MPH Project - Part 3

Part 1 - motivation for the paper

Part 2a - current US maternity care quality measurement

Part 2b - literature review of consumer desires

We have arrived at part 3: sophisticated commentary by yours truly.

If you have been reading along, you may have already noticed that the bullet points in Part 2a and Part 2b do not have much overlap. In other words, the things that The Man measures and reports about maternity care are not the things that The People say they care about when you ask.

• We measure and report things like obstetric trauma rates, cesarean rates, low birth weight rates, and elective early delivery rates.
• We say what's important to us are things like communication, control, and relationships.

I don't think it's the case that consumers don't care about things like obstetric trauma. It may be the case, though, that consumers consider safe, quality, evidence-based care to be a given, and hence don't even think to list these things when asked what's important.

You might say, then, that the solution to the mismatch is to educate people, to teach consumers that safety and quality in their medical care is not a guarantee, and show them how to use the existing measures to make educated decisions about their care. This is the tactic that the maternity care shared decision making initiative I was working on is taking, and I think it's really valuable.

But I think the mismatch is symmetrical. It's not just important for consumers to "wise up" and appreciate the technical safety and quality data. It's also important for those who are measuring and evaluating maternity care to listen to consumers on the subject of what they want to know.

I call this "patient-centered quality measurement," and I see it as a good fit with many of the other activities that e-patients and patient advocates have undertaken in recent years. "Nothing about me without me" should include the way you measure and evaluate the care I am going to receive.

Consumers clearly want to know about more aspects of maternity care than are currently measured. Can you imagine what it would be like if you really could look up information about how patient-centered your prospective hospital was, or how good a communicator your potential midwife was? (It's always a little hard to tell, but I don't think this is just me geeking out - this would be really engaging, right?)

PS. I said I was going to review my recommendations to the federal government, and I don't want to disappoint, so here they are:

1. Adapt the federal Hospital Compare patient experience survey (HCAHPS) for maternity care, start oversampling maternity care consumers, and report these results separately.

2. Create a new set of AHRQ measures about patient experience/patient-centeredness. Involve consumers in this project!

MPH Project Part 2b

Part 1

Part 2a

Next comes the interesting stuff (depending who you ask, I suppose). I did an informal literature survey trying to answer the question "What do maternity care consumers in the US say they want from their care?"

This question was intended to be an answerable proxy for the un-researched question I really wanted to know the answer to: "What kind of quality measurements do US maternity care consumers want?" (And the followup question, "Are those desires being met by current quality measurements in maternity care?")

(SPOILER ALERT:

No.)

The scope of the paper needed to be fairly circumscribed, but interestingly, limiting the data to US only was almost too much - I ended up with under a dozen papers, several of which were not general populations (people who gave birth at home, grand multiparae).

Nevertheless, I was able to draw out some recurring themes from across these studies, most of which were survey- or interview-based. Here's the cheat-sheet version.

Maternity care consumers care about:

• the character of the relationship with their provider: this person should be a good listener and communicator, and be validating and supportive. She should enable shared decision making and personalize each interaction.
• experiencing control: the concept meant different things in different studies, but consumers generally wanted to experience control in their maternity care. For example, this could mean feelings of personal security or decision-making responsibility, or the ability to determine the course of labor and birth.
• having enough information: consumers wanted to be given enough information to participate in decision-making, and they wanted to receive information from all of their care providers, including labor and delivery nurses.
• patient-centered care: consumers wanted their care to be organized and delivered in a patient-centric way. For example, providers should listen carefully, show respect, and spend enough time on each visit.
• safety: interestingly, the desire for safety was mentioned only in the articles studying people giving birth at home and grand multiparae.

Next time: What do we make of the fact that (most of) these concerns are essentially not at all addressed by current quality measurement?

MPH Project - Part 2a

Find context and Part I here.

The next section of my culminating project included two parts:

• first, information about the major existing quality initiatives and measurements in US maternity care, and
• second, a literature review intended to answer the question: What do people in the US want from their maternity care?

The first part was an exercise in achieving brevity even within the fairly generous confines of the assignment; here it is going to be barely more than a list.

Major public initiatives

• Healthy People 2020 - a once-a-decade project that measures a pretty incredible number of health indicators and sets goals for improvement. In the area of maternity care, it currently includes objectives and national-level data for various fetal and infant death measurements, a maternal morbidity indicator, cesarean births, low birth weight and preterm birth (including births at appropriately-equipped hospitals), prenatal care and several prenatal health behavioral indicators, postpartum home visits, several breastfeeding and breastfeeding support measures, percent of pregnant women receiving flu shots and HIV testing, and iron deficiency in pregnant women. (If you've never been to HealthyPeople.gov before, go check it out; it's nicely put together and will give you warm fuzzies about the government, something we can all use a touch of now and again.)
• AHRQ measures - The Agency for Healthcare Research and Quality has established standardized measures in several categories; 11 measures relate to maternity care, including low birth weight rate, four measures having to do with method of delivery, three having to do with (physical) obstetric trauma, and three measures of neonatal care quality. Note: AHRQ doesn't collect data itself using these measures; it provides them to other organizations as standardized ways of looking at their own data. For example, a state might report on its hospitals' achievements on one or more of the AHRQ measures.

Major private initiatives

• The National Quality Forum, similar to AHRQ, has a set of 14 perinatal care measures that have undergone stringent consensus processes. They include elective early delivery, cesarean rates, breastfeeding, and several infection-prevention and prematurity-related process measures. Also like AHRQ, NQF does not collect data using these measures.
• The Joint Commission (JCAHO), which is the largest hospital accrediting organization in the US, recently created a set of five perinatal care measures: elective delivery, cesarean section, antenatal steroids, bloodstream infections in newborns, and exclusive breast milk feeding. Beginning in 2014, hospitals with more than 1,100 births annually that are accredited by JCAHO will be required to report their quality data using these measures. Furthermore, JCAHO reports the data they collect to the public! Woohoo!
• Leapfrog and Healthgrades are two of the best consumer-oriented hospital quality resources currently available, although neither has complete data: Leapfrog data is reported by hospitals that choose to participate; Healthgrades purchases all-payer data for some of the states. In the area of maternity care, Leapfrog currently provides measures for experience with very low birth-weight babies, elective early delivery, episiotomy, jaundice screening, and blood clot prevention for cesarean deliveries. HealthGrades reports complication rates following vaginal and cesarean delivery, newborn survival, volume, and cesarean rate.

Unreported Measures

Here are two major ideas from the scholarly literature about measuring maternity care quality. As far as I know (haven't looked extensively or recently, though), no large jurisdictions are regularly collecting and reporting using these measures.

• The Optimality Index is designed to measure maternity care quality with the presupposition that "non-intervention in the absence of complications" is the goal. It awards points on 41 items from prenatal care through newborn outcomes and yields a single percentage score for a group of births, allowing (in theory) comparisons between facilities, states, etc.
• The Adverse Outcomes Index is designed to measure major bad outcomes in maternity care without the small numbers problems that come from looking at e.g. just maternal mortality. It measures ten adverse events and yields a single summary score.
• (There has also been tons of work trying to figure out what the best way is to look at quality in the area of delivery method (cesarean or vaginal). Recently, there has been momentum toward using the "NTSV" (nulliparous, term, singleton, vertex) cesarean rate. This serves as a sort of crude risk-adjustment since it eliminates e.g. twin births, breech births, VBAC candidates, preemies, etc.)

A few takeaways and summary points:

• Where data is reported, it's often not useful for a consumer trying to pick a facility. Either the data is not offered at the facility level (e.g. Healthy People), or not reported uniformly (AHRQ measures), or not available for all the facilities one might want to compare (e.g. Leapfrog). The new JCAHO requirement is really exciting because it avoids most of these problems (it won't have all hospitals, but it will have a lot).
• There are plenty of good measures available, but not enough coordinated action to use the measures to gather and publicize comparative data. Hint: this might go better if we had something resembling a national healthcare system.
• Even the best consumer-oriented resources often need caveats. For example, although this has been corrected, HealthGrades used to give a higher score to hospitals with a higher volume of cesareans on the assumption that more experience is better. (This might work for e.g. heart surgery!) This is an extreme example, but similar interpretation problems are very common.

This post is already too long, so I'm going to break it into two posts (ugh). Part B will cover my literature review.

An overdue overview of my MPH project (Part 1)

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.