Informatics In Action: The Future: Consumer Health Information Technology

Informatics in Action

I was able to attend this session of Informatics in Action yesterday, at the National Institutes of Health Campus, as it focused on consumer health information technology. The cast was truly all-star, including Bern Shen, MD, from Intel Digital Health, Adam Bosworth, from Keas, and Bill Crounse, MD, from Microsoft (and also from the home team in Redmond, Washington). The session was moderated by Steve Taplin, MD, from the National Cancer Institute. A videocast may be available on the NIH site.

I think the group as a whole did a very nice job of talking about the needs today, along with directions for the future. I jotted down a few quotes on my iPhone from Adam:

It would be better in general if the system worked more like Kaiser.

Consumers don’t want PHRs. They want help and advice.

Adam also discussed three priorities, which include consumers being able to control their health data “in computible form,” empowering health professionals, and providing an easy way for researchers to implement protocols.

On the computible form issue, I have definitely seen the impact of not having things in computible form, for example, in trying to reconcile medication lists, where there are a plethora of medication products and non-standard codes.

Bill talked about 5 significant trends in health care, and he has an experience that includes a lot of work with international organizations, as well a long connection with the practice of medicine, which makes him well suited to put things in perspective. He introduced some of the concepts of HealthVault, a platform for PHRs, rather than a PHR itself. I am a regular reader of Bill’s HealthBlog, where it’s quite likely you’ll see a writeup of this event there as well.

In my work so far, I am seeing evidence that health care and non-health care professionals alike are working to make things happen in patient-centered health information technology, whether they call it that or not, and it is good to see.



Adam Bosworth is absolutely right on that account–that "consumers don't want PHRs; they want help and advice."

Most consumers don't have a strong desire to spend time on health care-related matters. Rather, they feel compelled to engage in health care issues that directly (and often intensely and emotionally) affect them or the people they care about.

Therefore, when we are thinking about developing patient-centered HIT tools, we should be focusing on meeting those needs: how to navigate an often complex and bewildering system; how to sort through a maze of (often technical) information; how to help people affect the change that they want to make in their lives; how to help people make informed decisions; how to help people cope with challenging issues; and much more.

I heard a great story from a physician at IxAction member Peace Health (a health system in the northwest) a few years back. He said that shortly after their HIT team began working on PHR development, they decided to do focus groups with their patients to find out what they wanted from a PHR. That input not only resulted in developing a tool that met their patients' needs better; it also ended up saving them money because, he said, some of the "cool" (and expensive) IT functionality that they initially proposed wasn't considered that important to their patients.

All the more reason to ask the patient or consumer first.


That's been my experience exactly in bringing up our secure online medical record services as well. As I always say, I am here to help people achieve their life goals through optimal health, not to improve their health care.

The granularity in Adam's comments: digitization of all key medical data, is a immense change for our profession, but essential in our transformation as a services industry. As present, our best automated medical records have a mix of digitized, and fundamentally analogue data. Adam's vision, it is ALL coded: ie, IMAGING findings, ECHOs, PFTs, Oxygen and Durable equipment orders. To do this, we will need new order entry tools (optical, etc.) And, we need agreements about the minimal discrete data to support diagnoses and plans. Technology can do whatever we tell it. But to tell it, we will have to agree on the data that adequately describe the procedrues, medicines, interventions that we order.

Lots of work ahead. Digitzation is the first step in multi-view configurability, and portability, and portability is the future.

Ted Eytan, MD