So, Kathleen Sebelius, Steve Jobs, And John Donne Were Working on This App…

June 29th, 2010

Kathleen Sebelius, Steve Jobs and John DunneBy Stephen Murphy, Senior Vice President, Digital Strategy and Innovation

The cause celebre today is the emergence of the electronic health record (EHR), an online site where doctors can place everything they know about a patient’s medical history, and patients can log on to check their health records. The leading edge of this innovation is the personal health record (PHR), a health-management tool that people are using to access (and control) their own health information. Good-bye, paper records-eventually.

Not many people have PHRs yet, but the rate of adoption is accelerating through services like Google Health and Microsoft HealthVault. A recent report from the California HealthCare Foundation shows that 1 in 14 Americans has used a personal health record, twice the number of users from the previous year. The new research reveals that people with PHRs “know more about their health, ask more questions, and take better care of themselves.” One-third of respondents say they use their PHRs as a vehicle for taking specific action to improve their health.

Health data can drive positive change when people who are engaged with their PHRs start taking better care of themselves. Plenty of health mobile apps are emerging that support personal interaction with one’s health data, and that’s a great step forward for the individual. But as a society, and within Government, we could be doing a much better job of sharing our health data resources. We need to fully integrate our data in a social sense to realize its full value.

Today’s Government websites contain massive amounts of information about grants, publications, and research resources. They’re built on an underlying infrastructure of data and information technology (IT). But the purpose of creating these systems is not to inform audiences about data and IT. The goal is to connect, tell a story, educate, and effect change-not easy tasks when the data are floating on disconnected islands. If I put up a website about nutrition, I want people to read my material and look for ways that they can adapt it to their lifestyle and needs. I want to pursue new opportunities to create positive behavioral change for a healthier America.

Six Ideas To Make Data Social

1. What if you could coordinate a communications plan, an outreach plan, a mobile plan, and an evaluation plan at the same time that you design your EHR system or website?

2. What if, at the outset, you built a solution that could feed a mobile application, an EHR record, a grantee website, and your Facebook and Twitter feeds so others could create their own mashups from your data?

3. What if you consider how the data you house could inform the EHR record of a health provider and build a data link to make it happen? Wouldn’t links to research data or evidence-based best practices provide a richer data set than just a blood test?

4. What if you could harness the data warehouse, the taxonomy that classifies your publications, and product description data to fuel a story bank of short-form messages for social media?

5. What if you could build in extensible data architecture that provides output information that can be meshed with Google maps to show publication shipments by mapped ZIP codes? What if you could overlay that information with data on disease prevalence, drug use, and homelessness?

6. What if your data architecture was designed to support a mashup of data to grantees that could help them write their next grant application or allow them to embed a shopping cart for your agency products on their site?

A Killer App

John Donne is famous for saying, “No man is an island, entire of itself; every man is a piece of the continent.” He also said, “Never send to know for whom the bell tolls; it tolls for thee.” Donne was referring to the custom of ringing a bell to inform the community when someone in the village died.

So imagine if John Donne, Steve Jobs, and Kathleen Sebelius, the U.S. Secretary of Health and Human Services, met to update Donne’s communications approach for our data-driven time. My guess is that they would come up with a mobile app that would inform you every time a useful piece of health information is produced that affects you. This message may be worth remembering the next time we’re tempted to invest more health dollars in another data island.

Health Information, Online and Social

December 2nd, 2009

By Dan Johnson, Technical Assistant to the CEO

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Roughly 61 percent of American adults say they search for health information online, usually to read about a particular disease or health condition, according to a report from the Pew Internet & American Life Project. But, about 20 percent of them are doing far more: They are having health-related conversations at social networking sitessharing their symptoms, opinions, and questions with online communities that include friends, family, and fellow patients.

“People are accessing a much deeper level of information than they were 5 years ago,” according to Susannah Fox, Associate Director, Digital Strategy, Pew Internet. “They are part of the conversation. And that, I think, is an indicator of where we could be going in terms of the future of participatory medicine,” said Fox, in a recent interview on National Public Radio.

So far, the use of information technology by caregivers remains modest, as measured by the number of hospitals and doctors who report that they use computerized medical records, usually in the range of 15-17 percent. It is likely that these low numbers say more about the nature of change in bureaucracies than about the online interests of doctors. Like the implementation of health reform in general, the Government’s effort to make electronic health records (EHRs) part of a next-generation health care system is extraordinarily complex. In the meantime, it is no wonder that people who are used to having EHRs from veterinarians for their family pets are turning to “Google Health” and Microsoft’s “My Health Info” to create their own personal health records.

Doctors, however, are hardly clueless when it comes to social media and participatory medicine. Sixty percent of physicians say they have used or want to use social networking sites, according to health writer Judith Messina. In “Medicine Meets Social Networking” (crain’s new york business), Messina describes virtual communities of doctors who share experiences, offer problem-solving tools, and make recommendations for patient care. Two of their largest social networking sites, Sermo and Medscape Physician Connect, are physician-only platforms that have more than 100,000 members each.

It seems to me that concerns about privacy (for patients) and liability (for physicians) could, for the foreseeable future, dampen direct social engagement online between doctors and people seeking health information. Can anyone recommend a Web-based community where doctors and people with health questions have agreed to support an unrestricted, informal brand of participatory medicine?

In the meantime, participatory medicine may be due for significant change:  Behavioral economists are researching ways to better understand the decision-making processes of an ever-larger body of people who look for health information online.  Harvard economist Sendhil Mullainathan, for example, focuses on non-rational factors that fuel decisions, such as identity, self-control, risk aversion, and social desires.  Mullainathan’s approach to behavior changewhich entails extensive testing and evaluationis aimed at motivating market forces to create new incentives to enable people to place a high value on the benefits of disease management.  IQ Solutions is closely tracking the implications of behavior change science on our own evolving mechanisms for promoting wellness and disease prevention to the widest possible audience, including the traditionally underserved. For information about the work of Mullainathan and other experts, see the summary of the NIH Science of Behavior Change meeting in 2009.