In a recent Kevin MD post, “Doctors Should Give Patients Their Damn Data,” Dr. Zackary Berger discusses the need for all patients to have access to their medical information and test results. He zeros in on past history when medical personnel were often reluctant to share information and/or the cost of that sharing was passed on to the patients who were charged for copies of their medical reports. (As recently as January 2013, I had to pay ten dollars for a CD of an x-ray.)
But that is rapidly changing, the Internet being a major player. Before the net few ordinary folks had access to medical information. The Internet has proved to be revolutionary, allowing anyone access to medical terms and explanations and over time changing the relationship between doctor and patient. Because of the net:
- Do you research your symptoms online?
- Do you bring medical info printouts to your doctor appointments?
- Does your doctor answer your questions relative to this information or blow it off?
- Do we do this because historically we didn’t have all the data needed to understand medical conditions and we often left doctors’ offices with unanswered questions?
- Finally, how did this phenomenon get started? Possible answers—every person wants: a. control, b. immediate information and c. to be able to alleviate some fear.
In the late 1940s, my father started having cardiac symptoms—occasional chest pain, left arm pain. A series of electrocardiograms (EKG), the standard test at that time, always showed normal cardiac function, normal sinus rhythm. But on a Sunday morning in June of 1950, while experiencing the same pains, he slumped over and died of a myocardial infarction, massive heart attack. He was only 45.
That’s my personal answer for why we research. It’s the reason that as I grew (I was only 3 when my father died) I tried to piece together the cause of his early death. It is part of the reason I became a nurse and the reason I go to the web often to search out answers. I want some control over my own symptoms, yes. I don’t like waiting for a doctor appointment to KNOW something—even if what I find is only part of the story. I realize that in the 1950s there was nothing to save my father, but now it’s me and my family and I am human—I want to find some control.
I was an RN when in 2002 my husband was diagnosed with a type of leukemia. His internist told him little, so I grabbed my Med Surg book to see what we were dealing with. It stated that these patients had under 5 years to live—I panicked. But then I immediately went to the web and got a much better forecast, because it was current, my book out of date. Certainly, we can get the wrong information from the web, but the more you search, the more you learn how to find sites you can trust.
This past week, I had an appointment with a new internist and I cannot say enough for her. Though I didn’t have any “printouts” with me, I did have lots of questions that she was more than willing to discuss with me.
Educating yourself about aspects of your health is a good thing to do before you see the doctor. Historically doctors had the upper hand, even using medical language that further confused a patient. We were on the outside looking in. The relationship was blind trust. Certainly, we want the best-educated doc we can find, but we also want to understand what she is saying to us. Walking in with some basic knowledge can help.
Dr. Berger underlines this: “So it’s time for patients to step up and ask for what we deserve. If there are medications prescribed, we should know how, when, and why. If there are tests to be ordered, we should have the results in hand. We should even have unfettered access to our medical records—this last expectation has a slogan attached, too: ‘Give me my damn data!’”
Having access to the data makes you aware of what screening tests you might need and saves time when seeing specialists and other doctors. And now with Electronic Medical Records (EMR) there are many programs to help doctors, medical offices and hospitals stay connected.
Bottom line: things have changed: doctors giving over some control to patients—a good thing because it forces us to become more responsible for our own health. Ignorance is never bliss.
There are some pitfalls that will have to be worked out. Dr. Berger writes: “…there are two big problems with the assumption that our ‘damn data’ will soon be widely available to anyone who wants it.” He elaborates: first, not all Americans (55 million or 22 percent of the population) have regular Internet access, mentioning that it’s not always safe for “unconnected” patients to access info on public computers—they are not always secure. And the second problem is that there are doctors and other medical professionals “…who are not accustomed to using it (technology)—and thus what is supposed to be a conduit to a new age of open data might become yet another barrier to our relationship with the doctor.”
For me there’s a third, a more subtle problem still out there—control. Doctors spend years being educated in their chosen field of expertise. Some don’t like being challenged by a client who has read a few articles on the net. And some doctors that I have talked to scoff at the very content we are reading on the net. Even if you say: “But it’s the Mayo Clinic?” they might answer that it is watered down information. My answer: well, that’s a start!
Jump in and comment please!
Are you satisfied with the answers you get from your physician?
Does your doctor engage you when determining your conditions and how to treat them?
How can we create a better dialogue with our doctors when we bring information to them that we found on the Internet?
Are you able to access your medication information?
Thanks to Dr. Berger More information in Dr. Frederick Southwick’s book, “Critically Ill:A 5-Point Plan to Cure Healthcare Delivery”
Thanks to Google Images