.0."
The Emerging Role of the Internet in Health Care
"The Internet plays a central role in finding health information," said Veenu Aulakh, M.P.H., CHCF senior program officer. "More consumers now go online for health information and support than consult their physicians. The Web is also becoming a platform for convening people with shared concerns and creating health information that is more relevant to consumers. CHCF is exploring the use of social media as a tool to help people manage chronic conditions." Social media include online communities, blogs, videos, wikis, and other formats for sharing information.
The role of the Web has evolved from the information-retrieval of "Web 1.0" to "Web 2.0," which allows people who are not necessarily technologically savvy to generate content. At the same time, social networks ranging from MySpace to specific disease-oriented sites are blossoming. According to the report, social networks in health are proliferating so rapidly that new services are already under development to help health consumers navigate through them.
"Consumers are well ahead of other health stakeholders in adopting social media in health," said Sarasohn-Kahn. "People with chronic conditions are sharing their stories with each other, not just for emotional support, but for the clinical knowledge they gain in an online community. Doctors are meeting online to share quandaries about challenging cases and solutions that work. And researchers are coming together with patients to learn about side effects in real-time to improve therapeutic regimens."
Examples of Health 2.0 Sites
Among the Health 2.0 sites discussed in the CHCF report is DiabetesMine, a blog started by a journalist with adult-onset Type 1 diabetes. Her target audience is people with diabetes, caregivers, providers, payers, and the health care industry. Another site is PatientsLikeMe, a social health network and online forum. The target audience is patients with ALS (amyotrophic lateral sclerosis), multiple sclerosis, Parkinson's disease, or HIV/AIDS, as well as related caregivers, providers, and researchers. People share personal data on prescription drug histories, side effects, and what works in managing their conditions. Its patient-reported dataset has been presented at scientific meetings and used in peer-reviewed research. Another site, WEGO Health, is a social health network and wiki. The target audience is "prosumers" (expert consumers) who want to dig deeper and with more specificity into health topics. For example, someone could search for videos about diet and lifestyle changes among African Americans with Type 2 diabetes.
In addition to specialized sites, more than 500 groups meet on Facebook to discuss diabetes; more than 2,000 chemotherapy-related photos are posted on Flickr; and some 36,000 YouTube pages are devoted to some aspect of surgery. And that is just a sample of the kind of interactive media related to health that exist for patients online.
Can the Sites Be Trusted?
The CHCF report examines the benefits and concerns regarding Health 2.0. While privacy concerns may prevent potential users from getting involved, the report notes that people in search of health information and support are often willing to trade off aspects of their privacy in exchange for valuable services, as long as the sites clearly state how personal health information is used. The report points out criticisms that content provided by non-expert individuals could lead to adverse effects or even death, while noting that social media proponents contend that misinformation doesn't remain posted for long, and that collective wisdom is, by its nature, self-correcting.
Are Social Media Sustainable and What Comes Next?
The report describes various Health 2.0 business models (such as data aggregation and sharing; information arbitrage; advertising; sponsorship; and integration into health care delivery systems) that offer the potential to make sites sustainable.
According to the report, the growing demand for transparency will drive the evolution of social media in health. Sarasohn-Kahn writes that "shining a light on the data by which payers and consumers make purchasing decisions can help drive more rational, cost-effective choices." She offers as examples new sites the combine consumer reviews, peer reviews, and empirical data on a doctor's quality. Another example is a new health plan model that claims to be the health equivalent of Travelocity. "Consumer-generated content in health has found a receptive audience in Web 2.0," said Sarasohn-Kahn. "Patient opinion leaders have emerged in many disease areas. They will become a key influence on other consumers and, increasingly, the organizations who serve them."
Additional Social Media and Health Resources
The report includes brief portraits of social media health pioneers. It also provides an extensive list of resources on Health 2.0, health social networks, health wikis, patient blogs, health podcasts, and health video-sharing sites.
Contact Information
Marcy Kates
California HealthCare Foundation
510.587.3162
The press release is found here:
http://www.chcf.org/press/view.cfm?itemID=133633
The full report can be downloaded from this page
The Wisdom of Patients: Health Care Meets Online Social Media
The full report is really well worth a download an browse – only being about 30 pages and having a useful bibliography and list of sites to visit.
The issue with the 2020 Healthbook proposal at this point is the lack of clarity with the proposal. All we have from the preliminary report is the following:
“Create a "Healthbook" (like Facebook) for Australians to take greater ownership of their health information and electronically share it with people they trust – for example their doctor, nurse or family members. Users could control their health “friends” and their level of access, share data as desired, and ask for real time advice on health issues. By 2020, this might include sharing your own genetic data with your doctor or family. This would put the individual squarely at the centre of the health system.”
Clearly the next step is to consider the various forms of social networking and the various forms of Personal Health Records and determine just what might be the best to keep the patient in the centre while involving the professionals and other more formal information sources e.g. Medicare Australia, Pathology labs and so on.
The issue could certainly, and should in my view, be considered as part of the development of the National E-Health Strategy.
Tomorrow a little more on the more standard PHRs.
David.
In August 2007, in one of his last speeches as federal health minister, Tony Abbott admitted that the statement made in his first speech in the portfolio in November 2003 that failure to establish an electronic patient record within five years would be an indictment against everyone in the system, including the government was a rashly declared standard.