Yesterday and today, the FDA is listening to stakeholders at the nexus of social media and health relate their perspectives on the benefits of social media in health. The topic in its full title is “Promotion of FDA-Regulated Medical Products Using the Internet and Social Media Tools.” This is a long-anticipated meeting that’s discussing the benefits, drawbacks and true stories about the Internet in health — in particular, related to pharmaceuticals and medical devices.
Full coverage online has been provided by igniteHealth, a health marketing agency, that’s tracking all tweets and presentations from the event.
Representatives testified from a range of stakeholder organizations including pharmaceutical manufacturers, health infomediaries, marketing companies, social networks, patient advocates, industry associations. A full list of those who testified can be found here.
This morning, a health citizen, representing herself — not an organization or company — provided testimony that was most persuasive and at the same time truly moving; Kim Witczak talked about her husband, Woody, who had hung himself while following doctor’s instructions to take a prescription of anti-depressants. This was six years ago, in the era before black-box warnings were implemented.
Kim has been part of the movement toward drug safety and patient participation. Her website, Woody Matters, is dedicated both to the memory of her husband and to providing helpful resources and support to people managing decisions around prescription drugs — especially anti-depressants.
Kim’s message is that health citizens need full access to information about health products and services. The Internet is the logical, practical locus for that information.
One particularly crisp and informative presentation was offered by WEGO Health, a health portal founded by Jack Barrette who had previously nurtured Yahoo!’s health strategy. He co-presented with his colleague, Bob Brooks, who directs product development at the company.
WEGO conducted a social media survey among 162 health activist panelists that participate on the site. Consider this group ultra-engaged health citizens who ‘get’ the role that social media play in health and health care. Jack calls these “power users online.” Bob told the FDA panel that WEGO’s activists are the 10% of health citizens who create content for 90% of all health citizens.
The graph above shows a key question in WEGO’s survey, which was: “Does the use of social media by Health Care Companies help people to understand important health issues?” Most engaged health citizens say, “Yes,” especially for four key aspects of health communication: to provide product updates, to bring accurate information into conversations, to address FAQs, and to add professional expertise. All of these, in the context of conversations.
To be credible and trustworthy in these conversations, product and service companies have an obligation to the community to correct misinformation about the products, and to follow regulations, WEGO found. Overall, health activists believe that the FDA should work to tailor regulations to the “practical realities of social media.”
Health Populi’s Hot Points: Aaron Krinsky of VeoMed, which provides technical platforms for social media in and beyond the health vertical, testified that, “we are moving from monological to a dialogical, participatory model in health.”
The story of Woody and Kim, and the activists in WEGO Health, all understand the practical realities of social media. 74% of the WEGO activists agree that regulation of health care companies’ participation in Internet and social media needs to be tailored to the unique attributes of these channels. Furthermore, 2 in 3 health citizens agree that open Internet and social media conversation between health companies and people online is valuable, and regulations should not prevent those open conversations.
In putting together recommendations based on these two days of testimony, the FDA would be wise to listen to the voices of patients-health citizens, who are already regularly using social media in their lives. Participatory health is the way forward, and the Internet is the bridge that’s bringing stakeholders and patients together.