When can patients have their data?

What a challenging conversation this can be.

Kudos and sincere thanks to the National Partnership for Women and Families and its hosted Consumer Partnership for eHealth for hosting the discussion entitled ““How Access to Information Can Empower Patients and their Caregivers” yesterday. It was the right place, right time, right group of people. I think we nearly split the atom.

e-Patient Dave in his post on e-patients.net did a nice job of summarizing the feeling on the part of the patients in the room, so I’ll just post what was going through my mind here.

After showing the images that I previously posted on this blog (you can see them here), a question was asked about sharing of lab results, imaging results, physician notes, and the like.

As you can see from Dave’s review of things, there appeared to be a difference of opinion about “when.”

The problem I see with the response of “yes, they should have their results; however…” or “yes they should see their data, but…” is that it reminds me of so many conversations I have had that go something like this:

“Ted, minorities (such as yourself) should have equal rights, no question about that. Just not now.”

That’s the reality I have lived, and I think for someone who is struggling to be respected in our health care system, this is how responses like the above can come across, as Dave’s blog post shows. This is why I turned to Dave and Regina and asked them to provide their personal experience, which they did, and very passionately so.

Instead of wondering,”Should the doctor see the results first?” let’s ask a deeper question: “When can patients have their data?” And…in more and more health systems, the answer is “whenever they want it,” with off-the-charts satisfaction on the part of patients and clinicians.

Yesterday really helped me understand that this is not going to be an easy conversation, however, I’m happy to participate in it, and invite the patient to be in the room while it is happening.

Why? Because I may have gone to medical school, but I have not yet had stage 4 metastatic renal carcinoma or cared for someone who has.


Ted, this conversation does not have to be challenging.

Physicians "merely" need to let go of one long held paternalistic and invalid assumption.

Then the conversation is over and patients will have their data.

Hi, Ted and Vince. As I read your comments and those of E-Patient's Dave that Ted cites I wondered if there are advocacy groups specifically dedicated to health data rights besides the one Ted has mentioned in the past, http://www.healthdatarights.org/ that are as effective and as well run as those who fight for Open Access to research results such as http://www.arl.org/sparc/ and http://www.taxpayeraccess.org/issues/frpaa/index….

The Society for Participatory Medicine, for instance, is good at outreach to the medical community. But are there legislative champions for health data rights and anything more substantial than the admirable but still nascent healthdatarights.org? Without such a group, not much can happen except at individual organizations such as Kaiser, right?


Then you are officially invited to sit next to me during subsequent discussions. 🙂


I think this does take more than one health care organization showing that "it's okay." Good tip on thinking about open access to research as a model!


Hi, Ted. The Open Access movement includes some really brilliant, selflessly dedicated people like Peter Suber http://www.earlham.edu/~peters/fos/fosblog.html and Heather Joseph http://www.arl.org/sparc/about/staff/joseph.shtml and there is also the work that Sharon Terry of the Genetic Alliance http://www.geneticalliance.org/ws_display.asp?fil… does vis-a-vis working on the disease advocacy front. Those people offer hope and models and are potential allies for the health data rights movement.

In my General Internal Medicine practice, I routinely add "cc: Patient" to all office notes. The patients love it and it gives me a second chance to reinforce the plan we agreed to. They can share it with family and other providers if they want, and every once in a while they correct an error in what I wrote. I have never had any negative feedback, anger over what I wrote, or the slightest hint of damage, psychological or otherwise, to a patient. If doctors start doing this routinely, the pressure to make other medical information easily and routinely pushed to patients will become greater and greater. As we raise the expectations of our patients, they raise the demands on the system.

Dr. Littenberg provides an excellent example of the benefits vis-a-vis quality improvement that flow from empowering patients. Good for him for his frankness ("every once in a while they correct an error in what I wrote.").

It is so encouraging to see you all working on this issue. I'm new to your efforts, so just beginning to follow along. A couple of points from the perspective of a patient diagnosed with a somewhat rare disorder (Sweet's Syndrome):

1. For some patients, the ability to do research on their own health and take an active part in seeking to improve it equates directly with psychological well-being, because it enables us to manage the feelings of powerlessness that often accompany illness. This might be obvious to you all, but it needs to be the direct response to the notion that seeing our data might cause emotional distress. Not knowing, and not being able to make efforts to find out, because of incomplete data, can be and often is far more distressing than the empowerment of knowledge.

2. There are many conditions (if not most) for which the jury is not in on what the data mean. Doctors, being full time health *practitioners*, cannot possibly have the time to do the research and comparisons that patients might be interested in doing for themselves; and, in my experience, those patients who are able to educate themselves on their health are also likely to try, and likely to get decent results, either in terms of improved self-care, or at the very least, better acceptance of what they might be dealing with.

2b. Medical researchers are the ones doing the most actual study of particular conditions, medications, systems, and so forth–not doctors. Again, doctors may have time to look up the patient's condition, but not likely as much time as the patient or their family has for this, and there is a huge amount of information available from researchers' published work on any given condition, which can be much more useful if taken as a whole. In particular, at the onset of my Sweet's Syndrome, I was misdiagnosed, and had to do my own research to find out enough to know who to go to for a correct diagnosis. This was the case for many of the SS patients I now know (through an online forum). The same was true for me when I was a child and had cluster headaches: because I was only ten at onset, and female, which is not typical, no one guessed what was wrong. I had to hit the books (there was no Internet back then) and figure it out before I knew to go to a neurologist who specialized in my problem (by then I was 19, and had been living with the condition undiagnosed and untreated for 9 years). This can't be all that abnormal if it happened to me twice. And I'm not trying to insinuate anything negative about GPs or emergency doctors; there are just too many things that can happen to people's health, and these doctors do quite well to know and recognize as many as they do. The catch comes when the patient needs a specialist to do the diagnosis, and it's not readily evident which specialist to send them to. Patients who are willing and able to scour the data looking for clues ought to have the opportunity.

So thanks to you who are advocating for this. I would love to help, and will spread the word to everyone I know!

Thank you, Hope. I wrote to them. I felt pretty much out of my league, but was at least able to chime in with others such as yourself, who are more knowledgeable about the particulars being addressed, and to offer my perspective on the importance of open access to data in the case of rare, or seldom-encountered disorders, where the patient must do their own research.

Ted Eytan, MD