Data for Health: Coming to a Town Near You …


We have some questions for you—questions, that is, about health information. What is it?  Can you get it when you need it? What if your community needed important information to make your town or city safe or keep it healthy? How about information about your health care? Can your doctors and nurses get health care information about you or your family members when they need it quickly?

I came across a recent Wall Street Journal article about a remarkable story of health, resilience and survival in the face of an unimaginable health crisis—a Liberian community facing the advancing Ebola infections in their country got health information and used it to protect themselves. When the community first learned of the rapidly advancing Ebola cases coming toward them, the leaders in that Firestone company town in Liberia jumped on the Internet and performed a Google search for “Ebola”.

From that Internet search they learned how to protect themselves. Then those brave people acted on that new information—that new knowledge. They did a number of things like use the information to build quarantine and care facilities as well as map the advancing illness cases in their town—so they could be smart about identifying, quarantining and caring for those infected with the virus—and then stop it. Months later, this town is now essentially a lone bright spot of health in a country devastated by death and illness. Why?  Because the leaders of that town used technology to get the critical health information they needed, and then they used it to act.

Across the globe, in a far different place we find a prosperous, safe community in the United States. It’s a place fortunate to have vast resources and great wealth. It’s a place with beautiful health care facilities that have expensive, nearly brand new electronic health record systems with some of the world’s best trained health professionals. Almost everyone living in this community has a smartphone and nearly nonchalant, expected instantaneous access to detailed information about everything from traffic patterns and weather to the latest movies and best restaurants. This place faced its own Ebola crisis, and something different happened.

Sometimes data, in spite of all of the advantages, does not turn into useful information. We all know now about the health care system failure in Dallas that prompted the missed Ebola diagnosis there. The doctors and nurses in that Dallas hospital had  a brief opportunity to put key bits of information about the patient infected with Ebola together so they could make the right care decision —but they couldn’t quite do it. Instead they missed a chance to get a sick man the care he needed and at the same time triggered a community and national health crisis.

Miscommunication in health care is not unusual. That’s sadly not the headline for the Dallas Ebola story, and it’s not my main point here. It is, however, a striking example of the limits of our current health data system. We have potentially helpful health data all around us—but all too often when we need it to help us make smart health decisions for ourselves or our communities we can’t quite put it together.

What if, however, we developed the information capabilities that would help ensure that you, your community leaders, your physicians and nurses and other health professionals could easily, readily, rapidly and reliably get health information when they needed it in order to keep you safe, help you manage your illness or get and stay healthy? What would that system look like? What do you expect from such a heath information system? What worries you about data systems that provide important information about your health and the health of your community?

We at the Robert Wood Johnson Foundation want to know. We work with leaders like you across the country to help build a Culture of Health. None of us can build that health culture without a way to get and use the best health information possible, quickly and efficiently. So, we’re convening a series of meetings across the country in Philadelphia, Des Moines, Phoenix, San Francisco and Charleston this fall to ask you.

Specifically we’ll be inviting 100 community members from each of those places to tell us their hopes, aspirations, worries and fears about digital collection, access and use of data for health. National Coordinator for Health Information Technology, Karen DeSalvo, is interested in these RWJF meetings as well. She will be at all five events listening in person.

Although creating a reliable data system is a tough technical problem—that’s not really the hard part. The really hard data system challenge will be deciding what we want as a country—what we expect—what worries us—and what we will ultimately demand.

As you can see, we have a lot of questions about health information.

Mostly, though, we’ll be listening as hard as we can to you this fall for some answers.

 Michael Painter is a senior program officer with the Robert Wood Johnson Foundation. 

13 replies »

  1. Just to completely transparent-here’s our internal criteria for selecting guests for these five meetings:

    •Guests should be those who are using or might use information to make decisions about health:

    ◦ Concerned citizens, e.g. patients/patient advocates, educators, local community leaders (community planning boards, neighborhood associations, PTA, faith leaders, etc.),

    ◦Local government: city planners, transit agencies, parks & rec, public health workers (inc. epidemiologists), school districts, social service providers

    ◦Local non-government organizations/service providers: affordable housing, community development, employment/jobs

    ◦Local business leaders

    ◦Health researchers

    ◦Data journalists

    ◦Local health care leaders and practitioners/clinicians, public health professionals and social service providers

    ◦Local health care informatics individuals and groups

    ◦Local collaborative health or health care improvement efforts, local QIOs, organizations that use health care data to improve services

    ◦Local tech innovators, local data organizations

    If you are in any of these categories and live in these cities–let me know, we will try to get you an invitation.

    Space is limited though.

  2. “We have some questions for you—questions, that is, about health information. What is it?”

    That I know, given that I am among the HIT digerati. Blog.KHIT.org

    “Can you get it when you need it?”

    Not easily.

    “… How about information about your health care? Can your doctors and nurses get health care information about you or your family members when they need it quickly?”

    Unevenly. I’m now in the Muir system in Contra Costa County. They need to spend less time erecting self-congratulatory billboards everywhere in the East Bay near the expressways and more time integrating their care services and infotech across their facilities and specialists.

  3. Becky-I agree with you that the Firestone community response was remarkable on many levels. It’s a real bright spot in this very sad global story. Thanks for commenting here.

  4. Steve-We agree with you. In fact, you’re making the point for this listening series of meetings. While we certainly hope that health professionals attend and give input, we are hoping to hear from others in these communities, parents, people trying to manage illnesses, city leaders, public health leaders, business leaders–and others like that. Also, if you live in or near any of these cities, let me know. We’ll get you an invitation so you can give this kind of input. Thanks so much for the comment.

  5. I too read that story about firestone and have been thinking about the different Firestone’s response as contrasted with the US response. In the end my conclusion was that Firestone believed the threat was real and thus took action to contain that threat. Here is the US, we didn’t see ebola as a threat. It was far away, our healthcare is much better, ect… We were comfortable and arrogant and unprepared! That is changing. Of course, we have made some mistakes early on, but now that we are “awake” and perhaps a little more humble, the US will step up to this challenge.

  6. Michael,

    You fail to appreciate where the real “communications” challenges lie. You can give providers all the data (big and small) in the world but it needs to be “communicated” to patients in a way that 1) sufficient to meet their personal needs (not just the provider’s often underestimation of their needs) and 2) is presented to patients in a way they can understand (health literacy). We also need to remember the caveat “simply giving information” (to providers or patients) aloneis not enough to change behavior. Perhaps as you assemble your panels of 100 community members you might consider including patients instead of providers (usually the same providers that have brought US health care to its’ present, sorry state.

  7. We’re full with latest and advanced technologies, If we use it intelligently we can face number of crisis successfully. This is what the story of community tells us. These guys are proactive and instantly took right steps to face the problem and ultimately they win.