Why patients should own their health records

Think about the last time someone asked you a question about your health and medical history. Could you answer it? Honestly? Perhaps it was a nurse asking which medication you started this year, or a pharmacy locum needing to know when you were last vaccinated. Most of us fumble through these questions, even though we care about our health, because we were never really given the tools to hold onto that information ourselves.

But what if you had all that information at your fingertips, on an app on your phone? When we put these questions directly to hundreds of South Africans, the same idea kept surfacing without anyone prompting it: all about your health, your data, and your control. One person put it more plainly still: take full control of your health information, and keep it completely private, so you can decide who sees it. Nobody had to explain the concept of health ownership to all these people. They had already felt its absence, and they were tired of it.

Now consider what that gap looks like within a family, where ownership extends beyond individuals. Most of us end up taking on medical responsibility for others in our lives. A parent keeps a child's birth records and immunisation history from their very first days, and the information a school will ask for again and again over the next eighteen years. An adult carries their own prescriptions and wellness records through decades, often alongside a chronic condition managed by several doctors. And many of us eventually become the person responsible for an elderly parent, maintaining the emergency information and caregiver access that keeps their care coordinated. One record that follows a person from birth through old age, held within a single account that a family can manage together, mirrors how families already manage healthcare, just without a proper place to do it.

That is why we decided to develop something to help.

The encouraging part is that people are already closer to being ready for this than most assume. In the same research, seven in ten patients told us they use multiple general apps every day, and just as many described themselves as very confident doing so. Only half said the same about health apps specifically. That gap points toward motivation as the real driver. People already have a daily habit. What has been missing is a good enough reason to bring that habit into their healthcare. When we showed the same patients a concept centred on one secure place for their health information, the appeal scores ranged from 86 to 89 out of 100 across every benefit we tested, a level of enthusiasm we were not expecting to see so consistently. Older patients and those less confident with technology told us much the same thing in different words: this will only work if it is simple enough to use with minimal assistance.

Being able to speak about your medical situation provides independence. But what if, in an emergency, you cannot? It could happen after an accident or sudden illness, leaving you unable to communicate with a stranger in scrubs. At such times, the version of your medical information stored on paper becomes the only source others can rely on. If that information is missing or outdated, you effectively become invisible to those who need to help you. When we asked patients what would make them trust a health app enough to depend on it, the consistent answer was: feeling understood, even when they cannot explain themselves.

However, being unable to speak for yourself is one part of what ownership protects. The rest plays out over decades, across an entire family, long before or after any single emergency.

This is why NgamiMyself exists. We built an emergency view into the record itself: the medications a person takes, their serious allergies, the conditions a paramedic needs to know in the first sixty seconds, and the person who should be called if things go wrong, all visible immediately, without a password or a pin code standing in the way. When you cannot speak for yourself, your record can speak for you. The idea came from the people in our research, one interview at a time, long before we wrote a single line of code. Ownership was always the obvious answer. And now we have built somewhere for it to live.