I propose a research study on disclosure policies in Kansas

Let me review what has been said about policies in Kansas for disclosure of harmful medical errors and unanticipated medical outcomes: (1) My family has been told by representatives of the hospital which treated my father that state law prohibits them from talking to us about my father’s care, because this would violate the peer review statutes. (2) During this conference call, the concern about disclosure violating the peer review statues was again voiced. (3) In testimony before Kansas House Committee on Judiciary last Monday, it was said that hospitals and physicians are already doing disclosure, so a state law is not needed.

Clearly, something does not line up. I suspect that no one knows how many hospitals in Kansas have disclosure policies, because very few hospitals in Kansas are accredited by the Joint Commission (which has required disclosure since 2001). And I suspect that no one has a sense of the content of the policies that do exist. And that lack of knowledge is a problem that can be addressed with a research study.

I propose a study for the purpose of answering two questions: (1) How many hospitals in Kansas have disclosure/apology policies? (2) What is the content of those policies?

Here is the methodology I envision: Each hospital will be sent a survey asking if they have a disclosure (or disclosure/apology) policy. Hospitals that answer “yes” will be asked to attach their policy and give the date the policy was implemented. A research team will collect the results of the survey and analyze the content of the policies. The analysis will determine how each policy addresses (or does not address) issues such as (a) whether disclosure is mandatory or optional, (b) words or phrases to be said (or not to be said) during disclosure conversations, (c) the time frame for disclosure, and (d) who is to be present during conversations.

I have never seen a study that examines the content of a large number of disclosure policies. So this work would really make a contribution to understanding disclosure policies in a state that does not currently require disclosure policies. But for this study to be meaningful, it would require a very high response rate. That would require buy-in from hospitals. And I think that Chad Austin from the Kansas Hospital Association and Jerry Slaughter from the Kansas Medical Society are the people who can make that happen.

A few more details in planning this… I will take the lead authorship on this work. Chad Austin and Jerry Slaughter should definitely be co-authors. I have contacts here at the University of Washington who have expertise in the area of medical errors and disclosure, so I am sure that we can get more people interested in this. I say that we tentatively plan on publishing in Health Affairs. As far as a timeline, I am fairly busy until I finish my dissertation work late this summer. But if the survey is sent out in June, then by August it will be time to start data analysis, which is good timing for me. If we estimate three to four months of data analysis and three months to write the paper, that means we should be able to submit for publication in early 2015. As far as funding, I am willing to donate my time. We will have to look into the funding situation for other people who might help with data analysis.

Other points we need to consider:

  • Should this be restricted to hospitals? What about including ambulatory surgical centers and recuperation centers (which are also classified as “medical care facilities” in Kansas)?
  • How much of the data about policies should we share publicly? I see three options: (1) All policies are made available to the public, (2) The policies are made available, but information identifying the hospitals will be removed to anonymize them, (3) Selected elements of each policy will be extracted, and only these elements will be available for secondary analysis by other groups.

Once this phase is complete, a second phase could begin to ask more interesting questions of the hospitals that do have policies. For example: Why did you develop a policy? How did you develop the policy? Who oversees carrying out the policy? How do you train people to understand and use the policy? Are there disconnects between the written policy and what actually happens in your hospital? How often do the disclosure conversations take place? Are you satisfied with your disclosure policy? (If not, what would you change?) Has your policy been revised since it was first introduced? (And why?)

Of course, to really understand the state of disclosure in Kansas—from both sides—it would be necessary to talk to patients and families who have been through disclosure conversations with these Kansas hospitals. And that would need to go through at least one institutional review board, and doing that work would require a substantial research team (and funding). So let’s hold off on that part and call it “phase three”.

So, who’s in?

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