International MPN News, Science & Opinion

The Empowered Patient

Personal Health Records: Another Path to Empowerment

by Michael Goldstein, M.D.

Just this week, I prepared for my PV follow-up visit with my oncologist by printing out computer-generated graphs of my cbc results over the last 5 years. The graphs included labels indicating when I had started and stopped HU and made changes to my dose of interferon.

Using this handy graphical representation of my response to treatment, both my oncologist and I were able to “see” where I was in my treatment. As a physician myself, I have an advantage as I have more understanding than a typical patient about the meaning of blood tests and medical events. Also, my oncologist, who is on the Brown Medical School faculty, knew me as a colleague for many years before I became his patient. We respect each other’s expertise, and once I became a patient, we had long conversations about my PV and its likely course and prognosis. I bring him articles and share the latest findings from hematology/oncology meetings, which he appreciates. He once remarked that he should get continuing medical educational credits for my visits with him!

As a physician, it has always been important for me to feel prepared so I was making the most informed decisions with my patients. This need for preparation has carried over to how I approach the management of my own condition. Having reviewed the graphs the night before, I was prepared to remind my doctor that we had started Pegasys 2 years ago, and that we had made the last dose adjustment in May. We looked at the graphs together, which showed that my PV remission, initially achieved with high doses of Pegasys, has been maintained as I have gradually reduced my weekly dose.

The time we saved by not having to search through my chart for the dates and data was devoted to discussing my symptoms, feelings and my preferences for treatment. We agreed to continue a slow taper of Pegasys and to recheck my JAK2 allele burden once i completed 6 months at my current dose. My oncologist marveled at my quite rudimentary spreadsheet, created from an online Personal Health Record (PHR) program. He asked me if he could make a copy of the graphs to scan into my chart, remarking, “I wish all my patients brought in graphs like these!” The good news is that we all can! And, there is evidence that if we monitor and track our own medical data, we can improve the quality and safety of our care.

In previous columns, I have focused on strategies that we, as patients, can use to help us get the most out of our visits with our doctors and other members of our health care team. Preparing for clinic visits, asking questions, sharing concerns, and being assertive about our needs are strategies that can help us to take a more active role in decisions about our care, and can help us to learn to cope with and manage our conditions. This is one path to empowerment, one that takes advantage of interactions with members of our health care team. Yet, many of us see our doctors only a few times a year, and there may be only a few minutes available for us to use these strategies, even if our doctor obliges. Thankfully, PHRs are available to help us take a more active role in our care.

PHRs are health records that are designed to be used by patients, in contrast to medical records created by doctors, hospitals or clinics to keep track of and document our health history and care. I’m sure most of you have seen at least snippets of your doctor’s chart notes or an oncologist’s consultation note, or perhaps a lab or x-ray report. These medical records are full of highly technical language and obscure abbreviations that only a health care professional can fully understand.

Before the advent of electronic health records (EHRs), many were illegible, too! Because these “clinician-facing” records are not understandable to most of us, they have limited utility for helping us to manage our conditions. As an example, I recently got a copy of my eye exam after developing some new visual symptoms. Despite being a doctor and also the son of an eye doctor, I couldn’t understand all the notations and abbreviations used to document the findings from my exam! And, unless you currently get your care in a very forward thinking health care organization, these medical records usually don’t provide graphs like the one I created myself. They are even less likely to include the information that may be most meaningful to you, like the names and contact information of key people in your lives, your use of non-traditional forms of healing, or your health care preferences. And they are even less likely to mention your life goals and values (e.g., what’s really, really, important to you) or your ideas for optimizing your health (e.g., engaging in more physical activity; spending time with grandkids). PHRs, because they are designed for you, often include this information, and more!

Typically, PHRs help you to keep track of key health information, including data about your:

  • allergies and adverse drug reactions;
  • chronic conditions (including your MPN);
  • family history;
  • illnesses and hospitalizations;
  • laboratory test results, imaging reports (e.g. x-ray), pathology reports (e.g., bone marrow biopsy results);
  • immunization records and records of preventive screening tests (e.g., mammography results);
  • medications and dosing, including over the counter medications and herbal remedies; and
  • surgeries and other procedures.

Having all of this information available to share with new providers, or in emergencies, is invaluable and can reduce medical errors that result from depending on our memory at a time when we are ill or stressed. Simply have this historical data in an easily accessible form can be empowering, both to us and our health care team.

Some PHRs, particularly electronic versions, go a lot further than just storing key health information and data. These advanced PHRs are interactive and provide electronic links to relevant health information, offer tools and resources for self-management, warn you about potential drug-drug interactions, remind you to obtain medication refills and obtain needed tests, and allow you to make appointments with your providers. Some even provide you with access to your providers through secure electronic messaging, a form of email that protects your privacy, allowing you to ask questions of your health care team or report concerns directly to them. Being able to communicate with your health care team between face-to-face visits and outside of the limitations of telephone calls is freeing and, in systems that embrace this approach to communication, increases the chances that you can get the information you need in a timely way. Now that’s empowering!

A colleague and friend, Susan Woods, MD, works in the area of Medical Informatics, en emerging new field that focuses on using information technology to enhance the quality of medical care. Sue has a blog called Shared Health Data http://www.sharedhealthdata.com/ that I highly recommend as a source of news and developments in this rapidly growing field. Several columns on her blog focus on PHRs and other “patient-facing” medical informatics tools.

For an example of a PHR that you can complete online and download, see http://howsyourhealth.com/. This site, which was developed by health care professionals at Dartmouth Medical School, uses questions and assessments to gather data about your history, symptoms and function and then provides you with feedback and links to resources. Some health care plans and communities allow you to share your howsyourhealth record with your providers. Other online PHRs and related tools are available through Microsoft HealthVault at http://www.microsoft.com/en-us/healthvault/.

I am curious to know how members of our MPN community are using PHRs and related tools. Please share your experiences, ideas and comments here.


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© Michael Goldstein, M.D. and MPNforum.com, 2011. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Michael Goldstein, M.D. and MPNforum.com with appropriate and specific direction to the original content.

Comments on: "The Empowered Patient" (1)

  1. Ellen Jacquart said:

    Michael, I’m using a simple Excel spreadsheet to track HU dosage and platelet levels, but it’s a little too simple for what I need. Or more likely, I’m too simple. For some reason, I’m limited in the graphs I produce to only about 100 days – any longer than that, and the data is just cut off. I can’t figure out how to make a graph that covers the longer time periods I need. Thanks for the link – I’ll check you ‘hows your health’ soon.
    Ellen

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