Democratizing Healthcare Information for the African User

My daughter had run a 39.5 C fever for 4 days straight. Tonight she seemed to be declining. Until now I had felt I could manage her ‘likely’ viral illness on my own. I started questioning myself as I often do late into one of my children’s illnesses… “Was I allowing my training as a pediatrician to override my natural, parental instincts?”

A parent who was not a physician would surely have taken her child to be seen by a healthcare professional by now…I told myself.  I knew I should probably take her to an emergency room.  But I didn’t know where to go.  I just didn’t want to take her to the nearby emergency department as my experience with them had highlighted they were much more versed in adult care than pediatric care. I went online trying to find a hospital that displayed its pediatric urgent care focus, but my search was futile. I knew if I went to that one hospital near me, I would be give an unnecessary cocktail of steroids, antibiotics and cough suppressant.  So I did what so many of us do…I reached out to my physician friends on WhatsApp, and we went back and forth on the differential diagnosis. By the time we were done, we had convinced ourselves I should take her to that nearby emergency department.

How do people who need healthcare make decisions? And how does that differ, if at all, by virtue of where you live, your education, socioeconomic status and gender or by what information is actually made accessible to you?  We have been speaking to health consumers in Nigeria recently to better understand how they made healthcare decisions and our early results are showing us that a lot of these decisions are made based on sheer proximity of location. We are learning that cost carries significant weight as a primary driver and as such people take an almost tortuous path to avoid significant hospital spend. The primary way that people make healthcare decisions is by asking their friends/family and word of mouth. Sometimes we intellectualize these decisions, but when it comes down to it, the way I made the decision that night was by asking friends and word of mouth; and my guess is that many of your own healthcare decisions are by word of mouth.

There are countless familiar tales of people struggling with these issues: from trying to navigate the traffic of Lagos to take a family member for an emergency CT scan only to find out that the machine is not working- to the utter confusion of parents in Zambia about where exactly to take their 2 year old for screening for a suspected developmental delay.

Technology enables one to expand the community through crowdsourcing and real-time understanding of facility/equipment availability, quality and more. During the peak of the Ebola pandemic, my partner and I spent many a night trying to find as much as we could about what was happening in Guinea, Liberia and Sierra Leone. It quickly became obvious that very little information was accessible at the fingertips of the citizen. Once again, health information asymmetry was an exacerbating variable in a struggling health system. We kept reading about overflowing facilities and sick people being sent away because no beds were available…and so we asked ourselves what would it take to identify all the Ebola Treatment facilities available and layer, through crowdsourcing, real-time bed availability so that those who had access to mobile phones might be able to add this as another source of information.  By that weekend, an impromptu team of colleagues had mined the data from the internet and started building a GIS-layered platform to highlight real-time bed availability.  The notion that we need to empower citizens with healthcare information resonated with people, and our idea was selected as one of OPENIDEO’s winning ideas in the Ebola Grand Challenges.

How do we democratize healthcare information so that the healthcare consumer is truly empowered? It clearly requires an integrated, systems-level set of solutions but as a start, we asked ourselves: what would it take to harness technology to make basic information about healthcare facilities and services, opening and closing hours and location availability on a widely accessible platform, to residents across sub-Saharan Africa? Certainly in a few countries, such as South Africa and Kenya, there are databases, some more accessible than others. However, in the majority of sub-Saharan African countries, this information isn’t available and when it is, it is often inaccurate or lacking critical information to empower the consumer. What if a market vendor in the village suffering from diabetes could use her phone to figure out that there was a diabetes specialist an hour’s car or bus ride away? Would that change the way she sought healthcare and managed her disease? What if a father, overwhelmed and demoralized by the lack of answers to the questions he is asking at the primary healthcare clinic about his 3 year old son who has never uttered a word, could use his phone to determine where to go to find a professional versed in developmental delays? How would that impact the child, his future and his entire family?

We’ve set out to create a simple, free and searchable, open access GIS-enabled app and web-based portal that leverages the input of healthcare providers, patients/healthcare consumers, regulatory agencies, professional associations and civil society to provide access to transparent information about the geographic location and availability of registered and licensed healthcare facilities, specialty providers, pharmacies or laboratories that will provide credible, up to date, quality services to consumers and patients.

Government regulatory agencies, healthcare providers and patients alike are generally unified in their desire for quality healthcare provision. We are building a quality controlled crowdsourcing mechanism which will, for instance, allow providers to easily share details regarding the specific services they provide and their hours of services; on the consumer end, individuals can also share or post when a new facility has popped up near them.

This is a fully collaborative effort and we hope you join us in contributing to the development and implementation of this platform so that we can also make it accessible to those with feature phones and beyond. Our vision is to layer additional information on this such as HIV testing availability, Kangaroo mother care, The mDoc Navi Health app is currently available in Android on the Play Store so please join our Beta user group.

It is our hope that the next time a parent needs to make a decision for her child, a young adult wants to discreetly locate a facility that provides STD testing, or a niece tries to help her uncle navigate his post-stroke care, they can look to the Navi Health app as an additional source of information to help them make their decisions.

As for me, I ultimately did take my daughter to the nearby emergency department, received the expected prescription with 5 different drugs which I knew, by virtue of my pediatric training, would likely cause more harm than good. I added this prescription to my unfilled prescription pile and subsequently nursed her back to health myself, wondering why I had gone in the first place. If I’d had the information I’d been searching for in the first place, how would my decision have impacted our lives? Would I have relied less upon my medical background and trusted my parental instincts and “the system” more?  If so, perhaps my decision would have had the additional benefit of reducing the burden on that nearby emergency department and availed already limited resources to those who needed emergent care so much more than we did that night…