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What would you say to policymakers who are discussing the implementation of a national health information infrastructure?

Here’s what I’d say: E-patients want access to tools and information.  Many will find what they need, many will not. You can help.

Some background:

The Office of the National Coordinator for Health Information Technology is holding a hearing on Friday, September 18, to review privacy and security issues before the Health IT Policy committee.

Check out the line-up for my panel, “Patient Choice, Control, and Segmentation of Health Information”:

Each person will have five minutes to get some essential points across and then engage in a discussion, so if you are really a health data geek, listen in starting at 8:30am Eastern.

Other panels will cover data stewardship, de-identification/re-identification, and transparency/accountability. I’m no expert on HIPAA or code, but yes, I will suggest that Paul Ohm’s article, “Broken Promises of Privacy,” be considered required reading for all the reasons I wrote about here.

My statement:

In the year 2000, the Pew Internet Project began surveying the American people about the social impact of the internet. Health care quickly emerged as a key area of study, driven by the fact that 6 in 10 American adults go online for health information and many report that they make health care decisions based on what they find. For shorthand, I call this group “e-patients.”

The Pew Internet Project’s most recent research shows that American adults have different expectations about access to information now than even just two years ago, partly due to the availability of new tools, partly due to mobile internet adoption, and partly due to a new zeitgeist.

In the early days of the internet, e-patients routed around doctors who told them not to go online by either changing doctors or going underground with their research. E-patients are moving out ahead once again, not waiting for policymakers to figure out the HIPAA implications of social media, but just getting out there and taking advantage of the tools available.

For example:

  • 59% of e-patients have consulted blog comments, hospital reviews, doctor reviews, and podcasts about health and health care.
  • 20% of e-patients have posted comments, reviews, photos, audio, video or tags related to health care.

However, Americans’ longstanding practices of consulting a health professional, a trusted friend, or a wise family member persist. When asked which sources they turn to for assistance, the internet comes in third (tied with books) behind asking a health professional and talking with friends or family members. There is no evidence that the internet is replacing health professionals, or Dr. Mom, but rather it is enabling a new way to connect to information and resources.

Broadband and wireless internet connections are driving the adoption of social media, allowing Americans to become used to being able to not only access, but share information anytime, anywhere. Fully 56% of American adults have accessed the internet via a wireless connection and when we include mobile devices in our definition of the internet user population, historical differences between white and African American adults are erased.  Mobile could be a game-changer for health and health care, so please be sure to include a discussion of wireless access in your deliberations.

Finally, our surveys find that the internet is increasingly helpful to American adults seeking health information.

  • 60% of e-patients (or 42% of all adults) say they or someone they know has been helped by following medical advice or health information found on the internet. That’s an increase from 2006 when 31% of e-patients (25% of all adults) said that.
  • 3% of e-patients say they or someone they know has been harmed by following medical advice or health information found on the internet, a number that has remained stable since 2006.

Millions of people are taking part in the online health revolution we first documented in 2000. Instead of restricting access to information that can aid health decisions, I urge you to consider the lessons from our data. E-patients want access to tools and information.  Many will find what they need, many will not. You can help.

(Please leave a comment if you have anything else you’d like me to share with the Health IT Policy committee.)


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