Advances in health IT must be viewed as a whole

New report ties together devices, data, records, and aspects of care.

Reformers in health care claim gigantic disruption on the horizon: devices that track our movements, new treatments through massive data crunching, fluid electronic records that reflect the patient’s status wherever she goes, and even the end of the doctor’s role. But predictions in the area of health IT are singularly detached from the realities of the technical environment that are supposed to make them happen.

To help technologists, clinicians, and the rest of us judge the state of health IT, I’ve released a report titled “The Information Technology Fix for Health: Barriers and Pathways to the Use of Information Technology for Better Health Care.” It offers an overview of each area of innovation to see what’s really happening and what we need to make it progress further and faster.

The report is divided at a high level into four areas for investigation; although, as one reads along, it should become increasingly clear that they’re all connected:

Devices, sensors, and patient monitoring
Topics include the advances offered by miniaturization; what fitness devices offer their users and why their popularity isn’t growing even faster than its impressive current rate; and the importance of gathering their data, which leads to the next area.
Using data: records, public data sets, and research
This area includes public data sets — a topic showing astonishing developments as government and health care institutions belatedly enter the Internet age; clinical research — a more conservative discipline that is yet evolving toward more cooperation and data sharing in fits and starts under funding pressures; and barriers to the greater use of data.
Coordinated care: teams and telehealth
This area looks at the ways doctors need to share data and treatment plans with each other; with other members of the treatment team; and, ultimately, with the patient, whose daily behavior has more impact on her health than anything the professionals can do. This section also looks at health information exchanges, Accountable Care Organizations, and telehealth.
Patient empowerment
In many ways, the entire report culminates in a plea for a bigger role for individuals in their health care. Patient control over their own records is a key battle cry, considered uncontroversial by most observers but stubbornly hard to achieve. Other topics include online support networks and gamification.

Veterans of health IT wars may ask where electronic health records (EHRs) fit into these explorations. The answer is: everywhere. Records are crucial for tying together the four previous topics, just as our veins, arteries, and neurons connect our organs.

Readers may find some of the report’s conclusions surprising — such as the importance of device vendors releasing the health data they collect and the importance of giving patients their data — but in truth, they have been part of the standard remedy offered by health reformers for years. The report discusses the business decisions that hold back these advances.

Many will remember, for instance, the short-lived Google Health and its competitor Microsoft Healthvault, which is alive but not thriving. It’s interesting that Box and Apple have recently announced platforms allowing users to track their personal health records. Will they fare any better than their predecessors? The answer lies in the degree of pressure individuals, reformers, governments, and insurers place upon the health care field to modernize and open up its records.

Much of the tension in health IT stems from data hoarding, carried out by hospitals, manufacturers, and governments alike. Few organizations like to release the data they hold on patients or relinquish control over their own data quality. Many blame privacy concerns, and these do have unique impacts in health care.

But withholding data also fits each institution’s agenda, for various reasons. Hospitals do it to place hurdles in the way of patients taking their business to competitors. Device manufacturers do it to commercialize the data they collect from patients (something most consumers don’t know about). And governments do it to protect politically powerful constituents, or just out of inertia and bureaucracy.

So, we need to find counter-incentives to change behavior. Doing so will have ripple effects on health information exchange, the use of device data, and many other areas of reform.

Trust is a major issue running throughout health care, as I have written elsewhere. New treatments require some kind of validation to prove they’re safe and effective — that is, they actually improve health, don’t have deleterious side effects, and generally are worth the money spent on them. Because the usual way to demonstrate safety and effectiveness is through expensive clinical trials, a nimble and innovative health IT field will have to find alternatives.

The FDA has often been asked to regulate electronic health records as medical devices, and has already declared that it can regulate certain types of pure software as devices. As in other industries, this makes upgrades — even simple bug fixes — problematic because they create a “new device” that must undergo a heavy-weight validation process. But the computer field has failed to demonstrate that it can police itself. Until we get more consistent about applying quality measures, doctors and payers have the right to demand that we subject software and devices to a regulatory process.

Rather than address these issues forthrightly, device and software vendors have tried to short-circuit the political process and asked Congress to wave a magic wand to make the FDA go away. This will not help them get the approval they need from payers if they want their products widely used. But the health care industries have a habit of complaining that the Department of Health and Human Services is micro-managing health reform, then running to Congress for ill-considered and narrowly targeted changes.

Despite occasional forays like this into the quicksands of political debate, my report tries to focus on technology rather than policy. But it recognizes the tight connections between them, and I hope the report helps readers make more informed decisions in both areas.

Now, it’s time to hear from readers. I would love to see others expand on the report or critique it in their own articles. To comment to me privately, or to suggest ways to expand the conversation, please send a note.

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  • C

    Apple has not announced any health tracking platform. Your link is to an unconfirmed report on a rumors site.

  • none

    Great video!

  • http://blog.bernardfarrell.com/ Bernard Farrell

    Timely post, and a great report.

    It will be interesting to see if Apple’s HealthLink will make it easier for data transfer to happen from EHRs to patient data and vice versa. The DOC (Diabetes Online Community) has been advocating for better access to our data for many years.