Focuses on the value and impact of empathy and related skills, particularly in health care settings. Topics will include clinician-patient communication, patient-centered care, patient activation, health behavior change and clincian-patient relationships.
Saturday, October 15, 2011
Personal Health Records: Another Path to Empowerment
In my latest column in the October issue of MPN (Myeloproliferative Neoplasms) Forum, I share ways in which I have used a Personal Health Record (PHR) to track information about my condition. Using the tools available in PHRs, I can create graphs that show the relationship between treatments and key lab values. Sharing these graphs with my physicians not only helps us to make better decisions about my treatment, it also saves time and allows us to focus on what's important to me, including my feelings and concerns about my condition. My doctors have been very receptive to my use of these tools, and I have benefitted from the increased time they havefor empathy!
Note: the link is no longer working, so here is a version of the article:
The Empowered Patient – MPN Forum
October, 2011 – Draft 3
Personal Health Records: Another Path
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. See below for one of the graphs I brought with me to
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!
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
•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
For an example of a PHR that you can
complete online and download, seehttp://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 utilizing PHRs and related tools. Please share your
experiences, ideas and comments here.