From the experts: Can patient empowerment make a difference?
The father is an electrician in Dubai; the mother a housemaid in Dhaka. Their 19-month-old girl had a critically located, malignant brain tumour which had produced gross hydrocephalus (retention of fluid).
The fluid was diverted into the abdomen through a shunt in the girl. The shunt had worked too well, resulting in the brain shrinking. That produced a large clot between the brain and its coverings.
The chubby child was happily playing, totally oblivious to the discussions taking place between her parents and the doctor.
Twenty-five minutes were spent elaborating on the various treatment options available - ranging from complex microsurgery for the tumour, removal of the shunt which had produced the blood clot, ligating the shunt, and even a period of observation while waiting for new clinical signs to develop.
Also possible was a combination of the above options at different times.
Benefits, limitations of different types of radiotherapy, chemotherapy, looking for tumour markers in spinal fluid in lieu of biopsy, the natural history, mortality, morbidity with multimodality therapy, were discussed. It was evidence-based medicine at its best.
The discussion, based on 38 years of knowledge and "wisdom", would have elicited kudos in any postgraduate examination. It even took into account socioeconomic factors, parents' wants and desires, quality of life, and so on. To expect the mother to digest and critically evaluate the information provided, and to choose an optimal treatment option, is wishful thinking.
Would prior knowledge have assisted her in participating in the decision making? Not necessarily.
But in the banal world of health care, health literacy is perhaps more important than antibiotics, access to diagnostics or state-of-the-art therapy in altering health outcomes.
But unfortunately, the uninformed patient is a universal phenomenon. For millennia, doctors have been on a lofty pedestal often taking a "holier than thou" attitude. Some doctors could even view proactive methods to empower patients as a step in a backward direction.
In this information age of DIY, is it not the responsibility of government and society to ensure health literacy?
Health literacy has been defined as the ability to read, understand and act on health care information, to be able to judge, sift and use reliable information in the context of one's own health.
If a patient does not understand the full implications of the diagnosis, and importance of prevention and treatment plans, an untoward event may occur. Health illiteracy is often the reason for health disparities.
In the past eight months, I have initiated a knowledge empowerment programme using multi-point video-conferencing. Using the internet-enabled Village Resource Centres of the MS Swaminathan Research Foundation in rural Tamil Nadu mssrf.org consultants from Apollo Hospitals Chennai telemedecineindia.com have interacted with more than 4,500 villagers from 13 villages.
Using multiple-choice questions, knowledge levels were measured before and after the talks. A modest increase of 20 per cent was attributed to unfamiliarity with the questionnaire model; in fact, some scored less after the talk.
Feedback revealed that the villagers were delighted to listen to authenticated information on common health issues in a language they understood. More importantly, the attendees had discussions with those who were unable to come.
Preliminary studies indicate that such empowerment could alter health outcomes. An informed questioning patient will ensure better doctors and better health care.
As Sir Muir Gray, the former chief knowledge officer of Britain's National Health Service, once said: "In health care, knowledge is as important as antibiotics."
Medicine is not black or white, but shades of grey. Knowledge of one's health condition and involvement in the decision-making process is crucial. It is the prerogative of every citizen to know what works for whom, when, where, why and at what cost.
The author is a past president of the Telemedicine Society of India and the Neurological Society of India. firstname.lastname@example.org