Africa Analysis: Getting telemedicine informed consent
- Telemedicine roll-out in Africa has issues, such as protecting patients’ rights
- New research in South Africa shows patients do not understand telemedicine terms
- Africa should develop novel ways of getting informed consent for telemedicine
On the face of it, telemedicine advances should mean cheaper and better medical care for patients in remote or poor areas. For instance, video calls would allow patients in rural clinics to ‘see’ distant specialists without either party needing to travel.
However, although the technological basis of telemedicine is well established, with mobile networks now reaching the majority of the continent’s inhabitants, its roll-out poses challenges across Africa.
“A key challenge is protecting patients’ right to give informed consent to the consultation and treatments, as well as understand how their personal medical data will be treated. This is important from the doctor’s perspective as well, as it is a safeguard against liability.”
A key challenge is protecting patients’ right to give informed consent to the consultation and treatments, as well as understand how their personal medical data will be treated. This is important from the doctor’s perspective as well, as it is a safeguard against liability.
However, informed consent is tricky when it comes to telemedicine, as new research from South Africa shows.  New ways of obtaining such consent need to be explored in order to safely roll out telemedicine across Africa.
Lost in translation
Informed consent is an old concept in medicine. According to international standards, the minimum requirement when providing care is that the patient understands what will happen to the best of his or her ability, and formally agrees to any treatment undertaken.
There has been a lot of discussion over what constitutes adequate understanding in cases where linguistic or educational barriers stand in the way of patients’ comprehension.
For instance, key medical terminology may not be easily translated into local African languages. Many research studies point to language barrier as a key problem when accessing healthcare. [2, 3]
Where language is a problem, so-called ‘cultural brokers’ can be used to obtain informed consent. These people could be nurses who speak the local language and also understand the technical concepts, and are able to explain them to the patients.
However, with telemedicine there is technological jargon on top of the medical jargon. This brings an extra layer of complexity to the process of obtaining informed consent, in addition to the additional risks associated with remote healthcare.
A South African experiment
The extent of the problem was explored by four researchers from the Nelson Mandela School of Medicine at the University of KwaZulu-Natal in Durban, South Africa. Their findings illustrate the problem facing gettinginformed consent in telemedicine settings, and are published in the May 2014 issue of the South African Journal of Bioethics and Law. 
“New ways of obtaining such consent need to be explored in order to safely roll out telemedicine across Africa.”
The researchers tested the understanding of 53 patients seeking healthcare at rural hospitals in KwaZulu-Natal on 41 keywords relevant to computer terminology and consent. The keywords included words such as monitor, email, confidentiality, network and wi-fi.
The words were translated from English into isiZulu, the local language of the region around Durban. Some of the words had no satisfactory translation, and were ‘isiZulufied’ or simply left in English. The isiZulu words were then presented to the Zulu-speaking patients, whose understanding was gauged.
The results were not encouraging. Nine out of ten of the patients did not understand the terms video conference, electronic records, intranet, real-time, hacker or e-prescription. Three out of four did not understand the words email and monitor.
Perhaps most worryingly, only a third of the patients participating in the study were found to understand the word consent.
The study's failure to capture the educational levels of the participants is problematic. Without this information, we can't say for sure whether the lack of understanding is typical of a particular educational level, or whether there are other factors at play, such as social or cultural factors.
But is it really such a big problem? It may seem unethical to consider denying cheap and effective healthcare to vulnerable rural populations just because their understanding of the concepts involved may be less than satisfactory.
After all, many face-to-face consultations and treatments do go ahead despite patients not understanding the concepts and terminology involved.
But it’s not quite as simple as that. A big part of the problem is the novelty of telemedicine in African healthcare settings. The fact that it’s new to patients makes it extra important to account for all the risks involved.
For instance, South Africa’s draft guidelines for telemedicine practice require that written consent from patients is obtained before telemedicine encounters take place.
The authors of the South African study say that once telemedicine becomes more common, the need for informed written consent may fall away like it does in many face-to-face healthcare encounters. The patient’s presence at the consultation is taken as implicit consent to be seen and evaluated by the doctor.
But this is still some ways away. Telemedicine will continue to be a novel, but useful, intervention across rural Africa for some time to come. Thus, pragmatic novel ways of getting informed consent for telemedicine encounters need to be developed on the continent.
Journalist Linda Nordling, based in Cape Town, South Africa,specialises in African science policy, education and development. She was the founding editor of Research Africa and writes for SciDev.Net, Nature and others.
This article has been produced by SciDev.Net's Sub-Saharan Africa desk.
References African Journal of Bioethics and Law doi 10.7196/sajbl.291(2014)
 African Journal of Primary Health Care and Family Medicine doi 10.4102/phcfm.v6i1.576 (2014)
 South African Medical Journal 96, 10 (2006)