The Wrong Way and the Right Way to Frame PHR Privacy/Confidentiality Issues

 Vince Kuraitis and David C. Kibbe, MD MBA 

During the past week two reports were released discussing privacy/confidentiality issues surrounding PHRs.  One of these reports did it the wrong way; one did it the right way.

The general public is just learning about Personal Health Records (PHRs).  We believe that the appropriate way to frame the dialogue for the public is to acknowledge both the benefits and risks:

  • Benefits: PHRs (and EHRs) have the potential to save lives, reduce medical errors, improve patient diagnoses, and reduce health care costs
  • Risks: PHRs (and EHRs) have risks relating to privacy and confidentiality.  These are significant, legitimate concerns that must be identified and addressed.

Let’s briefly review the two recent PHR reports.

The Wrong Way

The World Privacy Forum (WPF) issued Personal Health Records: Why Many PHRs Threaten Privacy.

This report could have been titled “12,356 Things That COULD Go Wrong With Your PHR.”

It’s not the substance of the report to which we take offense — the concerns raised are valid. It’s the fact that the report 1) presents a completely one-sided perspective of potential privacy/security risks around PHRs, and 2) does not bother to suggest any possible solutions.

The only sane conclusion anyone reading the WPF report could draw would be “Why on earth would anyone want a PHR? I’ll be much safer stuffing my personal health information in a proverbial mattress, where nobody can touch it.”

This report is akin to “12,356 Things That COULD Go Wrong With Your House”:  #14) Your house could collapse on you during a tornado.   #394) Rats could infest your house.   #11,642) Masked gunmen could take you hostage inside your house.

Given all these risks, why on earth would anyone ever want a house?

There is nothing constructive in the WPF report.  Why not propose a model set of laws to minimize security/privacy concerns around PHRs? How about suggesting elements of an appropriate PHR privacy policy that PHR companies could use?  How about ranking and rating specific PHRs on the 12,356 things that could go wrong?

The WPF report is one-sided and irresponsible. We suggest you use it to line your birdcage.

The Right Way

The  California HealthCare Foundation essay —  Whose Data Is It Anyway? Expanding Consumer Control over Personal Health Information — covers essentially the same territory as the WPF report, but does it acknowledging risks AND benefits surrounding PHRs.  Its focus is on the establishment of fair information practices to govern the uses of health information in a changed and much more connected world. It’s also very constructive in offering helpful directions and possible solutions.

Here are some excerpts from the Key Findings:

Redefining consumers’ rights will require a fundamental shift from the current legal structure, in which clinicians control medical records and determine the permissible circumstances for disclosing the information in them, to a new legal structure in which consumers have an affirmative right to access electronic information regardless of its source and to use it as they deem necessary.

New laws could give consumers the right to direct that a copy of any personal health information stored in a standardized electronic format be sent to the custodian of their choice, and ensure that the custodian uses the information in a manner specified by the consumer.

New laws will require a clear definition of “personal health information custodian.” …

Economic incentives for clinicians to adopt a technology enabling them to convey personal health information to patients would facilitate the transition to a new legal framework.  Eventually, this capability might be required as a condition for receiving federal reimbursement under Medicaid, Medicare, or other government-financed programs.

The public is just learning about PHRs.  Let’s make sure that they are exposed to both sides of the debate.

4 thoughts on “The Wrong Way and the Right Way to Frame PHR Privacy/Confidentiality Issues

  1. Excellent comments which i completely agree with but i think you’re being a little unfair particularly considering the very different agendas of the organisations.

    The WPF is doing an excellent job of raising awareness of the many privacy issues whereas the CHCF is once again right on task with it’s mission to improve the delivery and financing of healthcare. Both of these reports are completely free and add interesting insights.

    Yes we have to get consumers aware of the PHR good news story but people like us (who are implementing consumer controlled PHRs) benefit greatly from a report suggesting 12,356 important issues that we should address.

    If the housing report was written for town planners to help them avoid designing/building poor quality new conurbations i think we’d all agree it would be a good report – but yes, if it’s meant for public consumption it’s a bit of a doomsday outlook.

    Isn’t this really just a case of Horses for Courses?

  2. Vince and David,
    Nice little compare and contrast between these two reports. Yesterday at HIMSS, Deborah Peel also addressed the issue. There was also quite a lengthy list of comments on the topic regarding Google’s announcement as well last week regarding Cleveland Clinic and most of those comments were ill-informed.

    Bottom-line, which I addressed in more detail at: is that the PHR industry has done a pretty poor job, as a whole, on tackling the privacy issue head-on. Until this industry works together to pro-actively support privacy, we’ll see a couple of these reports pop-up every year.

  3. The Pundits & Pontificators predicted the NFL Football Giants would get annihilated by the 17-0 Patriots, but it seems that got it wrong in Super Bowl XLII.

    It will take “out of the box” thinking to solve this PHR issue. I for one, think Mr. Newt Gingrich’s vision on how to address these complex issues are right on. Here’s the link to his HIMSS 1-on-1 Interview with the Editor from Healthcare Informatics.

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