Challenges facing patients adopting personal health records

by Kristina Fiore

They’re still there. Rows upon rows of number- and color-tagged manila charts, packed in so closely together that Fiore sometimes sticks to Fiori, or hides behind it.

None of my physicians has yet converted to electronic health records. I dream of the day when my PCP can pull up my chart on her iPad, accessing all of the important information (allergies, family history) before making a diagnosis.

That doesn’t look like it will happen any time soon. Despite many incentives — including about $40 billion of the $787 billion stimulus bill — doctors are hesitant to create EHRs. It takes a lot of time and money to convert tens of thousands of file-folder records into bits of electronic data. And perhaps patients complain about security issues.

I am not one of those patients. If I need to reference proof of my childhood allergies, I want to be able to do it right from my iPhone, right in my doctor’s office — rather than wait days for a release from my pediatrician.

So I’ve decided to take charge of putting all of my healthcare records — all the ones I can accumulate, anyway — into a PHR, a personal (electronic) health record.

First step: choose between Google and Microsoft. Google Health and Microsoft HealthVault appear to offer similar health-storing technologies. You can manually enter data on blood pressure, lipids, blood glucose, exercise, and allergies, based on your own data collection. Both ask that you enter your physician’s contact information.

Both have partnerships with myriad health providers, such as Blue Cross Blue Shield and Quest Diagnostics, that you can supposedly search for your healthcare information as long as your physician participates.

But neither appears to offer a dedicated virtual drawer for the paper files that I plan to scan and upload. Both allow for uploading of files, but Google warns of a four-megabyte limit per document, and HealthVault a 3.5 MB limit. I’m not sure my entire pediatric medical record will fit into such a small PDF file, and I am not keen on the idea of copying each page individually. Hopefully those limits aren’t overall storage limits, either.

Of course, there’s also the challenge of obtaining those paper records to begin with. I assume my pediatrician has long since put my files in storage. Even when I do get them, which could take months, how long will it take me to scan and upload every page? And then to have to do that for multiple providers? I can understand why physicians find the conversion task so daunting. (Perhaps every patient should be charged with converting their own!)

Security, of course, is one of my main concerns. While HealthVault’s name alone sounds more secure, both services “place the security burden on the user, and have specific language in their respective use agreements that hold them harmless for any breach of data caused by a compromise of a user account,” according to an InfoWeek story.

Those accounts do get compromised. I once had a hacker break into my Gmail account, and it took six days for Google to determine that someone had indeed hijacked my account and was using it to steal my Ebay and Amazon passwords.

Even more concerning would be if someone broke into my health vault to deny me a job or insurance coverage.

Ultimately, my support of technology and convenience outweigh my worry. Hopefully my work will one day benefit one of my physicians (and collaterally, myself). Though by the time I’m middle-aged, I hope many of them will have implemented their own EHR.

Kristina Fiore is a staff writer at MedPage Today and blogs at In Other Words, the MedPage Today staff blog.

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  • http://AmericanHealthScare Richard Young, MD

    Kristina,

    I believe you’ve fallen into the trap of believing the GE commercials. While having all your records in one location sounds sensible to many people, does your physician seeing you tomorrow really need to know what your urine culture showed when you were six?

    Even bigger ticket items such as CT scans aren’t as useful as some would lead you to believe. If that study led to a tumor or gallbladder surgery, once it’s out of your body the normal parts left behind are just that — normal. Even if your spleen is one centimeter bigger 10 years later, that’s not information for a doctor to act on.

    EHRs are no magic solution. The literature on their effectiveness as improving safety, quality, and efficiency is spotty at best. Don’t put your faith in technology. Develop a long-lasting relationship with a family physician.

    • a med student

      Kristina,

      I think you are doing the right thing, no doubt about it. I have also done the same thing. Now, to prove I was vaccinated, and yes I need to do this often, I simply print out my GoogleHealth record and I am done. For my meds, I am connected to CVS so all I do is click on a refill and I pick them up down the street, again all in GoogleHealth.

      Dr. Young,

      There will never be a magic solution to anything in this world. Financial institutions have made this transition many eons ago, there is no question healthcare needs to move forward as well. The examples you give are true, but the bigger picture is that people travel often, switch doctors often, and do want their data at their fingertips, end of story. Whether or not one specific piece of that record matters should not dictate the transition into modernity. I want to access anything and everything about me, whether it was my urine culture results when I was 13 or my credit card transaction when I was in Europe three summers ago. There is no rational reason for anyone to not have this type of access in 2010.

      Thank you.

      • http://www.healthscareonline.com Richard Young, MD

        Med student,

        You’re desire to “access anything and everything about me” is perfectly understandable. How much are you willing to pay for that ability?

        I realize healthcare will become electronic just like so many other aspects of our lives. But I don’t want the public to delusionally believe EMRs will magically improve the healthcare system. It will make some things better; it will some things worse.

        Look at it this way, if EMRs were such an important advance, why didn’t doctors and hospitals rapidly adopt the technology? Why is the government having to spend tens of billions of dollars to encourage/force the medical world to move to EMRs?

        It’s because EMRs are very expensive and don’t help much. Especially the way they’re currently configured, they’re more about maximizing billing than improving patient care.

        I hope that at some point during your medical school and residency experience you realize that the most important component of a healthcare system that actually improves a patient’s health is a knowledgeable physician who is a good listener, not a gadget.

        • a med student

          Very good points Dr. Young.

          At the end of the day a gadget will never replace a good doctor, thats for sure.

          I do also see your points about EMR’s not being very user friendly, I have experienced this first hand.

          Still, waiting for the best configured, optimized system is probably not the best approach either. I am sure the initial systems for other industries were also flawed.

          Not all EMRs are expensive – look at CloudCare, PracticeFusion, and HelloHealth. They are web based and very affordable. Furthermore, they are very helpful, mostly for outpatient settings.

          Thanks for your insight!

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