What is Patient Empowerment? Dialogue at AMIA Consumer Health Workgroup, Washington, DC

I always end up in the most interesting conversations when Regina Holliday ( @ReginaHolliday ) is present. And e-PatientDave ( @epatientdave ), Lygeia Ricciardi ( @Lygeia ), Danny Sands, MD ( @drdannysands ), and Josh Seidman, Ph.D. ( @jjseidman ), who by the way, I learned has known Regina longer than I, and I have known Josh longer than Regina, so it’s our destiny…

Last night, the three of us were on a panel at the American Medical Informatics Association Workgroup on Consumer Health, convened by Linsdey Hoggle ( @lindseybh ), which I understand has been on the dormant side, so this is an opportunity to see what’s possible within the organization.  We were moderated by Rita Kukafka, Associate Professor at Columbia University, who by her own admission, made things very interesting.

Note the use of technology, and by a senior, at the Washington, DC Tweed ride (Photo by M.V. Jantzen)

I presented data from Kaiser Permanente’s experience. This was very similar to the dialogue with HealthyWomen a week earlier, except a new “Total Health” image, taken by my favorite Washington, DC Photographer, M.V. Jantzen. It’s from the Washington DC Tweed Ride. In the photograph it you’ll notice two things that caught my eye – the use of technology ( Capital Bikeshare, the United States’ largest bikesharing program ), and the fact that it’s a senior citizen using it. Not all people behave as we expect them to….

Rita’s provocative question/comment to us was:

Will this (patient access) work in Manhattan? (My answer is, “why wouldn’t it?”)

and then:

“Providing information is not enough to empower people, and it also comes with responsibility that some patients cannot manage.”

So, what is empowerment? Regina stepped in to answer the question with a story from her personal life, about being given the chance to be empowered. You should definitely read her blog post about it. This is not the first time Regina has had this conversation in a room with me. I recounted something similar last December when we were told that access to patient’s healthcare data was the domain of college educated people.

The comment made by Rita a good one, and as I read in this paper just yesterday, there are definitely ethical issues that come with providing information and the “Responsibilisation” that comes with it. This is where I started in my career 12 years ago. It was the fear that self-management/empowerment/name-your-term meant “we are forcing the work of health care onto the patient so we do not have to work as hard.”

Now I feel very differently based on what I have seen/done/experienced. It is more, “We need to work hard to support patients and families, because they are doing all the work.”

I advise people not to get hung up on the word, get hung up on the feeling. Think about these concepts:

  1. Just because you don’t think your patients can’t handle it, doesn’t mean they shouldn’t get the chance
  2. “Because our patients and their families want it” is a valid reason to do things
  3. Information doesn’t necessarily empower patients; not giving them information disempowers them
  4. The prototypic “crazy mother,” as described by pediatricians (I think) in the book “How Doctors Think“. The realization is that nothing makes a mother more crazy than not telling her what’s happening with her child. I actually did a Google search for the term and I found this blog post about a mother’s experience. Imagine if every step of the way, she was not told what information her doctors had.

We could get into things like full-body CT scans and the like, and that fits just as neatly into the above, because we respect that they can understand the information that we understand, and if they say they want something, it’s up to us to have the curiosity to find out more.

Rita succeeded in her provocativeness, I admit! At the same time, I feel like we are beyond a point where we need to convince people that patients and families should have access to their health information.

I hope that the American Medical Informatics Association will represent this ideal in their future work, and if the organization feels like it can’t, Regina, myself,  and I am sure many (most) of the people at the Workgroup Meeting last night are available for a consult.

If you were there, please feel free to post your impressions in the comments, or even if you weren’t, feel free as well…


Hi Ted —

It was indeed a provocative discussion. But changing ideas takes time; although many of us feel like we've moved "beyond" a discussion of whether patients should access their data, not everyone has. And engaging in a give and take like last night's helps new ideas take root.

In response to the fears of "burdening" patients with too much responsibility via information, another argument came to mind: it's not a simple transfer, whereby the health system will do less and patients must do more. As demonstrated by Regina's story, too often NO ONE is reviewing information as closely as they should. Why not harness patient and caregiver input in addition to that of the health care providers? Particularly since patients also have a lot more contextual knowledge about the whole person's health than any provider could know.

While it is true that not all patients and caregivers will engage significantly in making decisions about their health care, many will, and the ones who will should not be held back. And the vanguard of "empowered" patients, especially people like Regina and e-Pateint Dave, who share their stories, will begin to shift the norm, making it easier for others to follow.

Ted Eytan, MD