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!