A Good Personal Health Record is Hard to Find

Over the weekend I developed another bout of diverticulitis. Did the usual: fluids, antibiotics, rest, avoided going to the ER, cancelled travel plans.

One of my doctors asked a very simple question: is this happening more frequently? The answer, we both knew, was yes. But I don’t have a Personal Health Record (PHR) that in principle, through a few clicks, would give a time-frame graph of the bouts and severity of the episodes over the past several years.

The last time this happened, and the time before that, I thought I’d finally start a PHR. Like most compulsive patients, I keep records about my health. In the folder in my closet in a cheap old-fashioned filing box, the kind with a handled top that flips open, I’ve got an EKG from 15 years ago, an OR report from my spine surgery, copies of lab results that the ordering physicians chose to send me, path reports from my breasts, a skin lesion or two, and, more recently a colonic polyp, bone density studies from 2004, EMGs and more, essentially miscellaneous results.

None of the records I have are digital.

A few years back I considered using Google Health. But their service, as I understood it, involved scanning documents and uploading them to the Cloud, or paying someone else to do so. That sounded like a hassle. But even had I done that, I wouldn’t have been able to, say, see a graph of my hemoglobin since 1986, or something as simple as my weight changes over time. When Google Health folded a few months back, I was disappointed. At the same time, I breathed a sigh of relief that I hadn’t invested my personal and limited energies into putting my records there.

But now what?

I searched for a PHR, again on-line, and found some commercial stuff, mainly targeting doctors’ offices and larger health care systems. Medicare’s information on Managing Your Health Information Online offers bullet-point explanations on Why Use PHRs?

But I needed no convincing. What I need is software, or a platform, that’s user-friendly and secure. Ideally mine would mesh with my physicians’ records, but my doctors use a variety of record systems. So it’s up to me to integrate the data, if anyone will. The problem is there’s little out there, as best I can tell, that’s intended for patients. Most IT companies are, for now, focused on getting doctors to sign on.

So I’ll start an Excel spreadsheet, today, on my PC. There must be a better way.

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  • I look forward to the day when these digital records are up to speed and are part of the regular medical process because they have the potential to keep providers from over-testing, over-medicating and therefore, over-charging patients. Likewise, the records will help jog the memory of patients and give us concrete reference points to draw on. I think they will be valuable data collection devices if they are used properly. http://whatstherealcost.org/video.php?post=five-questions

  • Have you tried WebMD’s personal health manager? I have had good luck with it over the years and find it convenient. In addition, I have had several of my health insurance companies (it has been a weird few years for health insurance in this house) directly feed information in.

  • I use Excel. I have separate sheets for onco, ortho (I also had spine surgery, as well as some other stuff), and “other” by system. There is one master sheet with notable lab work results (patients have full access to all exams in this country) with links to “events” on the other three sheets.

    It’s a little easier here (Israel) because the health fund automatically uploads lab tests and imaging results that are done in their facilities to each patient’s on-line account. I don’t really know how I’d manage in the US any more.

    • Hi Knot, Here it depends, largely, on where you get your health care. There are a few health care systems that allow patients full or (more commonly) partial access to their hospitals’ and integrated doctors’ records through “patient portals.” At the hospitals where I get most of my care, there’s no open access to the electronic records. That problem is compounded in my case by the fact that I see specialists in different offices, some apart from the hospitals and each with their own records system.

  • Zweena may be a solution for you. I created Zweena 5 years ago with these issues in mind. Please go to our web site http://www.zweenahealth.com and see if our features and benefits make sense for you. We do the work in collecting copies of your records from any doctors etc, and then our trained staff creates your digital record which only you and anyone you authorize may have access to. We also publish your digital data to Microsoft HealthVault so now you take advantage of their digital partners as well, to help better make use of their new digital ecosystem. We have members from all over the US and Canada. Let me know if I can answer any questions. We are Consumer Centric and our application and service are focused on you.

  • As the creator and fake CEO of Extormity, I am all too familiar with the challenges you face in finding valuable health IT applications – especially when it comes to managing your own medical information. However, I also serve as president of a very real personal health record organization – NoMoreClipboard.com. Our portable, online product, along with several others out there, provides significant value to consumers and caretakers. While this category is still relatively new and will no doubt mature rapidly over the next few years, several of us give individuals a real alternative to creating home grown PHRs in a spreadsheet. Give our free PHR a spin, and see why practices, health systems, employers and public sector organizations are working with us to improve consumer engagement.

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