Ownership of Medical Data: A South African Anecdote

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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.

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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?

  *  *  *

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

10 thoughts on “Ownership of Medical Data: A South African Anecdote

  1. I completely agree ! Patients need to be fully aware about their examination and treatment results. We have similar antenatal cards here in Gujarat, India called ‘Mamta Card’. It also carries illustrated instructions about immunization,breast feeding , danger signs.
    I think it plays a huge role in getting the mothers more involved and invested in taking care of themselves and their babies🙂

    • Yay, thanks for sharing the Indian perspective! Our pediatric Road to Health Charts also have illustrations about breastfeeding and danger signs. I quite like it because it’s fairly understandable even to illiterate patients.

  2. Love this one. Why should patients ever not have access to their own medical records?:/ but what got me about this post was how passionate you are about your patients🙂
    Doctor Level: Epic Win.

  3. I’m with you — I can’t understand why it’s so difficult for patients to look at their own medical records, and why some physicians are so resistant to the idea. You shouldn’t be writing anything in someone’s chart that you wouldn’t want them to see. Plus, patient empowerment! Involve them in their care! etc etc

  4. Really interesting piece and something I think is done very badly here in the UK. Here nurses and doctors refuse to show you your own notes, unless you make a formal request to see your medical records. This often costs anything from £10 to £50 (R200 to R1000) per request and can take up to 40 days. I feel these are obstacles which prevent majority of patients to engage in their healthcare as you described in the post. I personally felt insulted when I was refused a glance at my operation notes since I felt the consultant surgeon had not explained adequately to me because he had to rush off home. I then only got satisfactory explanation when I asked the nurse whether there is a junior doctor I could talk to.

  5. My doctors who by the way are South African are brilliant they explain everything clearly and are happy to answer any questions. I’m not sure if in Australia we have to pay for the records or not but I do know that the more rural and remote you are the harder it is to get access to adequate medical help and allied health is tricky to access, I lived 10 yrs more or less in the middle of Western Australia often Drs didn’t want to come that far our, not sure why I loved living there and the flying doctor could be called if necessary. I reckon patients should have access to their records because if Drs don’t want people to read their records then they should clearly explain their treatment plan etc and don’t write anything in there that they wouldn’t want a patient to see in the first place, I think that if a dr is a great dr the patient should have the information the need and any questions they have clearly explained to them before they leave. My Drs always make me feel welcome and also know what going on re treatment etc. they actively encourage me to take an interest in my health etc, I’m study psychology at the moment. I’ve also found the nurses I’ve dealt with are very knowledgable too.

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