Are You Able to Access Your Medical Information–the “Damn Data”

Why Do Doctors Keep Us From the Damn Data

Will electronic medical records (EMR) make it easier for us to have our medical records?

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:

  1. Do you research your symptoms online?
  2. Do you bring medical info printouts to your doctor appointments?
  3. Does your doctor answer your questions relative to this information or blow it off?
  4. 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?
  5. 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!

  1. Are you satisfied with the answers you get from your physician?

  2. Does your doctor engage you when determining your conditions and how to treat them?

  3. How can we create a better dialogue with our doctors when we bring information to them that we found on the Internet?

  4. 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


6 thoughts on “Are You Able to Access Your Medical Information–the “Damn Data”

  1. My doctor volunteers my blood work information, and outside of the few obvious numbers we all watch, I have no idea what all the other elements are!!!! I have used the internet to get medical information about cataracts, hernias, etc. (Am I this old?). And my doctor is always kind about answering any and all questions, will even go on line to look at what I might bring to our patient-doctor discussions. So I guess I am one of the lucky ones.


  2. You are one of the lucky ones. I think more and more docs understand. And if you were developing a serious illness, you know that this doctor would be willing to share everything with you in a timely fashion and not have you guessing. That’s always reassuring. Thanks, as always, for your comment, Bill.

  3. ASK, ASK,ASK and if you don’t like the answers ASK AGAIN. The internet saved my life literally. I have heart disease, I’ve had 2 heart attacks and have 5 stents in my heart. Without the internet research I did I wouldn’t have kept pushing doctors for answers to all my symptoms. I am 40 years old. I had my first heart attack at 38. I’d been having heart troubles for 2 years before, I’d been to the ER about 5 times in that time for chest pain. EVERYONE told me I was crazy, I had stress, I was suffering anxiety disorders… it didn’t matter that I had high cholesterol and Type 1 diabetes, was a former smoker, was 20lbs overweight AND most importantly had a grandfather die at 56 from an MI. NOOOOOOO… they all said I was too young. I couldn’t have heart problems. The longer time went on, the worse I felt. When I started throwing up in the middle of the night and suffering extreme nausea during the day, I went yet again to the internet… and there in an article from Mayo Clinic website I saw that this was a symptom of severe heart disease. Throwing up without illness or pregnancy on a continuing basis combined with nausea is a huge red flag, especially with the other heart disease symptoms I was having. I immediately found a cardiologist, who sent me to the ER and demanded an angiogram. The ER wanted to send me home, my EKG was mostly normal, didn’t show anything but an abnormal blip that the ER didn’t think was serious. My doctor had to argue with the ER doctor to get me admitted but I was admitted, I under went the angiogram and discovered I had 4 blockages, some at 99%, I was literally days away from a fatal heart attack.
    It gets better though. That happened in February of 2012. Just this past June, I was experiencing symptoms again, exhaustion, chest pains, nausea, shortness of breath… I was afraid it was another blockage. However, this time, the same cardiologist that sent me to the ER, 16 months before, told me it was ANXIETY. All my tests were normal. My Blood pressure and cholesterol were terrific, I’d lost weight, I was eating well and exercising, my EKG and echo were good, I’d even had a stress test that was perfect. My own cardiologist didn’t think anything was wrong. BUT—- I did more internet research. I found that my symptoms this time, which no included a weird, irregular heartbeat could be signs of more blockages.
    I pushed my doctor, she pushed back and gave me anxiety medication and a beta blocker to help with the heartbeat. Two weeks went by and nothing… I demanded something be done. If she hadn’t referred me to a specialist I would have found one myself.
    The specialist from the University of Chicago, ordered another Angiogram and there was another blockage at 80%.
    I am now under the care of 3 different heart doctors. One doctor specializes in only the lipids in my body. He is completely in charge of figuring out why my body is producing such serious plaque in my artery walls. My tests don’t show it….but my body is failing me.
    I had about 40 different tests run on me recently, all of which I had to research so I could understand what they were telling me.
    I have a whole new, very strict diet and exercise regime that I must follow. All my medicines have been changed and I have 3 doctors working to try and figure out how to control this odd defect in my body.
    These doctors are amazing BUT I still have to know what every test means and what every number is.
    I grew up with Type 1 Diabetes and a grandfather that died very young because he just didn’t want to go to the doctors… I know I am the kind of patient many doctors fear. I know a lot about my diseases and I am not afraid to call them out when they miss something, most of all I don’t let them dismiss me because time is running short. IF they do this, then I find a new doctor.
    Remember your doctor works for YOU. You are paying him. You can use the internet to research your health and you can also use it to research doctors and review them, they may not like the internet because people can leave reviews about the care they receive but that should make them work better!
    No one should almost die because a doctor can’t accept a deviation from the norm.

  4. Thanks for your comment, Natalie. You are part of the new phenomenon of folks who research and meet with the doctor. Though tests reveal things about our bodies, being a GOOD HISTORIAN is very important when being treated. Approaching any physician with a definitive list of symptoms and clear picture of your experience can help. And research beforehand can sometimes open doors that your doctor might have found anyway, but you just helped him. Beth

  5. Hi Dr. Berger–

    I am so pleased you saw the post. I am passionate about health and healthcare and read as much as I can to sort out the changes we face and how best patients can utilize the time they have with their physician. If I had my way, every high school student in the US would have to take a well-designed course in anatomy and physiology to better understand the precious gift of the human body. But most of us are immortal until we hit the proverbial brick wall and something negative begins to happen to us physically. Good luck with your book, Beth Havey

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