Lessons Learned: How Saving Babies in Africa Could Improve U.S. Health Care
Saturday, Dec. 1, is World AIDS Day and the results of a 5-year HIV research study in Kenya could big global impact on all of health care – not just AIDS, but cancer and other chronic illnesses.
On average, 14,000 infants are exposed to HIV yearly in Kenya and early diagnosis is critical to the child’s survival. Medications need to be started by 12 weeks of age. Without early intervention, most babies will die within the first year of life.
The biggest barrier has been tracking and testing mother-infant pairs in a timely fashion. Brad Gautney, President of Global Health Innovations developed the HIV Infant Tracking System (HITSystem) with partners at OnTarget, a Kansas City based Digital
Marketing Agency, to link providers, laboratory technicians, and mothers and babies through a cloud-based tracking system.
Dr. Kathy Goggin (pictured left), deputy director of the Children’s Research Institute at Children’s Mercy, in collaboration with Dr. Sarah Finocchario-Kessler (pictured right), the study lead and associate professor in the Department of Family Medicine at The University of Kansas Medical Center, evaluated the HITSystem to determine if it could indeed improve outcomes. The
team from Kansas City partnered with the Kenya Medical Research Institute (KEMRI) to conduct this research. They discuss the results of their study and how the technology could be adapted and used for other health care issues that impact us all.
What prompted you to conduct the study?
Dr. Finocchario-Kessler: Maternal health and social justice have always been passions of mine and too many children were dying from exposure to HIV that didn’t need to die.
When a woman is HIV-positive and gets pregnant she needs to start antiretroviral therapy (ART) and stay on medication throughout the entire pregnancy to prevent mother-to-child HIV transmission. The mother also needs to continue anti-HIV medication after the child is delivered to prevent passing the virus through breastfeeding, which is recommended in developing countries.
The child must also be tested several times from six weeks of age through the first 18 months of life or while the mother is breastfeeding. If at any time the child tests positive for HIV, medications need to be started immediately, which can reduce mortality by 76 percent.
Kenya had a paper-based management system in place to track and test mother-infant pairs, but the system had many gaps.
Dr. Goggin: There were simply too many gaps in care that prevented life-saving treatment from being started. The quality and efficiency of early infant diagnosis (EID) services were hampered by system and structural barriers, which included long turnaround times for test results to be returned to the hospital and communicated to mothers.
For instance, a mother would be told to come back in a couple of months to receive the test results. She would take a taxi or bus and make the often multiple hour commute back to the hospital only to find the results weren’t ready yet. So she’d come back again the next month and the results still weren’t available. After a few times of traveling back-and-forth, she’d finally give up and never return.
The study was designed to rigorously evaluate the HITSystem technology, and determine if infant testing services could be improved and lives could be saved. We had pilot data showing the impact was significant, but we needed to prove that in a more robust clustered randomized controlled trial for the Ministry of Health to take it on.
How does the HITSystem work?
Dr. Goggin: Instead of a paper-based tracking system, which was the standard practice of care in Kenya, the HITSystem uses available technology and text messages to improve communication and accountability between provider, laboratories and mothers. When a mother-infant pair presents for EID care, a digital record is created. Lab results are entered online making them immediately available to providers at the hospitals instead of being couriered back-and-forth, and the mother receives an automated text message when the results are available.
When we enroll a mother, we also ask her to draw a map to her house, so if she doesn’t have a mobile phone or doesn’t respond to the text message a community healthcare worker can locate her to make sure follow-up care is continued.
Dr. Finocchario-Kessler: The system really provides an at-a-glance view of the entire cascade of care and everything that needs to happen. Did the doctor get a sample from the baby to test for HIV? Did the lab results get returned to the hospital? Did the mother get notified that the test results were in? Was lifesaving ART initiated if the test was positive? Was the baby retested at 9 and 18-months of age? Every step is checked off in the system as it happens and the doctor is alerted when a phase hasn’t been completed. Providers can also easily check a dashboard to find out which children need attention, so they can act on it.
To the best of our knowledge, this was the first cluster-randomized trial of an intervention using a combination of text messages and internet technology to target both clinical and laboratory outcomes across the complete 18-month EID cascade.
What were the results of the study?
Dr. Goggin: Six government hospitals participated in the five-year study. Three of the hospitals used the HITSystem, while the others used the standard paper-based tracking system. We found that HIV-exposed infants enrolled in the HITSystem received more efficient EID services compared to those receiving standard care. Lab results were received more than two weeks faster, mothers were notified of the results more than a week faster and HIV-positive infants started life-saving medications nearly two months earlier than those receiving standard care. In fact, 100 percent of the eligible HIV-positive infant enrolled in the HITSystem were initiated on ART.
Dr. Finocchario-Kessler: Providers and mothers who used the system tell us it greatly improved the quality of care. Mothers especially appreciated the benefit of expedited test results and receiving text messages when it was time to return with their infant for results or additional tests. Not only did it help conserve limited resources and wasted trips to the health facility, but the quicker results meant decreased anxiety as they waited to learn their child’s HIV status.
Because of the results of the study, the HITSystem is now the recommended system for Kenya and more than 124,000 mother-infant pairs have been enrolled in Kenya, Tanzania, Malawi and Nigeria.
What are other ways the HITSystem is being used in Kenya?
Dr. Finocchario-Kessler: Based on requests from providers and hospital administrators in Kenya, we’ve already adapted the HITSystem to support HIV-positive women during their pregnancies. The technology is being used to encourage pregnant women to attend all appointments, adhere to HIV medications daily and give birth in a hospital to help prevent HIV transmission to the child.
Next, we’re looking to adapt the HITSystem to support cervical cancer screenings for reproductive-aged women, given the incredibly low rates of screening and early treatment that can dramatically reduce preventable deaths from this disease.
Cervical cancer not only effects HIV-positive women, but all women in general. Where Kenya is right now in terms of being able to address the cancer epidemic is where they were 10 years ago trying to address HIV. Providers don't have the training or the physical infrastructure in place for diagnostics and treatment. We want to apply what we’ve learned and adapt the HITSystem for cervical cancer screening and treatment that allows us to really help build global health.
Dr. Goggin: Unlike the U.S., PAP smears aren’t common practice in developing areas. When a woman is diagnosed with cervical cancer it’s usually at a very advanced stage when little can be done. A lot of young girls are at risk and there’s a ton of work to be done to normalize cervical cancer screening in Kenya, but the HITSystem could be used to notify women and let them know they need to get an exam.
Dr. Finocchario-Kessler: What we also want to do is implement a system in the schools and look at all eligible students who need to receive the HPV vaccine, but haven’t yet. HPV vaccine management could also be used here in the states, which would prompt providers to reach out to patients who have yet to receive the vaccine or still need to receive the second dose.
How else could the HITSystem technology be applied to other areas of health care?
Dr. Goggin: Think about how this system could be used for vaccine adherence. Wouldn’t it be great if before a child arrived at the doctor’s office the parent received basic information about the vaccines the child will be receiving that day? If a patient doesn’t show up for the well-visit, the doctor would be alerted to follow-up and let the parent know there are important vaccines the child needs.
The technology could also be used to help monitor other chronic illness, such as cardio-vascular disease and diabetes. Eventually, data from a diabetic’s glucometer and insulin pump could be directly communicated to the doctor’s office so the patient and provider could visit remotely and immediately schedule an appointment when levels aren’t looking good. It’s this proactive care versus reactive care that will help improve patient outcomes.
We’ve learned so much through this study and the HITSystem could be transferred to a ton of stuff we’re doing in the states, especially when it comes to linking providers and patients in rural communities through technology.
Dr. Finocchario-Kessler: The system helps translate best practices and guidelines, and proactively closes that gap in what we know should happen and what actually happens. I think there’s a lot we can do with this technology and it has such transferability to other diseases and health outcomes.
Dr. Goggin: In the end, the HITSystem really holds everyone accountable, the provider, the system and the patient. I'd love to see platforms like this designed for areas of health care where we really aren't delivering on the promise of what it could and should be.
Improving health care means changing behaviors and shifting broken paradigms. Developing amazing treatments won’t have any impact on outcomes if it stays in a bottle. Its true potential will only be realized if we have a system that gets the treatment to the right person at the right time, which will take work and likely smart technological solutions like the HITSystem. It will also take clinicians, health services and other researchers all working together toward one common goal.
Read the complete study published in The Lancet HIV.
Learn more about the Children’s Research Institute at Children’s Mercy.