Power To The (e) Patient!
11/16/2009
Hundreds of thousands of digital voices are taking medicine to the virtual streets. There's a new cause being fought in social media communities. Not unlike the grass root movement of the '60's this will also influence change but this time in the world of healthcare.
As we've seen with consumer and business brands ePatients are using the Internet for research and social media for peer-to-peer support. On the other side of the street some healthcare providers (physicians, nurses, physician assistants, etc.) are doing much the same. Blogs, social networks, Twitter, along with gated communities like Sermo -an only for docs world- are finding their way into the process of daily communication.
However, the healthcare eco system is complex and goes beyond those two populations to include government agencies like the FDA, Pharma and point of care providers (hospitals, medical centers, out patient facilities).
Simply put .. here lies their social media dilemma .. how to authentically (with no marketing spin) participate in the social discussions while maintaining public safety, patient privacy, transparency .. not to mention ensuring conversations are "people talk." From a lay person's perspective it sounds fairly simple; however, especially for pharma the social landscape can be a slippery slope.
Last week the FDA held a Public Hearing on Promotion of FDA-Regulated Medical Products Using the Internet and Social Media Tools. To their credit the FDA made the 2-day proceedings available to the pubic through live streams. The goal of the back-to-back 15-minute presentations from marketers, pharma companies, government agencies and media companies was to educate by responding to a series of predetermined questions from the FDA.
While some people seemed a bit self-serving, others presented carefully researched conclusions; and others offered specific solutions from creating a task force to developing widgets for adverse events (AE) to designing online advertising. Running in the background were people tweeting the hearing.#FDASM The commentary, often couched in humor (I learned a new buzz word from Mark Tosh : Data Smog), was as valuable to me as the formal proceedings.
From a marketer who has worked in healthcare, as well as, from a personal perspective here are my takeaways:
Monitoring
Some people felt pharmaceutical companies should be responsible for monitoring misinformation and AE comments .. according to pre determined guidelines. Others strongly felt that monitoring should not be mandated or as @rohitbhargava tweeted that brands should not be "cyber sleths." However, if Pharma does come across inaccurate data or patient concerns what should be the response protocol?
Customer Service and the ePatient
How to manage service relationship is an important issue that was addressed only slightly. Perhaps it was outside the scope. Consumer brands are setting expectations for fast, online responses to questions and concerns. My instincts tell me that this will be the next big area for digital/social media healthcare. There are many issues to be explored from: What does digital healthcare service mean? to: How to address questions in public forums. How are AEs addressed and misinformation corrected? Where to address those issues and when to participate in social networks.
To encourage patients to report AEs they must feel as though they are getting value back. How to encourage engagement and what constitutes "value" is critical to understand. All who are involved in caring for and serving ePatients must realize that it is not about the technology but developing a productive collaboration. Whatever means are used must be simple. Social media is about a new set of digital behaviors that begin and end with trust based on transparency.
The social media service relationships between ePatients and healthcare providers will grow in importance .. watch for it.
Physician/Patient Relationship
Most U.S. physicians like the idea of empowered patients who are knowledgeable about their conditions
Patients are utilizing digital resources, including social media, for pre treatment and post treatment
Docs remain the most trusted source of medical information
Pharma
Docs want information when they want it. Consumers want customer service. The big challenge is to correct misinformation without a self serving spin. Seems sad that would be an issue. I can't help but wonder if/how the social media culture will influence the culture of pharma.
FDA
Step into the social media world. Open a page on Facebook so the public will have easy access to information. Don't expect people to search to find you .. go where they are online. A benchmark for success should be sharing experiences vs. filling out forms. The FDA should take the lead in creating a participatory culture.
Consumer education will be critical to the success of this undertaking. Pharma could help with the out reach as could other providers. If creating consumer awaremess and understanding is not an integrated aspect the best of plans will fail.
Keep in mind that regulations should not get in the way of expected interaction (between pharma and customers and pharma and physicians.
Healthcare in social media has certainly come a long way (with miles to go) since I facilitated sessions at the Healthcare Blogging and Social Media Summits 2006-7.
The post about a conversation I had with a doc I met on a flight about blogs seems almost surreal. It went something like this .. The doc said to me - I don't want to give them that information. There's too much on the internet already. Great opportunity to make sure they have correct information, I replied. The old school doc volleyed a last remark, "I don't practice medicine that way."
My response back, "Perhaps you need to change the way you practice medicine. If I were you I'd keep on eye on blogs." Wonder if he changed his mind.
Sidebar: Thanks to Jean-Ah Kang, PharmD, Special Assistant to the Director for her gracious eMail. - There will be transcripts posted approximately 30 days after the conclusion of the public hearing, and the docket will have copies of the presentations/oral testimonies that can be requested from FDA. We would welcome any comments you would like to provide on these issues as our docket is open until February 28, 2010 - please consider submitting comments!
Resources
Story of Two ePatiens by Dr. Val Jones
hcsc - weeklytwitter chat on social media and healthcare
Marci Roth for the illustration
Update 11-18-09 Webcasts of the FDA hearing on the Internet and Social Media are available for next 30-days.
