Asante sana is the Swahili word for thank you very much. That is what this post is going to be- literally just me expressing gratitude and awe for all the people who make shit happen in Kisumu. Finally a happy post! I know right?
Community Health Volunteers
A Community Health Volunteer (CHV) is just that- a volunteer from within a community. The term Community Health Volunteer (CHV) is pretty much interchangeable with the term Community Health Worker (CHW), but I prefer the former because it emphasizes that this is Not. Their. Job. They have actual shit to do to every day to make a living and support their families. This is extra work for them. There might be incentives provided to do the work, but that’s beside the point.
Think about all the “volunteering” you’ve done in your life, pat yourself on the back, and then check your ego for a hot sec. If you are a millenial in America, I’m gonna guess that most of your philanthropic work was: A. to put on a resume for college/internships/scholarships/etc., B. as a part of a group activity or C. penance. For those of you who did it purely for the betterment of the world, then good on you! I know a few of you people and you kick major ass. I look at myself and I can say, without feeling braggy, that I’ve done a fair amount of philanthropic shit in my life. And while I did very much believe in the cause for each of my activities (public health, pediatric HIV, science education), they were also fun (um hello UCLA Dance Marathon anybody?). Even if they sometimes hit a little close to home, nothing was life or death. CHVs, on the other hand, are the literal link between their own neighbors and access to care and treatment. Often times, they are also the only thing keeping a study going because of this positioning.
First and foremost, they provide rapport for participants. Even in America there is often awkward tension between patients and doctors. Being a patient is a vulnerable position. As amazing as your health care provider might be, he or she is still a stranger. A stranger that is not only witnessing you at your most vulnerable, but is also responsible for your well being. It’s a total power differential. Layer that dynamic into the relationship between scientist and study participant, add in lack of trust towards authority figures, a little bit of illiteracy, a lot of superstition and a whole mess of medical stigma. That’s what scientists and study participants have to deal with in Kenya. The CHVs span this gap giving the participants a level of comfort and familiarity. There is trust between community members. Study participants are more likely to believe what a CHV tells them about a medicine or a procedure or a study. They are also more likely to provide honest information they to a CHV than they are to a nurse or scientist. In fact they are more likely to provide information at all to a CHV.
Second, CHVs provide a reliable line of communication between study participants and doctors. My study coordinator said that he recently called to check in on a participant who was late for an appointment- we will call him Bob. So he calls the number Bob had given him and asks for Bob. The person on the other end, not only isn’t Bob, but has no idea where Bob is. The dude with the cellphone was in Nairobi for the weekend and wouldn’t be able to check in on Bob until he got back to the village. This is normal. When you or I have a doctors appointment, we get email reminders, text reminders, voicemail reminders. We can reschedule at the last minute and even warn someone when we are running late. In Kenya, most people don’t have access to internet on the reg, let alone an email address. While cell phones are a little bit more common they are often shared amongst family members in Kisumu, and amongst entire communities in more rural areas. Cell phones get passed around, taken on trips, die for days at a time and are just generally unreliable. In these instances CHVs can intervene and open up those lines of communication. Since they are a part of the community, they know people like Bob and can physically go check on Bob to see what his deal is. If Bob just forgot they can promptly bring him to his appointment, and then bring him home, thus saving the day for science!
Which brings me to my last point. CHVs know all the dirt and do all the dirty work. CHVs are the boots on the ground. They zip around the country on motorcycles carrying people and supplies between villages, hospitals, remote health centers, schools, churches, you name it. There is a whole fleet of motorbikes at the CRC just for the CHVs to get around. And of course, because they are boots on the ground, they know people. They are influencers within their community and valuable sources of information to doctors. They are the Gretchen Weiners of scientific studies- which as you will see in an upcoming post is more valuable than you can possibly imagine.
So asante sane to the CHVs in Siaya County! Without you, our studies would crumble into nothingness.
Let me just start by saying that nurses in general do not get nearly enough street cred.
Okay now on to the study nurses! Ugh, so much respect! Let’s start here… Because of the high incidence of TB and the existence of KEMRI, there are consistently a number of studies enrolling participants in Kisumu. Every single one of these studies officially enrolls at the CRC following an initial screening conducted by, you guessed it, the study nurses. To maximize the information that can be obtained from an individual participant and to increase an individual participant’s access to resources (treatment, counseling, incentives etc.), individuals can co-enroll in as many studies as they qualify for. Because of this co-enrollment process it is easier to have each nurse do all the screening tests for a given participant and then determine what they are eligible for. This differs from how we screen participants in the states where each study has a set of nurses and you must see a specific study’s nurses for screening and follow up. The CRC nurses therefore have to be trained on the study details, protocols, and screening requirements for allllll the studies. That’s a lot to juggle for any nurse, but the nurses at the CRC have gone above and beyond even that level.
When I was going through my mock study enrollment, the senior nurse on staff- Zipporah- went through all these nitty gritty details with me. Each nurse is responsible for a big plastic box that contains the tools of her trade. Some of these tools would be familiar to anyone- gloves, thermometers, hand sanitizer. Others are familiar to me as an infectious disease scientist- rapid HIV tests, hemoglobin tests, pregnancy tests, rapid malaria tests. Interestingly though, some of the most critical items in these boxes are not scientific instruments at all. Their existence perplexed me until Zipporah explained them to me.
A stamp pad is used to obtain consent from individuals who are illiterate. A fingerprint acts as a surrogate for their signature on paperwork, indicating that they have been informed of the all the risks, benefits, and protocols of the study.
Different size jugs are strung from the roof of the tent. They are used to demonstrate the volume of blood in the body in comparison to the volume of blood drawn for: 1. a donation 2. the actual study visits and 3. this initial screening. Obviously most of us are not intimately familiar with these volumes but when we go see a nurse, we trust that they are not taking dangerous levels of our blood. Most of us probably also know that blood is replenished continuously. This level of trust and physiological awareness is not a given in Kenya. There are still a lot of superstitions and fears surrounding medical care. The nurses therefore use these physical indicators to show the safety of the process.
Brown paper bags are used to discreetly carry stool and urine samples back from the bathroom. I could write a whole blurb about poo culture in American medicine and mainstream society, but I won’t. The important part for this discussion is privacy. When you go to a doctor in the states, you end up behind closed doors, far away from the waiting room, the nursing staff, and any prying eyes. So if you have to give a urine or poo sample, other patients don’t see you. Even if you skipped through the hallway with your poo in a tub, you’d probably still only be seen by a nurse or two. The enrollment process for TB studies in Kenya, on the other hand, is all out in the open. The paper bag therefore provides the participants with a level of discretion and privacy. It goes a long way towards helping participants feel comfortable and dignified.
These are just a few of the little things we take for granted in what *should be* a very standard process. Thankfully though, the CRC team is sensitive to their participant population. They understand how to best convey information and assuage fears, and they do this with patience and empathy. This is SO important because these nurses are the first medical face that patients see. As such, this interaction can determine whether a patient becomes a participant at all.
So asante sana to the study nurses for their dedication, patience, warmth and creativity.
You know how we marvel at how our parents ever did anything before the internet and laptops and shit? Well life is still like that in Kenya so I now know, first hand, how they did things. In Atlanta when I want enrollment information on a participant, I just ask Cheryl to log onto the magical database and download excel docs for me. I super take for granted the amount of work and manpower that goes into creating that magical database.
Basically, each participant in our study has a binder associated with them. Each binder has a fat stack of inserts, each of which documents one small part of their total enrollment data. Those sheets have to be filled out by hand before they can be input into the database. The kicker is that each of those sheets is filled out by a different person and each of those people are located in different labs at different sites. Soooo one sheet might be the TB microbiology data- colony counts and antibiotic resistance test results- which is collected in the TB lab and may take weeks. One sheet is the HIV lab data- viral loads, CD4 counts- which goes to the HIV lab and I have no idea how long that takes. Another may be the HIV patient data- Is this patient on antiretroviral therapy? If so, when did the start? If not, when will they start? What regimen? Another sheet still is the helminth data which goes to the helminth guy in the TB lab and takes a day but has to be done on two separate occasions. You get where I’m going with this, right?
Then all these separate physical pieces of paper have to somehow make it back to the CRC before the information gets put into the fancy online system. It got so chaotic that the document runners now have to physically sign out every piece of paper every time it leaves one location and sign each piece back in to every new location. This sort of solved the lost paperwork problem but has also added even more paperwork that has to be collected and put into the fancy online database. And of course the internet is regularly on the fritz so there’s that.
After it’s all put into the magical database, someone has to go through each binder and compare the physical documentation to the online information. This is called Source Document Verification (SDV) and is a part of Quality Control (QC). It sounds silly, but when you are on the ground, you realize that some information is being conveyed in phone calls/text messages/emails out of haste. So sometimes we have the information in some unofficial way, and it may even be correct (though not always), but the actual legit documentation is missing. This is a big no no. You need the physical document or it doesn’t count. You also need to match the physical document or it doesn’t count. And sometimes the documents aren’t even complete! People get sloppy and lazy and busy and a million other things. So when information is missing the QC person has to go back and be like “yo lab teams wtf?” It’s kind of a nightmare. This amazing chick Emily from Emory was at the CRC while I was in Kisumu. She spends like half the year in Kisumu doing these tasks and, dear lord, is it time consuming! Way more than you would think! But it’s SO important when you get to the data analysis step.
Right now I’m staring at a data table in R of enrollment data and there are a ton of missing values. Some of them are normal, but some of them I’m totally itching for. Like I knowwwww that that one cell should have a value in it! But I can rest easy knowing that people like Emily are on it. If that cell should indeed have a value in it, she will either find that value or find out why that value doesn’t exist. And she will do it by sifting through hundreds of participant binders and comparing them to the online database. Yuck.
So thank you to the data management team, and pretty much anyone anywhere who has ever had to do SDV or QC for a study. You bold souls, you!
My study coordinator is this guy named Felix and he is one suave dude. He is warm and personable with this deep, booming voice and easy sense of humor. I went out with him and “the boys” during my stay and he spent the whole night talking up his boys and making jokes about Kisumu and Kenya. He is easy to be around because of his humility and self assurance, which shouldn’t be able to coexist in a human, but somehow do. I tried to teach him how to salsa dance (I can’t salsa dance) and he was absolutely atrocious at it, but it didn’t get him down in the slightest. He knew he was bad but was still so freaking charming about it. You can tell from talking to him how much he loves his family, and his country. And I can tell from watching him interact with people that everyone adores him- both staff and patients. Thank fucking god, because his job is literally to coordinate humans and convince them to do things for him (and by proxy, for the study). He is excellent at his job because of the kind of human he is. That part is easy to tell. The harder part to notice was just how seriously he takes this job, and how taxing the job itself is. He just wears the responsibility so easily.
The afore-mentioned Emily referred to him as The Magician because according to her “he’s always disappearing.” At first I was annoyed by that. Homie has a job, what do you mean he’s always disappearing during the workday? Then I realized that she meant it affectionately, almost as a term of respect. Felix just has so many humans and tasks to juggle that he is constantly being pulled one way or another. If he “disappears” it really just means that another task took him away from you and since people aren’t as readily accessible in Kenya as they are in the states, you just accept it. I remember one day in particular that exemplifies this. So my car picks me up in the morning at 8:30 am (it already picked up Emily), which has, of course, been arranged by Felix. We then proceeded to drop Emily off and pick Felix up at the CRC around 8:45. He had already put in a full morning’s work. Then he had us pick up another coordinator at another hospital on the way to KEMRI, drop me off at KEMRI and then take him and the other coordinators to a field site to oversee activities there for the day. Then when I was picked up at the end of the day at KEMRI, he was magically there again coordinating sample transfer. Did I mention he is also attending night school to get a nursing degree? Like Emily said, The Magician. And he doesn’t even bat an eye.
So asante sana Felix, and to all other coordinators just as magical as he is. Without your suave multitasking fortitude, life would be utter chaos.