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.