Managing You: Why You Must Keep a Personal Health Record

Pop Quiz:

  1. Who is your primary care provider?
  2. When was your Tdap vaccination? Tetanus? Most recent influenza shot?
  3. Did you have a physical this year? What were the results?
  4. What are the medications you’re currently taking, and what are the dosages?

If you did poorly, don’t beat yourself up — many Americans are unaware of how to keep track of their health. But think about it: do you keep your motor vehicle documents, like registration and proof of insurance, in a handy folder in your car, along with records of all the service work you’ve had done on it? Do you store your tax returns and important personal documents in a safe, convenient place at home? If you do, then why aren’t you doing the same about what is arguably the most important thing you possess — your body? Shouldn’t you be showing the same diligence, if not more, for your health and wellness?

Allow me to introduce the concept of the Personal Health Record. Simply put, the PHR is a detailed library that contains all of the most up-to-date information from your electronic medical record (EMR) — the database held by your doctors and insurance providers for the purpose of medical coding and billing — and your own notes on your health. In contrast to the EMR, your PHR is yours to control, modify, and manipulate as you see fit. It can be used through a platform of your choice: an online database, an app for your phone, or — as in my case — a hard copy in a three ring binder with color-coded tabs.

If you’re familiar with pedometers, FitBit, or apps for your phone like CouchTo5k and Fooducate, you already understand a little of how a PHR works. Most Americans, in fact, have used a fitness or weight loss program or app at some point in their lives. You’ve probably written down how much exercise you did, or tracked your caloric intake for a diet, at some point in your life. Any of these tools, in essence, can be employed to help you track your health and nutrition history and meet your personal goals. Your PHR, however, is more complete, integrating the information your health care team already has into a more comprehensive picture of your biological profile. A good PHR can include your fitness routine and calories consumed, but also keeps track of much more.

The benefit of maintaining a PHR is, of course, knowledge and of course (thank you Sir Francis Bacon) ipsa scientia potestas est: knowledge is power. Here’s how one paper, in the Journal of American Medical Informatics, put it:

Personal health record systems are more than just static repositories for patient data; they combine data, knowledge, and software tools, which help patients to become active participants in their own care.

In other words, PHRs give you a variety of additional tools to manipulate data. For example, if you track you blood pressure daily, you can use you PHR to determine your average BP over the course of a week. You can form a data set for how many calories you’ve burned while exercising. Raw data is just the beginning; with the magic of mathematics, your basic data allows software programs to draw conclusions about your health, and advise changes when needed. (You can also manipulate the data yourself, if you’re so inclined.) The article continues:

One of the most important PHR benefits is greater patient access to a wide array of credible health information, data, and knowledge. Patients can leverage that access to improve their health and manage their diseases. Such information can be highly customized to make PHRs more useful. Patients with chronic illnesses will be able to track their diseases in conjunction with their providers, promoting earlier interventions when they encounter a deviation or problem. (The complete article is available here. The National Center for Biotechnology Information is a tremendous, free scientific resource by the way.)

This a critical conclusion: tracking your health improves your general well-being. If you’ve got up to date information, you can — as is described above — quickly note any deviations from the norm and get necessary medical assistance faster. Keeping on top of your weight, having blood tests results on your white blood cell count, A1C, iron levels and much more, recording changes in your weight or sleep patterns, and so on allows you to make smarter decisions. Being conscious of your health on a daily basis gives you an advantage, too, when time is crucial. Often, it’s small symptoms that are overlooked or — worse — ignored that signal a serious health issue.

And if your primary care provider provides access to your EMR, there’s the speed and ease of communication to consider, too. I get my office visit summaries, diagnostic images, test results, and more through MyChartPlus, and last time I had blood work done I had all of the lab results before my doctor did. I can also make, cancel, and reschedule appointments online or with my phone. My doctor can send me letters or messages through it, too.

So what should you include in your PHR, and how should you manage it? Well, the format is a matter of personal taste; you may prefer a desktop software program — as simple as a Word or Excel sheet or a more complete program created specifically as a PHR like Microsoft’s HealthVault (n.b., Microsoft recently ended support for Healthvault for the Windows phone but the desktop program and app itself are still available). Web-based applications like MyMinerva or Dossia Health Management System give you the piece of mind of knowing your data is backed up offline — though, conversely, it comes with the risk of security breaches that could put your private medical information into someone else’s hands. For smartphone users, the MyMedical and OnPatient PHR apps are both great, but shop around to find the one you prefer. And, as I mentioned before, you can also keep your records in a well-organized binder — a bit old fashioned, I suppose, but easy to access and reference when you need it. I print my information from my EMR via MyChartPlus or get hard copies at the doctor’s office, and file them away for use when needed.

As to what information to include, I am of the mind that more is better. I am of the “Type A” personality, to the degree that I color coordinate my pens to my scrubs, so I probably go a bit further than necessary: I include a daily record of all my exercise, I take my vitals and record them each morning, and I even have flow sheets to monitor my diet.

Here’s a saner list of what you want to include, at a minimum, in your PHR:

  1. Your prescriptions, the dosages of each, and the frequency of administration.
  2. Your immunization record.
  3. Your physicals or “encounter” reports, including the list of current health concerns/chronic illnesses and doctor’s report on your overall health.
  4. Lab results — (blood work, biopsies) and imaging results — ultrasounds, X-rays, and the like.
  5. Your insurance information.
  6. Reports from any specialists you’ve seen, histories of any procedures (surgeries) performed.
  7. Emergency contact information.
  8. Your allergies, especially to any medications.
  9. A copy of your living will, advanced directive, or any legal documentation of this sort (including DNRs).
  10. A journal with anything you’ve noticed or consider worth reporting (what are called Observations of Daily Living or ODLs). This can include simple reports such as, “I’ve had a dull pain in my side for the past three days,” or “I’ve been feeling nauseous a lot lately.”
  11. A brief record of your emotional/cognitive health and what you do to maintain it. This isn’t often recommended, but I think it’s important. Doing things you enjoy — and that reduce anxiety — are vital to good health. Plus, making a record encourages you to remember to take care of your emotional being, too — through meditation, creative arts, gardening, a hobby, or whatever it is that gives you joy.
  12. Your fitness routine and at least a sketch of your diet.

It may seem daunting, but I ask you again to consider: aren’t you worth it? Don’t you deserve at least as much attention as your car? At least some experts think most of us just don’t care, and that’s why PHRs have yet to come into widespread use. I prefer to think, however, that most people would embrace PHRs once they see how easy they are to use and the benefits they offer. Being “in charge” of your health is empowering. There’s a sense of pride in ownership when we are diligent monitors and protectors of this fleshy vehicle that carries us through life. Maintaining a PHR gives you a complete picture of your wellness, and with that knowledge you’re better prepared to make smarter choices for continued good health.

One final note — if you need some information to get your PHR started, remember that the Health Insurance Portability and Accountability Act gives you the right to inspect and receive copies of all of your medical records, electronic or otherwise, upon request. Ask your healthcare providers what software program they use to manage your EMR, and how you can get a login ID and password to access all of your health information. If your PCP doesn’t offer an online EMR, ask that they do so (it’s 2016, come on).

Note: A version of this article appears on the author’s website, jace-paul.com.