Ownership of Medical Data: A South African Anecdote

There is a worldwide, profession-wide debate about the ownership by patients of their own medical records. Eric Topol deals with it in his book The Patient Will See You Now and in April this year the New York Times published a piece about The Healing Power of Your Own Medical Records.

Only twice have I ever had access to doctors’ notes about me: after I got the Paeds Sick a few years ago, I was provided with a duplicate copy of my notes. I didn’t request them, or need them, but I liked having them. And when I was diagnosed with subclinical hypothyroidism I was provided a copy of my blood results, so that I could show them to whichever clinician I happened to visit subsequently.

But in South Africa there is one piece of medical data that is always available to its owner: the maternity case record. Every pregnant woman is provided with a maternity book, containing information about their previous pregnancies, their family history, their HIV-status, and every antenatal care visit they attend. This case book also contains a partogram, space for notes about the delivery or C-section, and for puerperial notes. It’s not really revolutionary in that these kinds of records have always existed, but now, much like a child’s Road to Health Chart, they are standardised around the country (in the public sector, at least).

Women can go to any antenatal clinic in the country, and their provider will not only know what to do, but have access to the notes any other provider made about the patient. It sure isn’t electronic, but in a system where many clinics don’t have working, connected computers, it does the job. I am certain the document was devised to assist with the problem of an extremely mobile South African patient: today they are in their hometown, tomorrow they have traveled 300km to their ancestral village for a funeral.

In general, our patients don’t lose these records. I’m not saying it never happens, but usually by the time these moms deliver, their maternity records are so tattered from carting it around to their antenatal visits.

I’ve seen some instances of women purposefully losing these records: invariably because they realised that their HIV status was included in the record. I’ve even had a patient request that I leave that section of her record blank. It’s a very difficult part of this system, and I’m not sure what the solution is beyond education and elimination of stigma.

What struck me was once, while rounding on my antenatal patients in a high-risk ward (women with pre-eclampsia, placenta praevia, gestational diabetes mellitus, and so forth), I noticed that every time I finished with a patient and walked to the next, she would lean forward, take her maternity record and read what I had written.

I loved it!

These are patients who often have not finished high school, and who often don’t have a firm grasp of English; and whom the world stereotypes as “not caring” about their health: and they wanted to read what I had written about them! I can’t describe the excitement I felt. Not only was it affirming to me, but it made me HAPPY to see patients take an active interest in what I wrote about them.

I’m not sure what the situation is like in other countries, but in my training, patients being able to read what I write has never really been a foreign concept. We leave patient files at their beds (with the exception of psychiatric patients), and when they are discharged they walk with their own files to the dispensary where they finally hand it in. So the possibility that a patient might read their notes has always existed.

But why have I never SEEN it done before? Why, during anaesthesiology and orthopaedics, do I not see my patients reading their notes when I leave their bedside? My only guess is that pregnant women feel as though they truly own their records, and have been told how important their records are: and so they not only feel free to peruse their notes, but they also begin to take an interest in them.

In this way, access to one’s personal medical records is not only healing, as Steve Lohr writes – it is also empowering. And empowerment is something our patients direly need.

The more I think about it, the less I understand why doctors do not want their patients to have access to their own notes. We are trained to be professional, and as medical notes may be scrutinised in a court of law they should always be written in a professional tone. So why would one write “++fat!” when you could write “BMI = 36”? Why would you write “difficult patient” when you could write “has many questions, unwilling to commit to treatment currently”?

If a doctor fears that a patient reading their notes would lead to litigation, then they’re probably doin’ it wrong.

Medical litigation is not as big in South Africa as it is in the USA, but the incidence certainly is increasing. A nasty phenomenon has emerged where nurses at some primary hospitals were found to sell patient folders to lawyers. Although it is certainly a multi-faceted problem, when a patient feels their doctor is keeping information from them one is asking for trouble. So why bother?

I want my patients to read my notes about them. I want them to be fascinated by their own health and disease, and I want them to ask me if they don’t understand what I wrote. I want their interest to hold me accountable.

When I realised how my antenatal patients perused their maternity records, I started writing them instructions. How often do we not feel swamped by all the information a doctor gives us, and then forget half of their instructions? So I wrote to them, “Remember to take a walk around the block!” or “Cranberry juice!” or even, “Have you felt your baby move today?”

So why not?

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Extra Reading:

Medical Records in South Africa: An MPS Guide

Assessment of the use of the new maternity case record in improving the quality of ante natal care in eThekwini District, KwaZulu-Natal; Sibiya, Cele and Nxongo; International Journal of Africa Nursing Science; April 30 2015