For a final degree requirement for my MPH last year, I wrote a paper arguing for the need for patient-centered quality measurement in maternity care. I'm considering revising a version of this paper and submitting it for publication, so lately I've been re-engaging with the ideas. I thought it'd be a good exercise for me to write up a lite version for the ol' blog.
I will be doing substantial edits before submitting it, but here I am sticking fairly close to the content of the existing paper. The requirements included tying my topic to a motivating professional experience and making a series of recommendations. I decided to aim high and school the feds on how they should fix things - probably I will not be doing this in version 2.
I'm realizing this is a lot to cover, so I'll do a mini-series.
Part 1: My motivating practicum experience (this post)
Part 2: What the US is doing right now to measure quality in maternity care and what maternity care consumers care about (literature review)
Part 3: My recommendations to Uncle Sam and closing comments
Part 1: My motivating practicum experience
For my MPH practicum, I worked with Childbirth Connection and the Informed Medical Decisions Foundation on the early stages of an ongoing project creating online, interactive decision aids for many important decisions one encounters in the course of seeking maternity care.
- Decision aid: can take many guises, but essentially, a tool that helps walk a user through the process of making a medical decision, especially where there is not a single clear best medical path
The decision aid I worked on was about a very early maternity care decision - where and with whom to give birth (e.g. birth center, hospital, home; family physician, midwife, obstetrician; and combinations thereof). This decision is unique because even after you decide e.g. hospital with a midwife, you still have to pick a specific hospital and perhaps a specific midwife in your local area.
This is a choice that should be an informed one - something more than "Hospital A is nearby" or "Midwife B is the first one listed that my insurance covers." Part of my practicum work was to compile and annotate resources on a state-by-state basis to help people make this decision. Especially for hospitals, there is - in theory - a fair amount of data publicly available to help maternity consumers* compare their local options.
What I found, though, was that even though this data exists, it was in general exceptionally user-unfriendly.
- Measures were rarely explained and often unintuitive. For example, many sites provided data on the average length of hospital stay. Should this be long or short? Consumers might assume that longer is better - you don't want to be kicked out of the hospital after giving birth before you're ready. But it turns out that a shorter average length of stay is better, because it means that fewer people had complications requiring long stays.
- Many websites were difficult to use. Often you would have to know the medical billing codes to look up data such as hospital cesarean rates. Clearly, in these cases, the idea of "let's make this public" fell way short of "let's make this useful."
- In order to be useful in making a decision, the data has to be comparable from hospital to hospital. To do this fairly, it should really be risk-adjusted to accommodate the fact that different hospitals serve different populations. However, this was rarely done.
My conclusion from all of this is that the maternity care quality data that is available to consumers, even though there's a lot of it, is in general not very usable.
Then my paper took a bit of a turn based on a very insightful comment at my practicum poster presentation (I am totally 5 days pregnant in that picture, coincidentally). If our goal is to provide data for maternity care consumers to use in choosing their providers and shaping their maternity experiences, maybe we should be checking to see what they want to know.
- Here's how it currently works: professionals say, "Ooh, we can measure X. And it's important! Let's do it."
- Here's how it maybe should work: maternity care consumers say, "Ooh, we'd like to know about Y. Can we figure out how to measure it?"
So my goal became to compare the measurements we currently have with what (a literature review suggested) consumers might want to know.
*I am not entirely comfortable with the term consumers in this context, as it kind of implies that medical care is or should be a normal market. I chose to use it partly because it is sex/gender-neutral and I like to avoid supporting the assumption that only women seek and use maternity care.