A patient's journey through the South African health sector

"This work is not for yourselves - kill that spirit of self, and do not live above your people but live with them. If you can rise, bring someone with you" - Charlotte Maxeke

I've been following medical technology for some time. I live thousands of miles away in South Africa, but thanks to the internet, for over a decade, I've witnessed the digital health revolution and my creative mind is captured by the unimaginable potential it has to redefine the medical challenges in my country.

In 2004, I had a car accident and I suffered massive damage to my abdomen, pelvis and spine. I also had multiple fractures in my face, deep lacerations and I lost my eye. I don't remember the night of the accident to be honest; according to the reports, I hit my head so hard it caused amnesia or perhaps my subconscious blocked out the memory of the pain. I was told that I was resuscitated on the side of the road by a group of incredible paramedics from Netcare 911. This was a list of my injuries.

My first memory after my accident was waking up two days later in one of our academic hospitals called Charlotte Maxeke in Johannesburg. I found myself staring at a white ceiling wondering why I was unable to move my body, on a ventilating machine, fighting to focus past the intense rush of cold blood under my skin from excessive doses of morphine so that I could understand what had happened to me.

In South Africa, our health system has a clearly defined line between the public and private sector. There are multiple and complex reasons for this - political and funding issues for the most part as far as the public know. One of the apparent obstacles for me as a patient was health IT. Because of this, I found myself faced with the most extraordinary puzzle which I had to piece together and with no idea where to begin. My mission became understanding the medical terminology and my injuries, so that I could make good decisions. A shortage of doctors' websites and information pertinent to my recovery was nowhere to be found.

My paperwork began accumulating because I had to be compensated for my injuries and find treatment. I was a road accident case and this required medical-legal reports. I also needed my own independent specialists to record their findings in reports so that I could pass it on to the next tissue-specific specialist. For example, a maxillofacial surgeon would specialise in bone and do the relative surgery; he had certain findings on examination and I would have to take his report to a plastic surgeon who was skin-specific so that we avoided surgical errors. The hard part for most patients is being the "uneducated middle-man" trying to understand what the last doctor said.

Over the first six years of legal and medical findings, I built up an impressive 600-page file of medical reports. The pelvic injury had a possibility of a hip replacement and the head injury had memory and mood disorder concerns. I was 25 years old. I had my life ahead of me, but I learnt how to model my life around my injuries.

The first thing I did after my recovery was to search for surgeons performing eye transplants. I refused to accept that with all of our technology we couldn't implant eyes. So I searched online. I came across "Dolly the Cloned Sheep" and read about how genetic cloning technology had been banned because of human ethics. It was ironic that I visited New York several years later and saw her in a window display of a restaurant called "Katz". One particular area of this scientific research was called therapeutic cloning. Scientists were arguing about its value for human organ replication. I have ethical views about this, but my heart sank into my stomach when I thought about how many lives this could save and how I could have a new eye. I followed technology from that day.

During my eighth year of failed surgery and rejected prosthetics due to MRSA, I compiled my medical reports into a four-page document and emailed it to the best surgeons in the world, asking them for help. One day I got a reply and over a Skype consultation with a physician who dealt with my injury often, my treatment finally became clear to me. It enabled me to find local doctors echoing the opinion. Within eight months, the surgery was finally successful.

In a complex case like mine which required a multi-disciplinary approach, communication between specialists is vital. One of the most talked about digital technologies is Electronic Health Records (EHR). One aspect I haven't seen enough focus on is the format of how physicians upload their reports. I've seen some articles about scanning documents with a mobile application and then using Optical Character Recognition (OCR). With a case like mine, the question is how do we enable physicians to communicate easily using technology, to build a case and involve the patient in that process?

How can we optimise the way we capture medical reports on EHR so that it can present an automated overview of relevant criteria to that specialist? Taking it a step further, how can government compensation funding be managed more efficiently with this kind of medical report management system and what other sectors rely on them too? Education is a sector which intersects health in many ways. Medical reports are important for school placement of special needs children.

It will be interesting to see how a smart health system in 2020 will be tackling all of these issues. One thing I am certain of, the patient's experience is equal to customer experience; it should never to be overlooked in the redesign of effective digital systems.



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