Tuesday, October 14, 2014

Research in the Morning, Research in the Evening, Research at Supper Time!

By Orrin Tiberi

Hello again!  Once again this is your M&E specialist writing to you from the lovely Iganga, Uganda!  Rainy season has officially started with a bang, or an appropriate boom of thunder, and I think it is a great improvement on the relentless sun that usually beats down on the UVP compound.  The afternoon storms do seem to kick off the power for all of Iganga north of the main street, but a few hours spent in pitch-black reflection are not bad.  I have gotten use to the sun setting and rising at the same time, and am still enjoying exploring the red dirt roads that branch out in every direction from the town center.  All of this comes at an important time for both Julius and myself - we have officially been Global Health Corps fellows for 3 months, or ¼ of the total time we will be here.  Scary but exciting!

As you may have guessed, we have been concentrating for the past month on getting a research proposal up, running, and submitted.  We finally were able to send in the documents, all 8 of them, to The AIDS Support Organization’s Internal Review Committee, or the TASO IRC.  IRC approval is needed for our research project, which hopefully will be starting early January, as we will be working with human subjects and also looking to publish.   The research project, entitled The Evaluation of the Impact of Uganda Village Project in the Iganga District, is an approximately 100-question survey that will be conducted in the graduated, current, and future Healthy Villages.  We hope to be able to compare villages that have received the Healthy Villages program with those that have not to compare health outcomes. Lets back up to IRC approval and see why this is necessary for UVP.

Circa 1932 there was a researcher than wanted to know the effects of syphilis on the human body.  At the time penicillin has not been approved for human use, so there was no cure for most of the bacterial infections, like syphilis, we are able to treat so effectively today.  The research team was based in Tuskegee, Alabama, and they were able to find a rural population nearby that already had high levels of syphilis and were willing to participate in the study for the monetary and perceived health benefits.  Though not 100% ethical (they never told the participants that they had syphilis), there was definitely a need at the time to understand the course of the disease on the human body.  In the 1940s, however, when penicillin was validated for curing syphilis the ethical position of the research team became clear.  The study team decided to withhold the treatment to finish up their research project for an undetermined amount of time.  The study continued for thirty more years, until in 1972 when the story became a huge scandal for the blatant disregard for human suffering.  The idea of IRC, or IRB, approval was born from this episode, now known as the Tuskegee Syphilis Experiment.

Today, in order to conduct any kind of research with human subjects the research team needs to be able to provide evidence that they will not be harming the participants in any way.  Beyond the physical harm of potential participants, IRB also mandates that the research team proves that they will not be collecting any data that could potential be harmful to the participants, or de-identifying the data sufficiently that it cannot be traced to the original participant.  This clause is extremely relevant to Uganda Village Project as many of the questions on our survey ask about health status and sexual history.  In our IRC proposal, we had to explain the process of protecting participants from any information leakage that could result in their detriment.  For example, one question is about sexual activity.  If an unmarried 18 year old responds positively and the mother comes across the study, there could be problems.  Another question asks about current health problems such as HIV or cancer.  A family finding out a relative is HIV positive through a survey is not appropriate and could put that family member in real danger from their families’ reaction.  UVP’s solution to these issues is to destroy the location information directly after the survey is validate and check for completeness.  We will also be storing the paper copies in a secure location on the compound.

The main objective of the research project, as you may have guessed, is to evaluate the effectiveness of the Healthy Villages program and looks for bright spots in the Healthy Villages. Bright spots are villages or people that have excelled in any section of the program, and appropriately are the areas that we will be concentrating on in our focus groups to see the driver of such positive change. Hopefully we will find some that can be replicated in other villages with not as good performance. Besides evaluation, the Uganda Village Project also hopes to be able to publish academic manuscripts from the research project.  This is another of the IRC oversights and we will be working directly with the board as we write publications.  As I said in my last post, it is going to be a busy, and exciting, year!

Orrin is one of Uganda Village Project's Global Health Corps Fellows this year. You can find him on Twitter @otiber or on Instagram @ofteted. Any questions or comments you may have can be directed to his email orrin@ugandavillageproject.org.

No comments: