Monday, June 30, 2014

See you in a while.

Well, first I got all caught up on Facebook and Feedly. Then I swung by Twitter, Tumblr, and Instagram and finally, went on a little Buzzfeed binge. Now I am going to write this post.

And then I am going to take an internet break.

I have been thinking about the many good and bad things the internet has brought to my life.

Good things like, oh you know, my interests in birth, feminism, and social justice. Help in trying not to be a racist. An awareness of the dik dik and unschooling. xkcd, The Fat Nutritionist and Hyperbole and A Half, Swistle and Blue Milk. Stuff. Whatever. Lots of good concepts about parenting. Really a lot of completely amazing people that I would love to meet in real life one day but wouldn't ever have to because they are my very real internet friends and acquaintances, and that's enough.

But I have also been feeling lately that the way I interact with the Internet is stealthily stealing something from me. I feel like I used to be a lot more curious and motivated to learn. I used to have a much longer attention span. I think maybe the instant gratification and instant answers on the internet are ... sapping me somehow.

This isn't "I used to read real books," although I'm hoping I can use some of my non-Internet time to read more books.

It's also not "I should make more real friends," and in fact one thing I'm hesitant about here is that I really do want to make some local friends and frankly the best place to do that, by far, is online. What, am I going to place a classified ad? Hang posters?

This also isn't "purify my life." I LOVE the internet. I LOVE the places and people I have found here. I'm not fasting or cleansing. It's more about the way I sit (literally and figuratively) online, the way I compulsively check my phone, the way I decide on a project - like this week, rice-cooker meals - and then open 12 different tabs and spend several hours browsing through them and following links, and then never make any rice cooker meals because I never decided what leads to follow. It's a problem of scope and approach and not content or purpose.

The thought of an Internet break has been kicking around in my head for a while now. I half-joked with Aaron that for my upcoming birthday I wanted us to go for a day without using our phones or laptops. But first off, I don't need to rope him into my issue, and second, taking a day or a weekend off and re-evaluating was a little too ... big tent revival for my purpose here. I want to frame this for myself as something other than temporary deprivation followed by new resolve.

I am trying to think of this as freeing. I am giving myself a while to be free of the demands of keeping up with what's happening online. I am just going to be out of touch. I'm going to miss some great articles. I will not be the first one to tweet the link. Important things will happen for people I care about and I will not know about them right away. I guess? I'm not actually sure what will happen, because I have never, ever done this before.

I'm resisting the urge to be a pedant about my project. I'm not making rules or setting time limits. I'm not blocking sites or getting Aaron to change the wifi password. And in fact, because I do want my life to be semi-functional and do not want to be completely isolated, I'm not being a purist about it. I'll keep up on my email. I'll use data on my phone when I need it. I will probably hop on Facebook here and there to see if my old friend from middle school has had her baby yet or not. I will Skype with family and gchat with my bestie. I'm going to keep doing the Daily Frances because it is my favorite thing ever. I'm getting set up to do some volunteering for a great organization and I will obviously use the net however I need for that. It's all good. But I'm going to leave my laptop off and in a drawer instead of open at the kitchen table. I'm going to toss the phone in the bottom of my purse instead of keeping it attached to my palm. I'll sit on the floor and read a novel while the baby is playing instead of trying to keep her away from my lap(top). Or maybe I'll just sit and think.

Sooooooo throw me a bone, if something exciting happens for you, I would love to hear about it via email or text. Or if nothing exciting happens but you just want to say hi. Or if you took the best selfie and I shouldn't miss it. I care about you! Email and text me! My email is my first and last name at gmail. Email me for my phone number.

And wish me luck or self-discovery or whatever. I will now proceed to not check my blogger stats about how many people visited this post.

See you in a while.




Saturday, October 5, 2013

MPH Project - Part 3


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


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?

Monday, September 30, 2013

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.