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Let Patients Control Their Healthcare Data: Give Them an Al Gore Lockbox

March 19, 2008 News 2 Comments

Inside Healthcare Computing has graciously agreed to make previous Mr. HIStalk editorials available from its newsletter as a weekly "Best Of" series for HIStalk. This editorial originally appeared in the newsletter in February 2006. Inside Healthcare Computing subscribers receive a new editorial every week in their Electronic Update.

I’ll confess that I’m paying minimal attention to the RHIO craze. Everybody’s starting one, conferences are showcasing speakers who’ve done nothing more than announce theirs, and tiny grants are getting the whole industry atwitter. It’s like living the dot-com frenzy all over again, irrational exuberance and all.

I’m not against RHIOs, but they’re as annoying as CPOE was awhile back, taking resources away from projects that could provide more benefits to patients without the minefields.

I recently interviewed Denni McColm, an award-winning CIO of a 74-bed rural hospital no different than 80% of those out there. Oh, except that they’re 100% paperless and 100% CPOE, something virtually none of the celebrity CIOs and Taj Mahospitals have been able to accomplish. I’ll listen to her, thanks.

First, Denni believes that organizations should be banned from using the word “interoperability” until they can bring their own electronic information to the table. If your IT house isn’t in order, RHIOs don’t need you. Anything short of everyone’s contributing information equally will cause the whole concept to collapse like an imploded 1960s Las Vegas hotel, so paper jockeys need not apply. Work instead on projects that will help your patients more than the begrudging swapping of routine lab reports with your cross-town competitor. Or, integrate all those systems you already have. Your admission ticket should be a checklist of what data elements you can supply electronically right now.

Second, Denni advocates a patient-centric RHIO model instead of the common payor-centric one. Do you like insurance companies enough to let them control patient information?

By patient-centered, I don’t mean personal health records. People are too irresponsible to reliably collect and store data with life and death importance. On the other hand, they could be given control over the trusted information generated by hospitals, physician practices, and other providers.

Suppose everything resided in an Al Gore-type lockbox that contains everything from discrete electronic data to scanned documents fed over the Internet. Either the patient controls the key (similar to a password) or only they can initiate data delivery to a provider. If they don’t want you to see it, you won’t.

This model makes most privacy concerns go away. It avoids the largely unsolved problem of how you assign some sort of universally mandated patient identifier (aka “political suicide”) to sort out the throngs of people sharing the same name. The patient simply says, “send my data to Dr. Jones” and it’s done. They keep control and there’s no arbitrary “regional” service area beyond which lies a medical no-man’s land.

Maybe some RHIOs work this way. Like I said, I don’t follow them. And, if I can’t see a quick and obvious patient payoff, I probably won’t start following them any time soon. I’ve got plenty of challenges working on clinical system projects that will hopefully save lives right now.

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Currently there are "2 comments" on this Article:

  1. A decentralized RHIO that is centered on patients? This is already happening with the Louisville Health Information Exchange, Inc. (LouHIE) project that is being built around Bill Yasnoff’s “health banking” concept.

    I would recommend anyone interested in further information either going to the Louisville Health Information Exchange, Inc. (LouHIE) project site and Bill Yasnoff’s blog.

    Some various states (e.g., Oregon, Rhode Island) are attempting similiar projects but I am highly suspect that they will have the dollars to put behind these concepts given their budget shortfalls in the next 2 fiscal years due to the current recession.

  2. Denni McColm (Citizens Memorial Healthcare) received AHRQ funding (grants) to support their health IT and quality improvement efforts.

    It’s great to see them recognized for their outstanding achievements.

    There is lots of public info available on them (and other AHRQ-funded healthcare organizations) at the National Resource Center for Health IT (www.healthit.ahrq.gov)

    Here’s a presentation on “CPOE Lessons Learned” from Denni (Citizens) and other AHRQ grantees froma recent AHRQ-sponsored webinar on “CPOE Lessons Learned from the Trenches. Their section begins on slide 59. http://healthit.ahrq.gov/portal/server.pt/gateway/PTARGS_0_8506_660335_0_0_18/CPOE_Lessons_Slides.pdf

    Here is also a presentation from Denni on Integration (the other I word): http://healthit.ahrq.gov/portal/server.pt/gateway/PTARGS_0_3141_40353_0_0_18/McColm.ppt#298,20,Integration, The other I-Word

    Here is information on the grants that they received (“Project InfoCare” and “Standardization and Automatic Extraction of Quality Measures in an Ambulatory EMR”) : http://healthit.ahrq.gov/portal/server.pt?open=512&objID=654&PageID=5585&mode=2&cached=false&state=Missouri

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