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Judging personal health records by their usefulness

It appears that at least the first phase of personal health record (PHR) certification from CCHIT (Certification Commission on Health Information Technology) will focus on a narrow set of attributes. CCHIT Chairman Mark Leavitt told a group earlier this month that the first set of PHR standards will focus primarily on privacy, security and interoperability.

Leavitt indicated that functionality standards would initially only address what functions are needed to support privacy, security and interoperability. I asked him the following question: Given that what many consumers need to know is how useful would different PHRs be to helping them and their families manage their health, wouldn’t it make sense to include a broader assessment of functionality in CCHIT’s PHR certification?

Leavitt didn’t say that they wouldn’t consider that in the future, and that they intended to continue raising the bar over time.

The concern that some industry insiders have voiced in response to my question is that they are concerned that a more robust assessment of PHR functionality might stifle innovation by mandating adherence to a too-narrow set of specifications.

There are several ways to address that concern, and we can learn from other consumer markets. For example, think about how Consumers Union provides guidance via Consumer Reports. CR evaluates consumer products along multiple dimensions. Although some people may just look at the overall ratings or the “best buy” in a category, CR explains the different dimensions and why each may be important to particular users and allows consumers to understand performance along each of them.

I agree that privacy and security concerns need to be addressed at the outset. There’s no doubt that’s consumers’ number one concern at this point. As I have said before, however, part of the reason for that primacy is because we haven’t done enough to: 1) Understand consumers’ health needs–and how HIT tools can help address them; and 2) Provide guidance to consumers regarding how existing PHRs may actually serve useful functions.

By focusing PHR certification exclusively on privacy, security and interoperability, CCHIT is basically playing defense. These attributes address consumers’ real concerns but they don’t give them reason to get excited about using new tools.  In other words, we’re not guiding consumers to products that they want to use –- just on products that they don’t want to use.

Some inside the industry have told me that they don’t think it’s CCHIT’s role. Perhaps that’s the case. But the need is definitely there. If CCHIT doesn’t address it, then I presume before long CU or some other consumer organization will develop a PHR consumer guidance tool that is much more useful and has CCHIT certification as just one of its components (regarding privacy, security and interoperability).

Public comment opened here Monday.  I know what I’ll be telling them. What do the rest of you think?

Joshua Seidman is the president of of the Center for Information Therapy
that aims to provide the timely prescription and availability of
evidence-based health information to meet individuals’ specific needs
and support sound decision making.

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Online Doctor AppointmentPatient Health RecordsJoshua SeidmanLee G.Paul Maurice Martin Recent comment authors
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Online Doctor Appointment
Guest

Personal Health Records allows patient to provide doctors with valuable health information that can help improve the quality of care that patient receives. Personal Health Records can help to reduce or eliminate duplicate tests and allow you to receive faster, safer treatment and care in an emergency and helps to play a more active role in yours and your loved ones’ healthcare.

Patient Health Records
Guest

Patient health records helps

Joshua Seidman
Guest

Lee G,
Yes, it does seem counter-intuitive. From my perspective, the more objective and systematic guidance we can give to users about functionality of competing PHRs, the more competition there will be around innovative functions. The key will be to get robust measurement of functionality so that we’re measuring the tools based on users’ real health care and information management needs.
Josh

Lee G.
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Lee G.

Let me get this straight. Industry insiders think that evaluating the functionality and usefulness of PHR’s would stifle innovation? I think evaluating functionality and usefulness will have the opposite effect: it will encourage more effective innovations by weeding out the bad ones. No one expects every innovation to be effective (i.e., useful). That’s why we have to test each one, EARLY on in the development process, so that we don’t waste time and money on new ideas that later turn out to be ineffective.

Lee G.
Guest
Lee G.

Let me get this straight. Industry insiders think that evaluating the functionality and usefulness of PHR’s would stifle innovation? I think evaluating functionality and usefulness will have the opposite effect: it will encourage more effective innovations by weeding out the bad ones. No one expects every innovation to be effective (i.e., useful). That’s why we have to test each one, EARLY on in the development process, so that we don’t waste time and money on new ideas that later turn out to be ineffective.

Paul Maurice Martin
Guest

In a related issue:
I wish there were a way to make patient records more accessible to doctors. As a patient with a complex case, I found it was unhelpful to send my records to physicians ahead of time. It would be clear the doctor had not reviewed them although I’d distilled them down to just the positive findings and best physician summaries.