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 HealthDataRights.org and endorse these rights.
If you feel strongly about this or have a story to share, feel free to comment.
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:
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.
- 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
No law or policy should abridge these rights.
*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
The Health Care Industry vs. Health Reform
“No political power center for regular people”in health reform