Health IT Policy: E-patients want access

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.)


Posted in: medical records | policy issues | reforming hc





21 Responses to “Health IT Policy: E-patients want access”

  1. SusannahFox says:

    Tomorrow’s health privacy panel: Deborah Peel, John Rother, Marc Overhage & me. Details:

  2. SusannahFox says:

    @boltyboy 59% of e-patients have consulted health social media; 20% of e-patients have posted (see:

  3. ePatientDave says:

    Opportunity to be heard in DC *tomorrow*: @SusannahFox panelist in hi-level mtg Fri, wants YOUR thoughts

  4. Susannah,

    the goal has never been to supplant the doctors but to supplement the traditional I/O chain the patients have traditionally experienced with their doctors.

    By providing a growing number of tools specialized in knowledge/information surfacing the Internet has already allowed millions of patients to experience the benefits of direct patient engagement.

    And now, the new systems designed for data collection, data sharing and data integration are once again pushing the envelope.

    Just think how incredibly powerful innovations will be when we’ll be able to transparently fully integrate data into the conversations: “From Social Media to Social Data and Back!”

    It is just very sad that this revolution remains a societal phenomenon of the affluent and educated. To tackle this problem, let’s work actively to build the science behind what we do. And then demand that help be provided to help build either similar systems for the digitally disenfranchised.

  5. Susannah Fox says:

    Thanks, Gilles!

    I hadn’t planned to hit the access data hard tomorrow, but your comment is making me think that I have a responsibility to do so.

    Mobile is changing the dynamic among African Americans, erasing the differences between them and white adults when it comes to internet access. But pockets of people remain offline – people living with chronic conditions being one example. I’ll release new data soon showing that there has been no significant increase in the last two years among that population when it comes to internet access. And since they are likely to be older, they are not jumping on the wireless device bandwagon.

  6. I want innovation at a rate that resembles the rate of improvement in cell phones and iPods: I want to think, in 2011, that the healthcare tool I started using in 2009 is, well, “that’s SO 2009,” just the way many people think about their cell phones.

    Cell phones and iPods wouldn’t evolve nearly as fast without interoperability and content that flows easily between tools. So I want to get my hands on ALL my data, so *I* can submit it to whatever tools I want.

    I want to be able to check the accuracy of my data. All of it, including my billing records, which can be used against me.

    Ultimately, here’s what it comes down to: information about me is MY property. It’s MY life (nobody else’s) that can be shortened or lengthened by the quality and mobility of that data. Think about that for your own children!

    You bet I ought to be able to get my hands on all the data and proofread every last bit of it, show it to my own selected experts, and take it with me wherever I want.

  7. Susannah Fox says:

    Yes, I think I’m taking the “give them their damn data” seat on this panel.

    I’m not an advocate for any policy outcome, but it’s clear from our data that there are many, many people who agree with you and are looking for ways to connect with the best health information resources available to help themselves and their loved ones.

  8. Susannah,

    Yes, “mobile is changing the dynamic among African Americans, erasing the differences between them and white adults when it comes to internet access.”

    But we have no idea if the big change in Internet access is paralleled by a huge change in usage of the internet based medical resources that are available. I believe that the UX of many members of various minorities is still based on their lack of trust in the entire healthcare system.

    So my addition to your presentation would be as follows: “Consumers with diverse perspectives, circumstances, capacities, and experiences must be included in the design of, and have meaningful access to, evidence-based culturally sensitive e-health tools”

    BTW, this is quoted quasi-verbatim from ” Expanding the Reach and Impact of Consumer e-Health Tools June 2006″; DHHS

  9. Susannah Fox says:

    Ah yes, Cynthia Baur’s swan song at HHS – thanks for the reminder of that excellent document.

    And you are right about the fact that we only know that mobile has the *potential* to be important in reaching diverse populations. I am an optimist, which is why I need to listen to people with, well, diverse perspectives!

  10. […] Article Susannah Fox,, 17 September 2009 SHARETHIS.addEntry({ title: "Health IT Policy: E-patients want access", url: "" }); […]

  11. Susannah,
    It looks like I’m becoming a regular contributor to!

    Just a couple of thoughts for the ONC meeting tomorrow. I second the points made by Gilles and Dave. I focus on health “content”, which in today’s digital economy is inextricably connected to health IT. It’s obvious to me that “meaningful use” cannot be defined without discussing the content or data that flow between IT systems. Dave makes this points eloquently.

    I’d suggest emphasizing how e-patients can contribute to evidence-based medicine (EBM) and comparative effectiveness research (CER). As I’ve written in my comments about infodemiology on this site, patient-generated data represents a new pool of research data that has the potential to improve comparative effectiveness studies. ONC/HHS could help establish standards for data quality for patient-generated and outcomes data.

    One last point. A more concerted focus on patient education/health literacy is needed. And there needs to be a range of authoritative information available. Motivated e-patients need more than pamplets designed for the lowest-common denominator population. There’s lots of information published, but some is not accessible to non-medical professionals, some is expensive, and much of what is available to consumers is of questionnable value in large part because of the bias of the person or organization that publishes the information.

    In sum, I want to keep hammering on the point that meaningful use of health IT requires just as much focus on the “information” as it does the “technology”.

  12. arthurwlane says:

    Health IT Policy: E-patients want access:

  13. tedeytan says:

    @susannahfox put her testimony out for public comment (on ) before testifying. Participation on top of participation :).

  14. gr8 health IT consumer advocate @SusannahFox: testifying at HIT Policy Mtg, Pew Internet & American Life Project #HITPOL

  15. Bob Coffield says:

    Much of the problems that I see with ARRA and HITECH is that it is focused on the wrong end of the stick. Legislation focused on tech adoption rather than focusing on the underlying issues. The concept of meaningful use seems so backwards and vaporous.

    John Chilmark recently tweeted about an example. His comment – why not say we will lower medical errors 50% by 2015 and then let innovation take over. Incentives need to focus of fixing the underlying issues and then let the technology/innovation/competition drive us there. Patient/consumers are wonderful at consuming the products that work for them and forcing innovation. This happens rarely in the health care industry.

    This approach will also have a positive impact on the innovation rate that Dave points out above.

  16. Susannah Fox says:

    Thanks, everyone, for providing these excellent comments. It was my honor (really) to read portions of them to the committee today.

    Dave’s “SO 2009” line was repeated throughout the rest of the day – by David Blumenthal, by Paul Tang, by fellow panelists.

    More later…Latanya Sweeney is now speaking!

  17. Tony 2 Tone says:

    With all thats going on in the world in these days, internet privacy is really what the world needs. We don’t need spies, spooks, or governments looking over our shoulders. We can handle our own individualism and can maintain our daily lives without government oversight.

  18. […] Tang was riffing on an e-Patient Dave quote, which I read during my testimony: I want innovation at a rate that resembles the rate of improvement in cell phones and iPods: I […]

  19. SusannahFox says:

    The gist of what I'll say: E-patients want access to tools and information. #ich09 (@ if you have more to add please)

  20. carlosrizo says:

    RT @SusannahFox: E-patients want access to tools and information. #ich09

  21. SusannahFox says:

    @bobcoffield Thx again to you & @john_chilmark for health privacy insights ( Was able to flip the debate at #ich09

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