Why Data Matters

I've talked a lot lately on Facebook about data. Looking at data, analyzing it, using it. And for the past 2 weeks now I've got to go around and see and mentor those who produce it. While data can seem distant and unrelated, it is absolutely critical to the evaluation of programs and their impact. So I wanted to share what it means to work with data in the health sector in a developing country and all the incredibly hard-working health staff who I was able to interact with. These workers don't do anything for recognition or glory and serve in off-road facilities in far corners of the world.

I have been traveling hundreds of kilometers a day to visit some urban but mostly very rural health facilities like the one I lived at for the past 2 years. Some were at least an hour via a strong, fast truck from any sort of paved road, city, or electricity. But I went there with partners from EGPAF to give these facilities support, advice, and mentorship. During the mentorship, we reviewed all the reports, registers and other types of documentation that health facilities are required to fill out. In over 50% of facilities, the documentation is all still 100% paper based. This means flipping through pages and pages of hand written records to reconcile them with reports sent to the Ministry of Health. It can be very tiresome and tedious work but it has to be done and this is why:

This week when visiting health centres and hospitals, I went through the registers of pregnant mothers coming to the Antenatal Clinic and Maternity Ward. We wanted to make sure each woman had a chance to know their HIV status and that it was documented. This is extremely important since in order to better prevent HIV transmission from mother to child, you first must know the mother's status. We were able to provide guidance to providers on this important initiative even though many facilities are doing quite well here. We then went through all the patient cards that an HIV exposed infant receives when they are born. This is any baby that was born to a mother who is HIV positive. With proper testing and treatment they have a very high chance to be HIV negative. But with the high burden of HIV positive mothers and new infants in Malawi especially with the fertility rate being so high, babies can fall through the cracks or cascade. So this week I got to do what I felt like I came to EGPAF to do. Looking at infant's patient cards and registers, we could instantly see infants who were tested on time and those who were missed for testing or never showed back up to the clinic after birth to get tested. In Malawi, any baby born to a HIV positive mother must be tested at 6-8 weeks of birth, at 12 months, and then finally at 24 months for final status confirmation. Missing any of these steps can mean initiating treatment late which is vital for the survival of exposed infants. So my colleagues and I went through the records and found babies who fell through the process. We made lists, we assigned people to call the guardians of the babies (and many times staff use their own money to make these calls as the facility has none), and we updated all infant records to reflect the most recent information. It's something that might not have happened otherwise but now these infant's names are there on a list, actively being looked for and called back in for testing, results, and if needed, treatment.

I also got chances to teach facilities how to calculate their survival rate for HIV (basically how many patients who are taking Antiretroviral Treatment (ART) are still alive and taking that treatment after 6 months, 2 years, etc). This way, facilities can make action plans if they see they have a high number of clients leaving treatment. We can also look at how many patients who were due for a Viral Load test and actually received it. Some facilities are collecting over 100/200 VL samples a month! This can be life saving as viral load is an indicator as to whether the current drug regimen the patient is on for HIV is actually working to suppress the virus. We also look at vulnerable or high risk groups such as children under 5 years, those who were admitted to Pediatric Wards and those coming for TB and STI treatment to make sure they and their family members have the opportunity to be tested for HIV and initiated on treatment if found positive. We also make sure that once someone receives a HIV test, they are properly referred and counseled based on their results and a risk assessment.

So my job is to show facilities and encourage facilities on how to use and critically analyze their own data that they already work so hard to produce. They can even graph the results as shown above and below. Data shows us just how we are doing in an area related to HIV and without it, we would be lost with no road-map or way to judge how we are doing. Even a rural facility hours from electricity and paved roads can use data, analyze data, and literally use it to save lives. In Malawi, saving lives is not an abstract idea but something that can actually be measured. Health care workers can literally see the lives they are saving as they give that baby the test he or she needs and the correct treatment following the result. They can see the life saved when they counsel someone coming in for STI treatment to take a HIV test and then start and stay on treatment. This is ultimately what data is all about. It's about providing the highest quality service to clients so they have the greatest chance to survive and thrive. It doesn't have to come with shiny bells and whistles (computers and electricity) but can be done on dusty roads and crowded facilities with the passion and commitment of health care providers and supporters.

To conclude, I want to thank all the healthcare providers who I met with and will continue to meet. They are the heroes living in difficult situations everyday overburdened with hundreds of patients and yet still taking time to receive feedback with humility and grace. I hope this blog can make their significant impact known in some small way. I am so proud of all the steps I saw taken this past week and a half to use data to impact lives. We can and are stopping the spread of HIV and giving back hope. 

[Thanks to: Michael Phiri, Agatha, George, Agness, Symon, Chipiliro, Monica, Lasiya, Junior, George, Gradson, Matembo, Bertha, Doris, Matinam, Likani, Allan, Esther, Erisha, Dorothy, Precious, James, Peter, Lonex and many more]