Ever since the emergence of Covid-19, health issues have been given a lot of attention on the international level. Countries are very much careful and mindful of the people who come in and out of the country. And for these countries to have a proper system to ensure proper healthcare delivery, there is one thing they really focus on, that is data.
Regardless of what industry one finds themselves in, data plays a key role in how services are delivered and products are produced. Data can be taken manually or electronically for many purposes. But In this article I am going to pique your interest for how data must be treated in our healthcare system.
Recently I was a participant in a workshop for media personnel on Health Data Governance. For a very long time I took for granted who kept my data and what was done with it. I know most aren’t really bothered about how data sharing can make a difference. But let me share with you a life-changing experience I had recently.
In the last quarter of 2022, my father had a respiratory system attack which looked deadly. For a few days we were not sure what it was but we had got him some drugs to stabilise the attack. My family and I did not know it was TB until a later diagnosis showed he had it.
He was admitted at the Maamobi Hospital and some tests were run on him and it came out positive that he had TB. He is still on his medication though.
Something dangerous happened when he was admitted to the hospital. My father’s folder was exchanged with another patient’s folder at the ward. What was more worrying was that the doctor attending to my father had written in my father’s folder some injections he should be given and also place him on oxygen.
Shortly after the doctor made those prescriptions, he followed up and realised that the nurses ended up giving the injections to another patient and placed that other patient on oxygen when he did not need it.
I can only be thankful that my father survived that period before he was transferred to the Korle Bu Teaching Hospital for further treatment. It is sad to say that the man who took my father’s prescription lost his life.
This is one in a many examples of how when data is not properly kept and used can be dangerous.
Anyway, weeks after the workshop; I became very curious and cautious about my data out there. My first thought was to request from the Ghana Police Service what data they have about me, but it looked too far away. So I decided to try the hospital I often visit in my community.
I visited the Mamprobi Hospital recently, one morning. I got to the Records Unit and I showed my patient card to the lady in charge, and I told her I wanted my records with them. Then the lady asked me “Who asked you to come for it?”. I responded to her that “No one asked me for it and that I want it for my personal use”.
She didn’t drag it, she just said “sit down and I will call you back”. I sat there for a few minutes and she called me back, she then directed me to another lady in the same unit. I went to this lady and she also asked me to wait for a while.
Within 5-10 minutes, I was called back. This other lady said to me “We can not give you what you are asking for, because the folder is ours”. I replied by saying that, “I don’t need the folder, all I want is my records”. Then she responded “We can give you the folder to make copies of what is in it and return the folder”.
I then inquired about the patients portal designed by the Ghana Health Service (GHS) “I thought you had a system where you have the data of all patients. Just print it from there for me”. “Oh, for that one we just started last year but your details are in the folder, if you were going to see the doctor, then we can update it for continuation”, she said.
I wondered how one could update something which was not on the system, maybe, when I attend the hospital for health reasons, that would be when the upload onto the system will be done, I thought to myself.
So one of these days I am going to go for a check up for no reason, then after a few weeks, go back for the print out of my health records to see if it is properly stored. There are concerns about how secured the GHS system is from hacks and other threats. But let us give them the benefit of doubt for now.
Moving away from that, Transform Health is running a campaign you should be interested in if you take your healthcare records seriously. They are ‘advocating for a health data governance framework which aims to engage people and politicians in the discussion on how we can build trust in the collection, use, management, sharing and disposal of our personal health data’.
My Data, Our Health is a global campaign by Transform Health that is being driven by community-based organisations who are engaging individuals on questions of access, control and rights over their health data. They are shifting health data from a technical issue to a personal one by putting individuals in the driving seat and amplifying their stories.
In May, 2023 the 76th World Health Assembly will take place. It will be a great avenue, before then, for us to raise awareness on this subject before the assembly meets. You may play your part by going to your health provider and requesting for your health records. Do well to visit transformhealth.org and read more on what the whole conversation is around this.
