Tag Archives: health 2.0

Crowdsourcing Our Health – Using Social Media to Educate and Unite the Public

March 23, 2009

35 Comments

“Social media on the Internet are empowering, engaging, and educating consumers and providers in health care.  This movement, known as Health 2.0, can be defined as: the use of social software and its ability to promote collaboration between patients, their caregivers, medical professionals, and other stakeholders in health.”

— Jane Sarasohn-Kahn, M.A., M.H.S.A, THINK-Health

Three different things happened to me last week that got me thinking about this concept of Health 2.0.  First, my colleague Jacque Brown started participating in the weekly Healthcomm chats on Twitter, I attended a meeting with the Center for Health Transformation, and I read this fantastic post by Ben Parr on Mashable.

Americans are increasingly relying on the Internet to find health information and connect with other people in similar situations.  According to the April

Source: iCrossing, How America Searches: Health and Wellness

Source: iCrossing, How America Searches: Health and Wellness

2008, “The Wisdom of Patients: Healthcare Meets Online Social Media,” report, more than 60% of Americans have used the Internet to find health information, and as of January 2008, the Internet rivaled physicians as the leading source for health information.  The 2008 Edelman Trust Barometer also determined that people tend to trust “a person like me” more than authority figures from business, government, and media.

Combine this with the fact that research shows that a stable and supportive social network improves health outcomes for people with a wide range of conditions, from the common cold to cancer, and the potential for social media to fundamentally change how we view our healthcare, how we view our health, is phenomenal.

Social media is bridging the gap between health and healthcare.  Imagine a world where your doctor calls you to make sure everything is ok after noticing an increase in the number of your Facebook status updates where you said you have a headache.  What if you could screen new doctors by viewing past surgeries of theirs on YouTube or by reading their blogs?  What if your entire medical history was available, securely, online?   Imagine being able to easily track, monitor, and research every illness, pain, cold, and headache you’ve ever had – you think we’d come across some interesting (and possibly life-saving) trends??

Through websites like Google Health, WebMD, and PatientsLikeMe, initiatives like Twit2Fit and the weekly HealthComm chats, and many other examples, we’re already starting to realize some of these benefits.  But to truly transform our country’s health, our government needs to get involved as well.

The Department of Health and Human Services’ new Center for New Media is a good start, but it’s but one small step toward Health 2.0.  Before we can truly realize Health 2.0 (can’t we think of term that doesn’t use the “2.0” moniker?), there are several very valid issues, along with several perceived barriers.

  • Privacy – The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule provides federal protections for personal health information; However, personal health records (PHRs) shared outside of covered entities online are not protected by HIPAA.
  • Security – 13% of respondents to a Healthcare Information and Management Systems Society (HIMSS) survey revealed their facility had experienced a data breach.
  • AccessibilitySection 508 requires that Federal agencies’ electronic and information technology is accessible to people with disabilities.
  • Resistance to Change – Healthcare is perhaps the oldest, largest, and most complex institution in the United States, and stakeholders from every aspect of the industry will have to adapt to a new way of doing business.

All very real issues, right?  However, as much as some people would like us to believe, these issues are NOT barriers to Health 2.0.  Our Government can and has overcome these issues before, but for it to continue, we must address these issues first. This is what Jacque likes to call the four stages of Health 2.0 denial.

  1. This is an invasion of privacy! – However, the “entities” mentioned above are ensuring HIPAA compliance and the caretakers who will more than likely be on the receiving end of PHR sharing already know of an individual’s medical conditions. Google has taken additional steps to ensure privacy by only making links available through the direct email address through which the notification was sent and making the links expire after 30 days.
  2. What about information security?!? – If the intelligence community can use social media to communicate and collaborate about our nation’s intelligence and we’re comfortable with our entire banking records now available online, I think we can figure out how to make our health records accessible AND secure.
  3. What about people who don’t have the internet? – 80% of adults in the US have mobile phones, and some countries are already piloting government-provided phones for health reasons.
  4. But this is just plain scary – When I first logged on to Google Health, I was overwhelmed at seeing my mortality displayed in front of me. Likewise, physicians and other groups are used to doing things the way they feel comfortable. Even if we do see the value in social media, it’s a transformational change that is going to take time and both formal and informal support to embrace.

Health 2.0 isn’t going to happen overnight – it’s going to take the time, dedication, resources, and cooperation of the general public, our government, Big Pharma, insurance providers, first responders, caregivers, and many others to make it happen.

If you’re interested in learning more about Health 2.0, there are much more qualified people than me who are out there making this a reality – I’m just someone who’s keenly interested in doing what I can to make it happen.

Additional Resources:

There are MANY more – the links above are simply my go-to resources.  If you have more resources, please add them here in the comments so that others may benefit too!

Continue reading...