Wednesday, June 24, 2009

My health care records: My property

....I want my health records. I believe they are mine. And I want to be able to access them electronically. Frankly, I'd like to access them, amend them (or at least notate and comment on them), and share them with those I choose.

Recently, Dr. Rob posted about how this made him feel.

I have heard a lot of talk about ownership of medical information. Bloggers like e-Patient Dave, and Robin are strong advocates for patient ownership of their information. To be truthful, I get nervous when I hear people saying they own something I have in my possession (and I’ve blogged about this). The charts in my office are mine, right? How can I create something and have it not be mine?
Dr. Rob is an advocate for EHR/PHRs* and has used an EHR for much longer than most physicians. This is exemplary for multiple reasons, including the fact this is an expensive venture and his is a small office. But when he posted about how he was trying to make it even better for his patients, he got some comments I don't think he expected. (Sorry, Rob, we e-Patients are a tough audience. We tend to talk back.)

I commented on Dr. Rob's post:

I haven’t read the other comments, yet, so I apologize if I repeat something that has already been said.

When you made your lists, did you ask any of your patients to help you make these lists? I absolutely believe you have the best interests of the patients at heart, but you still aren’t acting in the best interest of the patient if s/he is “out there” and you are “in here”. The key words are collaboration and participation.

This phrase bothers me: “We have to have a place where we can put things down and know they are for our own eyes only.” Yes, you need to make notes to yourself, and I understand that. But if it is ABOUT me, I want to know it. If it will be passed to another doctor as part of my record, I want to know it. If only you see it, then that’s ok. We all need places to put reminders. I know this is a sensitive spot...

...Patients are people. Only in medicine is information about them hidden from them. Data is meaningless unless it is organized in a useful way and presented as such. You have the power to do that. I want my data. But I also want your organization and presentation, because I pay for that. If I have to organize it, I will in order to survive. If you organize it, I want to know how and why you did it that way. It is meaningful to me. And I want to know what others are going to read about me. Good or bad, I need to know it. It might save my life.

You see, I had good reason to say that. Multiple reasons, really. And so do many other Cushing's patients. I will relate two of them here:

REASON ONE: Lab values and lab reports may say "normal" but actually aren't.

One of the tests to check for normal/abnormal circadian rhythm and diurnal variations of normal is a late-night (midnight) serum cortisol level. When I first realized I might have Cushing's, I took pertinent research to my PCP about the use of midnight serum cortisols to test for it. She agreed to order them for me IF I could find a lab willing to do it at midnight. I arranged with a local hospital lab to come in. When my PCP got the results, she told me they were normal.

They were not normal. A few months later I requested all my records from this PCP and other doctors I had seen. When I paged through my lab reports, these midnight serum results showed my levels were high, not normal! But the lab had used afternoon ranges instead of the midnight range (close to zero) and thus did not flag the results as high.

REASON TWO: Patient records sent to other practicing physicians aren't always what the patient gets when requesting her records. Nor are they always factual.

When I saw a prominent endocrinologist after I finally realized I probably had Cushing’s Disease and had it for over 20 years, we had NO participatory or collaborative communication. I was out in 15″ after waiting months to see this doctor. I asked for and got a brief record of my visit a few weeks later. Even later, when I asked for my records from my PCP covering the last few months (I do this periodically), she included everything. And that everything included a letter and summary of my visit with the aforementioned endocrinologist.

Dr. Endo had written things in that summary and letter that were less than truthful and very different from what I was sent. In fact, what actually went on in that visit and what was in that summary/letter were so inaccurate I was floored. And angry. And hurt. The speculations made by Dr. Endo were even worse. When I told my PCP of the inaccuracies, she called and confronted Dr. Endo. Nothing was changed, nothing was done, and I was too sick at the time to pursue it. I am now reconsidering. But my PCP told me to find another endo. She would support me. And I did.

You see, not only did my record show (and still shows) I was tested and examined by Dr. Endo in ways that I was not, it also says things like “patient is depressed”, “patient reads too much on the internet” and “patient needs bariatric surgery”. Dr. Endo didn’t even ask me to come back nor was I told this. I would never have known this if my PCP hadn’t given me her records. And it’s wrong. Very wrong that I would not know this. And very wrong because I have the testing and pathology to prove it was technically inaccurate and misleading. Life-threatening.

Because this endo is a very prominent one, many other doctors took this as truth. I almost did. My PCP did not. Why? She knows me. God love her, it hasn’t been easy for her, but she has hung in there. She listens when I tell the lab ranges are wrong. She lets me send her research, peer-reviewed journal articles, and more. And she shares with me, although it’s still paper copies printed out because their wonderful EHR doesn’t allow me to look in. It is not yet participatory. But she is. And by being that way, she has helped save my life. She allowed me to peek inside. And it worked for both of us. If I had not done so, I would have believed Dr. Endo and I honestly believe I would be dead now.

As Dr. Rob, many folks on Twitter, and I discussed this, he and I realized we agreed more than we disagreed. We definitely agreed in this: If any information in my medical record is shared with anyone else, I should also be allowed to see it.

There will be many reasons touted by those who say sharing patient health records is not feasible. We discussed some of those in the comments to the aforementioned post by Dr. Rob. However, the right to our health data is not something that we can say IF about. This is must be a matter of WHEN. And WHEN needs to be soon.

Already, I ask for and get my records. At least, I get what the doctors will share with me. It takes time, money, and multiple attempts because I have to get one from one place, another from another place, etc. I would love to get it all from an online source (or sources). I want to see it all.

Will it scare me if I misread or don't understand it? Not nearly as much as being told everything is “normal” and when I get copies everything is NOT “normal”.

The patients who want this information can deal with the information. I want the right to access it. I don’t want to be forced to access it. I also want the right to point out and correct these mistakes in the same EHR/EMR/PHR. I don’t want to accuse or point fingers. I just want to participate in my own care.

What scares me is being sick and not being able to access and use the information I generated through being sick. I truly don’t think I’m in the minority. Fear is not always a bad thing. It leads to action. Nor do all have to look at their records and know what is in them. Some will, some won’t. I want the right to see and to participate.

To join in the fight for the right to open access to your own medical records, go to and endorse these rights.

A Declaration of Health Data Rights

In an era when technology allows personal health information to be
more easily stored, updated, accessed and exchanged, the following rights
should be self-evident and inalienable. We the people:

  • Have the right to our own health data
  • Have the right to know the source of each health data element
  • Have the right to take possession of a complete copy of our individual
    health data, without delay, at minimal or no cost; if data exist in
    computable form, they must be made available in that form
  • Have the right to share our health data with others as we see fit
These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient.
No law or policy should abridge these rights.
If you feel strongly about this or have a story to share, feel free to comment.

*EHR-Electronic Health Record
PHR-Patient Health Record (I like Participatory for "P")

To read more:

How Much is Too Much? (Dr. Rob)
A Manifesto on Health Data Rights
Jen's Posterous Blogroll
The Health Care Industry vs. Health Reform
“No political power center for regular people”in health reform


  1. Superb, Robin. A powerful real-world story showing why this is SO damned important.

  2. I have to say, I was surprised by the vigor of the response (even more so the poll results). That's part of the reason I blog - I get an education. I have no misgivings of giving people their records upon request, and there are a number of reasons you state why this could be important. If I were your PCP, I would send you everything I got if you requested it. It's easy for me to do this, as I can just e-mail it.

    Again, I think there is a real fear on our side that is not unjustified that we will have to take a huge amount of time justifying why we didn't comment on their low BUN, abnormal Albumin to Globulin ratio, or the facet hypertrophy causing slight encroachment on the spinal canal. There is so much interpretation that happens on our end (we act as a filter), that it seems to open the floodgates to let everyone in on it and let them try and decipher their results.

    I can't go on. This will probably end up being Monday's post.

    I really have enjoyed this discussion.

  3. OK - I must have been signed in under my wife's account somehow. It's really me who said that.

    (This is Rob)

  4. Amen Robin! I think it is important that patients have to opportunity to be proactive in their health care if they so desire. This is the information age, we have quite a bit of information that is accessible to us, and that is a good thing, not a bad thing as some doc's would like us to believe. Just yesterday I was in a major university hospital getting ready to get genetically tested for MEN 1. After meeting with the geneticist, I met with a colon surgeon. We went over the types of tumors found in MEN 1 on a spread sheet, and I noticed that carcinoids were among them. There was some speculation during my Cushing's DX that perhaps I might have an ectopic ACTH producing carcinoid in my lung. When I mentioned this to this very astute Gastronenterologist, he said there was no such thing, and that carcinoids do not produce ACTH. He was adamant, I knew different. How often do we encounter physicians that are ill informed regarding rare diseases? For this reason alone I think it is imperative that we have access to our medical records and doctors comments regarding test results. Just because the Doctor orders them, doesn't mean that we should not be privy to the information contained in them. Had I not obtained my testing results from my PCP when I was looking to change Endo's, I would never have been diagnosed with hyperparathyroidsim because my prior Endo had ignored the repeated elevated serum calcium levels. His response was that "it wasn't THAT high" By the time of diagnosis, my bone density at 38 was that equivalent to a post menopausal 60 year old. Doctors are not perfect, nor are they infallible. We cannot continue to place our health in their hands blindly. This is a medical emergency, and I hope some real changes are made in this regard.

  5. Rob, what a valuable comment. I know during my illness I asked questions that turned out to be ignorant - misunderstanding that "craniocaudad" meant a dimension wasn't what I thought, etc. At the time I was somewhat embarrassed but SO grateful to my physician for accepting my questions. Honestly, since I was pretty much headed for death in a few months, a lack of that acceptance would have left me feeling that much more helpless.

    Great comment from you too, Cynthia.

  6. Love the responses from all. Rob, I know you are worried about accusations made by patients and having to justify non-comments as well as comments. This is a learning curve for us as patients and I appreciate your candor. My hope/dream/desire is that we can work together--doctor and patient--collaboratively, not accusatively.

    When I see something on my records/reports that cause me to question why my doctor did or did not react the way I think s/he should, I ask first before responding in any other way. Sometimes (like with the lab reports) it was a very honest response by the doctor. I totally understand her trust in the given lab ranges. I don't expect her to know they were wrong values. I do expect my endocrinologist to know that, though.

    I think the greatest fear that I'm seeing from doctors is the necessity of change to a collaborative relationship with patients. No longer do just doctors have access to a once proprietary knowledge base. Now we all can access it. Thus, the transition to the collaborative nature of that relationship has to happen. There is no turning back.

    Cynthia and Dave, thank you for your comments.

  7. Let me provide another example of why direct patient access to patient records is critical.

    I had pituitary surgery last fall at an internationally renown facility. In recovery, the first thing I remember coming out of anesthesia was an attending standing over me and demanding an explanation as to why my heart rate was so high. I developed pneumonia (49% ABG at 21 liters). I was repeatedly told that my hormone levels were normal post-op and the only issue I had was the pneuomonia. Since I had previously had liver problems on the anti-biotic I was being given, I repeatedly asked that I be monitored with liver panels. I was discharged and flew home. My local doctor was sent a letter saying I was well and no post-op testing was needed.

    I did not recover well. My heart rate remained tachy. I lost even more muscle than I had lost before surgery. I went to the ER and was found to be severely hyperthyroid. I had a second ER visit. Eventually, the thyroid levels normalized and I still had heart issues, to the surprise of all. I was referred to two different cardiologists, had thousands of dollars of tests.

    All the while, I was trying to get my records from the hospital where I had surgery. Remembering the recovery room comments, I was sure that my records would help my current doctors figure out what was wrong. I got nothing but stonewalled. My new doctors got nothing but stonewalled. The hospital "investigated" and sent me a letter saying my post-op care was appropriate and that the instructions to my local doctor had been accurate. Eight months after surgery, I finally explained that if they didn't send me the records, I would sue them and then a judge would make them hand over the records. They handed over the records.

    What did I find. A number of surprises.

    Surprise one was that my hormone levels were not "fine." My cortisol levels were much lower than I had been told - and I certainly needed steriod supplementation that I did not receive. I was also severely hyperthyroid.

    Surprise two was that my bloodwork was terrible and my oxygenation was even worse. My ABG was at 49% at 21 liters of oxygen. My potassium at discharge was at 3.0 and dropping, as was my hemoglobin and hematocrit. My WBC was high and climbing. I was spilling ketones and glucose in the urine at a high rate. No liver panels were ever ordered to make sure that the antibiotics weren't doing damage. None of my abnormal labs appear to have been repeated and verified as normal before my discharge. (Continued in next comment)

  8. Continued from previous comment:

    Even a bigger surprise was the cardiac workup. An EKG that mentions "anterior infarct," a BNP (a measure of left ventricle distress) at 310 -- a level consistent with heart failure, and an elevated tronopin level. My d-dimer was also high. None mentioned in the post-op info to my local doc. None resulted in any follow-up before discharge. All of these test results certainly would have been helpful information to the doctors treating me at home, including the ER doc who was left to rediscover a diagnosis that should have accompanied me home. If I had been informed of these test results before discharge with no evidence that they had normalized, I would never have boarded a plane for a five hour flight home only several days later, given that a flight would further increase the risk of stroke. Ultimately, what risks I take with my life should be my decision.

    Doctors are busy. Apparently some doctors in major hospitals are too busy to make sure that a patient who is post-op brain surgery and showing signs of cardiac failure and respiratory arrest is OK before discharge and shuttling them off out to a hotel to be by themselves for several days and then onto a plane. The only backstop to this is to make sure that the patient is provided access to his or her own labs in a real time manner. Only the patient has the full incentive to make sure that information gets where it needs to get. Certainly, I would want to make sure that anyone who read my discharge summary was informed that it was grossly incomplete before they relied on it.

    As for the doctors who feel that having to provide this information is too burdensome, think of the unfair situation presented to my local doctors, who were left to treat me with puzzling symptoms, in the dark, with less than all of the facts. Disclosure to patients doesn't just help patients, it helps doctors too.

  9. A terrible and frightening story from anonymous. I am all for patients having access to their recirds- completely- but not so that they can be the guardians of their care. That is not their responsibility and it is not fair to place this on them. If we were to rely on this then many patients without the skills to critique their care would be left with substandard care, although they were given full access to their records.

    We need better information sharing between all those involved in caring for patients, including primary care staff.

    And we must remember that it os our privilege to care for patients and we should always be trying to craft that care to be as good as possible.

  10. And the post-scrip. I am formally a patient of a major teaching hospital. I wanted to see my endo because I have previously had high, but not diagnostic catecholamines. Seemed to me that this latest, although belated, information might clarify the clinical picture. Guess what, I can't get in with the experienced endo-- I am being dumped on a three day old fellow to have him/her clean up this mess. Whether fair or unfair, it is clear to me that I have no choice but to be my own doctor, which means that I need to have all of my test results. That is the reality of medicine today.

  11. Robin, I really enjoyed your post. While I am not a doctor, my background is in bioinformatics and Health IT, and in the past I tended to side with the doctors on this one. Why? In part, because I haven't ever really needed my data. But also, giving patients not just access, but ownership, of the data is complex and risky. Complex, not because the technology isn't possible, but because it would require a lot of time, money, standardization, etc. Risky, because a patient might misinterpret the data, might take his data elsewhere, or worse, might realize there are errors in it!

    Your blog and the experiences of many others, like ePatient Dave, provide a compelling argument for pushing hard to bring transparency into the system. While complete data ownership should be the goal, I get overwhelmed just thinking of how complex that issue is. But the benefits of just giving each individual free, transparent, and consistent access to their data has the potential for a large scale transformation of personal health behavior. This patient empowerment could, in turn, enable the system to move towards patient data ownership. Your thoughts?

    Thanks for the great posts. I look forward to reading more.


  12. Hi, Jon. Thank you for your input! There is a great discussion ongoing on the e-patients site which discusses a lot of what you just said:

    Doc Searls: patient as platform and “point of integration”



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