I am unfortunately very practiced in the rules of HIPPA/IRB in America. My Presidential Scholar project was delayed almost a year because of HIPPA approval, and SPAHRC (too embarrassed to tell you what it means…) never got to play with our own data because HIPPA rules just would never let us access any.
It’s just not quite the same in Rwanda.
Fortunately, this means that we were able to conduct a community and outpatient survey with absolutely no hurdles. Unfortunately, my understanding of the purpose of HIPPA, coupled with my respect for rigorous economic studies…meant that I couldn’t fully appreciate/accept how we were able to conduct such a survey so quickly, without any prior approval. Ultimately though, it’s pretty damn sweet Kelly was able to design, conduct, and analyze a community-wide survey in her 6 weeks in Rwanda.
I’ve since taken over the analysis and reporting of this survey. I could tell you all about our results and ensuing recommendations, but that would be boring. Plus, my partner didn’t quite adhere to the 10 page page-limit that I set for him, so yeah…you wouldn’t read it. (But I will point out that statistical significance also does not matter in Rwanda because there’s absolutely no data on anything, so any data is automatically considered significant.) Instead, let’s focus on the entertainment of the lack of HIPPA:
Despite our informal “consent” at the beginning of each survey that explained to the respondents that their answers would not affect the care or quality of care that they received, all answered that they are “very satisfied” with their care and had “no complaints” and “no suggestions” etc. (Definitely not the responses you would expect to get in the US…)
Except for one gentleman, who was quite honest in his responses. Apparently, he has some disease that the health center cannot treat, yet due to the strictly regimented Rwandan health care system, he must always first go to the health center and wait to be referred to the hospital every time his disease acts up. He was incredibly frustrated that the people at the health center could not just treat his disease. (Wishing I remembered what it was.) This, Kelly and I recognized, represented a failure of the current, bureaucratic system.
We didn’t get 2 sentences into our analysis before Dr. Nathalie (the 25 year old doctor on our staff who works one day a week at the hospital) cut us off: “That silly old fool! He said that!?! He has a card that states he can come directly to the hospital to receive care, yet he continues to go to the health center EVERY TIME. Silly fool, silly fool, he just wants to be cared for at the health center but refuses to recognize that they cannot treat him. Ugh, I’m going to have the nurses explain this to him the next time he comes in.”
And there you’ve got it…it may be incredibly cumbersome, but I think there may be a rationale to following the rules of HIPPA.