(TL;DR: an update on my life that segues into a complaint about international development)
If you're wondering where my posts and I have been, that is reasonable. The short answer is: it's complicated. Without getting too much into other people's business, I can say that my mother is enrolled in a clinical trial at the NIH, and I've been here for the last week, reading aloud and watching TLC and locating bakeries that sell the widest variety of cupcakes. (Side note: After some comparison testing, we recommend Jennycakes.) She's probably going to be fine, but she's not exactly enjoying herself (cupcakes aside), and I'm going home in a couple of days to hang and help out for a week or two. For this and a variety of other reasons, I'm freelancing right now, so I'll be working from home and then coming back to DC.
As a result of recent events, I've gotten to know the NIH Clinical Center very well, from the parking guys to the location of the linen closets. Something that's not surprising, but is worth noting, is the quality of care we've all observed. Everyone is incredibly nice; people who don't know information will go out of their way to find it for you; the food (mediocre at best, but that's inevitable) is presented to patients on a menu and referred to as "room service"; the children's ward is painted purple and features brightly colored lights and art; everything is immaculate. This is obviously the quality of care one would hope for from the government's flagship hospital, but even my father, the doctor, has repeatedly commented on how hard everyone here works to make patients not just get better, but also feel better.
Let's compare that experience to the one described in this NPR story about HIV treatment in South Africa. It's about how one particular clinic is trying to innovate in its outreach practices to known disease carriers.
Brenda says that it's hard for most of "the ladies" to go to public health clinics. The people there look down on prostitutes because of the way they earn a living and because many of them are not from South Africa.
That's a problem the University of the Witwatersrand is trying to solve. It runs a clinic on the second floor of a public health facility just a few blocks from where Brenda and the other women work at night.
Brenda says she recently went there for help with a sexually transmitted infection. "They gave me good treatment, and I was fine," she says. "I really appreciate that."
She says the staff at the clinic understands her.
To recap: South African sex workers are more likely to have HIV, and they are more likely to seek treatment (and inhibit the spread of disease) if healthcare providers are nice to them. NICE TO THEM. In its most basic form, this is a lesson that most of us learn around the age of five. And yet: it is so novel, so innovative in the field of public health and development, that it gets featured as though it is something special. I think we can all be forgiven for asking what is going on here.
I bring up this particular example to say that I don't know what it's going to take for the development world to acknowledge the fact that experience matters. I feel like I'm beating on the same old drum by saying this, being reductive and overly simplistic, but it's still not happening, so I guess none of us are drumming loud enough. This idea, that the reactions and signs and perceptions a person has will impact the way that person behaves, is not new. When I was working in the private sector, the customer experience was one of the first factors we considered in creating a marketing campaign: How will this look to the customer? Is the language challenging, welcoming, direct? If we choose one particular channel to distribute our message, are there connotations associated with that channel that affect customer receptiveness to our message? (You know. There's a reason textbooks aren't printed on pillows.)
And nowhere have I seen this principle demonstrated more clearly than at the NIH. I mean, there's no reason to front; people suffer here, and they die, and no one is pretending otherwise. But resilience is emotional as well as physical, and it's particularly crucial when patients (or beneficiaries, or customers, or stakeholders) are going through something that is so stressful and so difficult and so straight-up miserable. The soft slippers, the frequent and direct doctor updates, the nurse who mixes your juice into a cocktail when you've had nothing but ice and painkillers for two days: each of these is a tiny push, but a push nonetheless, away from the idea of just giving up.
Think about getting tested and treated for HIV. That's one of the most stressful medical experiences possible. Couldn't it use a similar approach? Seriously?
I can imagine the responses that practitioners might have to this rant: we do try to focus on the users; our resources are constrained; funders are restrictive; there's so much more to a quality initiative; etc. To which I say: 1) until this idea is not perceived as innovative, I want us to keep working on documenting this, to integrating it into our development proposals and M&E plans; 2) that's true to a certain extent, but neither hospitality nor customer service are restricted to the Global North, and a lot of these issues can be addressed through better and more user-centered program design; 3) spin this as innovative, because apparently everyone else is; 4) correct, but this is still important, and it's being ignored. (I am citing one example here for rhetorical purposes, but if you would like to learn about other development initiatives that have failed because they offered a poor user experience, I can certainly provide other cases. So, for that matter, can anyone who has ever worked in the field.)
I just...I don't know. I'm so thankful for the care we've received at this wonderful institution, and I wish that everyone could experience it, that seeking healthcare could be an engaging and challenging and dynamic process rather than just one that sucks a lot. It would save the human community a lot of time and effort and heartache.