Turning medicine inside out: It’s all about the data

(Mike Deal aka ZoneDancer/Flickr)

From the ashes of the demise of Google Health may yet rise a health care information system that really works — for doctors and patients alike. And let’s not forget caregivers – those responsible for the health of their children or aging parents. They need all the help they can get.

Interviewed last week for CommonHealth, WBUR.org’s health blog, Ken Mandl of the Children’s Hospital Informatics Program (CHIP) argues that Google’s effort fell short on a key ingredient: data. Mandl co-founded Children’s Hospital Boston’s open-source patient-controlled record, Indivo, and wants to see a world where medical data flows unfettered – brings real value. Here’s how he put it to CommonHealth:

Say I have diabetes. My doctor’s care plan is delivered through an app that helps me manage it. The system supports communication between me and all the members of my care team. My glucometer automatically feeds my personal health record data that is used by algorithms and apps making sure that my sugar control is on the money. My insulin pump is also sending data into the record. Every time I fill a prescription at a pharmacy, the system knows I’ve filled that prescription and have taken that med. The insulin bottle I’m using and the insulin pump also signal back that medication has been used.

A diabetic patient could frequently report his or her symptoms, lab results and medication side effects, sharing their experience with other patients through online social networks, and learning from the their peers.

Doctors don’t need to listen in on this kind of sharing, which after all can be quite time-consuming.  Instead, the system can summarize and present the information in an easily digestible format – both the individual’s symptom data and the collective experience of populations.

Sounds like nirvana, doesn’t it? And it’s all technologically possible.  But to attain it, there’s work to be done:

1) Get data to flow into the system – which means coming up with a common standard. “[Google Health] needed to dig in and do serious engineering with clinical systems,” Mandl told CommonHealth. “But they didn’t do that.”

If getting everyone on board immediately with the full medical record is too daunting, what about starting simple, by sharing medication data? Even this basic information, surprisingly, isn’t well shared.

There is absolutely no reason why the now 600 vendors of electronic medical records cannot begin to export standardized information. And my bias is that a very good place to begin would be to get the medication information correct.…. High quality medication data could flow to personal health records immediately from doctors’ offices, from pharmacies, and from patients, and start to form the basis for the first set of really useful apps for patients and doctors.

2) Remember the end users, and make collecting and reviewing data painless for them. That means go where the users are, and come up with painless ways of gathering data from patients and organizing it for clinicians.

The user experience has to be elegant and has to accommodate most levels of literacy and technological expertise. We are learning from Facebook and online health-oriented social networks that a social component to the experience may be a key ingredient… From the bottom, there need to be standardized, easy ways for getting data in. On the top there should be apps creating a seamless experience for the user. Once the patient has given permission, she should expend very little or no effort to have an app running that is improving her care…

3) Capture the patient voice in health information systems. There’s lots to be learned from Facebook, Google+ and other social networking platforms.  Sites like Patients Like Me have figured out how to aggregate data coming purely from patients. The next step is to seamlessly tie in this information with electronic health records.

4) Put the patient at the helm. Patients themselves need to have not just access to their health records, but actual control over their information and how it is used. Only then will they be willing to share it, not only with other clinicians, but for research purposes. Google didn’t go very far in building user trust, Mandl says.

With emerging Internet and mobile applications, patients are beginning to discover the value of owning their medical information, having their healthcare integrated, sharing and comparing notes, and participating in a collaborative community. In The Innovator’s Prescription, Clayton Christensen notes that patient-controlled health records like Indivo, where data travel with the patient, provide a platform for the development of apps that can use patients’ data, with their permission, to benefit themselves and others. Daniel Haas, lead architect of the forthcoming Indivo X, calls it a “secure Facebook platform for personal health.”

As Google Health prepares to cease operations next January, it’s collaborating with Microsoft HealthVault (which uses Indivo’s open-source code) to migrate user data into Microsoft’s system. But whether the platform is HealthVault, Indivo itself, or some other system, providing low-cost, quality health care is going to be all about the data.