The Healing Power of Your Own Medical Records

A New York Times article from March caught my attention recently about a 26 year-old doctoral student who basically saved his own life because of his persistence with requesting his medical records and doing research about his health condition. The article, The Healing Power of Your Own Medical Records, tells of Steven Keating's experience in becoming his own patient advocate, which resulted in the early detection of a cancerous brain tumor.

Eight years ago a scan of Keating's brain detected a slight abnormality, but he was told it was nothing to worry about and to just monitor it. He decided to play an active role in that monitoring, researching information about the brain and his condition, and having a follow-up brain scan three years later in 2010, which proved to be fine. However because of his research, he knew that his abnormality was near the brain's olfactory center and when he started experiencing vinegar-like smells he pushed to have another MRI scan. Three weeks after the scan a cancerous tumor the size of a tennis ball was removed from his brain. Where would Keating be today if he hadn't played an assertive role in his own health care? And what might happen to the rest of us if we only rely on the knowledge and decisions of our doctors? The possibilities could be very frightening.

“The person with the least access to data in the system is the patient,” Keating says. “You can get it, but the burden is always on the patient. And it is scattered across many different silos of patient data.”

I wholeheartedly agree with this statement. It's not always easy to get access to your medical records, especially if you see more than one doctor or specialist for several different conditions. But things are starting to change, with some hospitals/doctors/providers giving patients better and easier access to their medical information.

According to the article, one example is that some medical groups are beginning to allow patients online access to the notes taken by physicians about them, in an initiative called OpenNotes. Here's the link to the article referenced in the New York Times article about Steven Keating:

"US Experience with Doctors and Patients Sharing Clinical Notes"

In my own experience, I use an online communication program called "MyChart" for my particular health care system. I don't have access to all of my medical records and chart notes, but I do have access to quite a bit of helpful information. Using MyChart, I'm able to e-mail my doctors' nurses when I have questions about my care or need medication refills. I can also automatically request refills for the various prescriptions that I take. And I'm able to see test and lab results, which I appreciate (although I often can't understand what it is I'm looking at and reading!). However, not all of my medical records are available in MyChart, partially due to the fact that I see other doctors outside of that health care system. How do I get the medical information from my orthopedic surgeon? Or from urgent care providers? Or from the E.R.? Being forced to jump through so many hoops just to get your own information is unnecessarily stressful and frustrating and even unethical, I would say. It's my body, my health, my records--why is it so hard to get my own information? And why are some doctors so reluctant to share this information and work with their patients to help ensure the best care possible for the patient? I feel like this is one big part of the patient-doctor-provider relationship problem that needs to change. Would giving patients more access and control over their medical information cause a threat to a physician's ego (I do realize that not all physicians are egomaniacs, thankfully)? Or is it the fear of lawsuits resulting from privacy issues? Maybe it's a combination of both, or something else as well, I'm not sure.

As stated in the article, Keating is all for transparency and patients having access to their own medical information, arguing that patients feeling empowered and included in their health care can be a very healing thing.

“Data can heal,” he says. “There is a huge healing power to patients understanding and seeing the effects of treatments and medications.”

As a bit of a (jokingly self-diagnosed) hypochondriac, in my own experiences navigating the health care industry during these almost 20 years of having RA, I know that a lot of fear and anxiety and stress that I've gone through could have been lessened or alleviated if I had felt more involved in my care--especially during the first 10 years of having RA.

The rheumatologist I went to for my first decade of living with RA was not a good fit for me. He was a terrible fit, actually. But as a scared, naive, and basically clueless newly-diagnosed 18 year-old, I had no idea what was going on and I put all of my trust in him. As the years passed by, I felt more and more not listened to, disregarded, condescended to, and mostly ignored, and after 10 years I finally got the courage to "fire" him.

Luckily soon after I left that rheumatology group, I wound up finding a really wonderful, patient, and caring rheumatologist at the University of Minnesota with whom I've been very happy for the past eight years. However, 10 years' worth of physical and emotional damage had been done by the first doctor, and I firmly believe a large part of my dissatisfaction and frustration and suffering was due to his personality and poor, negligent bedside manner.

Any questions that I dared to ask him (I didn't ask questions very often), he would answer in a snide and condescending manner and tone, as though I were questioning his authority and asking stupid questions. He was also not at all open to looking into other areas of health care, such as trying alternative treatments (physical therapy, nutrition, exercise, acupuncture, etc.), and made me feel like an idiot for asking about it. This rheumatologist was only about pumping me full of prescription medications and otherwise didn't really want to talk to me about how we could work together to improve my RA and health. My theory was that his attitude and behavior was based on a majorly inflated ego and/or other insecurities or power trips he had going on. I don't know. But I do know that I should have gotten out of there a lot sooner than I did, in hindsight. At the time, though, I was a confused and trusting kid and I assumed that the doctor knew what was best. I didn't realize until 10 years later that I had therightto have a say in my own health care and that I should always feel like I have that right.

Whether you have a chronic illness or not, I believe all patients should feel that they have the right to be involved in their own care, and that includes access to their health records and information. If not to just help you feel empowered and that you have a bit more control over your health and your life, having better access to your own health information could also literally save your life, such as in Steven Keating's case. I'm happy to see that things are starting to move more in the direction of patients gaining more access, such as with the OpenNotes program and other emerging initiatives to help bridge the patient-doctor gap.

Keating feels encouraged that people will increasingly want more and better access to their medical data and they will want to share it as well, whether through social media or other online options--especially younger patients.

“This is what the next generation, which lives on data, is going to want,” says Steven Keating.

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