Medical data sharing

The move to the new hospital building has brought challenges and opportunities.  For example, provision has been made for an oncology centre. As a result, a new group of us will be working together.  Most of us have electronic notes but we use different systems.  How can we share our data? What are the regulations that govern us?  We held a workshop on the issue of data sharing.  Jean Claude Smith, the founder of DigIt, ran the workshop and we discussed several topics.

Safety of Data:
Last month, about 100 000 organisation were attacked by Wannacry.  In simple terms, it is a worm that manages to gain access to a computer through emails.  By opening an unsolicited email, the worm gains access to the computer, encrypts the files and demands payment in bitcoin to regain access to the data.  Amongst other organisations, the NHS was attacked.  I am sure individual doctors around the world were also targetted.  Jean gave us the following advice:
1. Prevention is the best method of defence
2. Don't open unsolicited emails or download suspicious files
3. Regular backup
4. Install anti ransomeware engine on your computer
5. Turn on Windows firewall

POPPIAct: how does it affect us?
In 2013, South Africa passed legislation known as the POPPIAct.  The aim of the act is to ensure all South Africans store, share and use data responsibly.  As health practitioners we:
1. Must give consent before our data is shared
2. Need a valid reason for collecting data
3. Are responsible for ensuring the data is used correctly
4. Must know who has access to the data
5. Must maintain the safety of the data
6. Must collect data accurately

So, as a group of individual doctors, can we legitimately share our data, adhere to the POPPIAct and still use our own electronic notes?  The answer is probably "no".  The problem is not unique to us.  In 2011, the NHS scrapped an attempt to merge notes having spent £12bn

For us, it looks as though sharing will not be possible so we will have to start again

 Contact Dig IT


Oncology Centre CBMH: Breast Course for Nurses

We have been at the new hospital for 6 months and have run our first Breast Course for Nurses.  The plan is to open an oncology unit which should be ready for chemotherapy in about 2 months and radiotherapy in 5 months.  As part of the process, we have had a Western Cape based BCN for the staff working here, those who will be involved in the new centre and cancer survivors involved in support.

Sr Lieske and Dr Anne Gudgeon
Carol van der Velde and Michelle Norris
The morning started with Dr Dedekind going through changes in the normal breast.  Having discussed clinical evaluation of a woman with breast problems, we had a lecture on investigations of the breast given by Dr Dicker and Carol van der Velde.  Dr Ann Gudgeon gave an overview about breast cancer treatment then Sr Correia shared her vast experience on wound management with us.

Suzi demonstrating lymphedema therapy on Claudine
 In the afternoon, we started with a session on lymphoedema management which was organised by Sr Lieske. We were joined by Kate Brinckmann, Dr Clare Neser (reconstructive surgeon) and Suzi Davey.  Kate gave us an overview, Clare discussed the role of surgery for the management of lymphedema and Suzi discussed the non surgical management.    There are now more than 70 certified therapists in RSA, 2 in Zimbabwe and one in Botswana.  To find a therapist in your area, please go to the loasa website.  (There are lymphedema therapists at both Tygerberg and GSH.)

Maryan Halefe and Dr Britta Dedekind

The day ended with Linda Greef talking about advocacy.  She reminded us that advocating about cancer includes advocating for transport, schooling as well as support for the individuals

There are 4 levels of advocacy
1. Individual advocacy
2. Community advocacy
3. Institutional advocacy
4. Political advocacy

What the day has emphasised is the importance of a multi disciplinary approach to the management of a women with breast cancer.  This doesn't just mean the input from specialists from different areas but input from all manner of medical and non medical professionals. A big thanks to Michelle Norris, Theresa Roux and Chris Tilney.
The redoubtable Linda Greef