Thursday, June 25, 2009

Patient education - a new approach

Traditionally, patient education has referred to the education of patients by doctors, nurses and other healthcare professionals. This is a a result of the paternalistic medical model in which the doctor was the expert and told the patient what to do. This kind of patient education remains extremely important today, because patients need to learn about their diseases, and doctors are professionals who are experts in anatomy, physiology, pathology and therapeutics.

However, I feel an increasingly important type of patient education will be education by patients, where patients educate doctors ( and other healthcare professsionals) about their illness.

While doctors are disease experts and a know a lot about pathology, the patient is the one who has the illness - and it's the patient who is an expert on himself ! Since he is the one who has to live with the disease 24/7, expert patients are treasure houses of information . In the past, grandmothers were the traditional dispensers of home medical remedies and the court of first resort when any one was sick. Unfortunately, most of this knowledge was either locked up in the expert, who had no effective way of sharing it with others ( except by word of mouth); or this wisdom was undervalued, because the patient was not a doctor and therefore not considered to be an expert.

The good news is that it's become much easier for expert patients to share their expertise. For one, doctors have learned to value the contribution of the patient and they respect the central role patients play in managing their own disease and in getting better. Equally importantly, the internet provides a great tool which allows patients to share their wisdom !

How can expert patients educate doctors ? Some steps are simple. They can provide feedback about the medical services and facilities on offer, so that doctors can improve their clinics. After all, how will doctors improve if patients don't tell them what they want ?

Patients can be one of the best sources of CME, or continuing medical education for the doctor. They can offer to share what they have learnt about their disease . Patients have a lot more time to research the internet about their medical problems; and with the help of a doctor, patients can often do a much better job in finding out about new advances. This could include locating clinical trials; experimental drugs; or getting in touch with the world authority on a particular medical topic.

Observant patients provide feedback about what the effects of the medical intervention have been. Medicine is an inexact science - and telling the doctor about what works and what does not is extremely valuable. It's only when an empathetic reseacher observed that patients who were enrolled in a clinical trial of viagra ( for treating their hair loss) refused to return their surplus medications that he realised that the viagra was helping them improve their sexual life - and a billion dollar block buster was born - thanks to observant patients - and an observant doctor !

Good doctors have always known that patients are their best teachers. Traditionally, expert doctors ( for example, professors in medical schools) learnt from their patients and then shared this knowledge with other doctors by publishing the results of their research ( in the form of case
studies or controlled trials) in medical journals. Even today, a good doctor knows that every patient has something valuable to teach. After all, biology is an inexact science, and life is full of surprises and twists. Senior doctors learn to value the exceptional patient and the unusual one, because of what they can learn from them.

Sadly, some doctors still feel threatened by the well-informed patient. These are typically doctors who have low self-esteem; or whose knowledgebase has become outdated because they do not have time to keep up with medical advances.

Good patients will not only spend time in educating their doctor, they will also spend a lot of time educating other patients. Patient education of patients by patients if often far more affective and useful, because it's peer to peer ! Patients speak the same language; share the same concerns; and establishing rapport is muc easier, because they have "been there, done that !"

All of us are going to be patients some day; and illness is a fact of life. We all learn to live with our illness - and the smarter and more enlightened amongst us realise that one of the best ways of coping with this crisis is by helping others. Expert patients are generous with their expertise and knowledge - and use this to help others. This could be simply by publishing a blog, to help others with practical tips ; and to provide emotional support, so that they know are not alone in their struggles. Other patients are more ambitious and will start support groups; or publish a book; or even raise funds for patient advocacy and medical research.

You cannot choose your illness. But how you battle it is in your hands ! Learn to share - this is good for you - and for others as well !

1 comment:

  1. Anonymous11:15 AM

    We have been trying to have a baby for 2 years now, and after 4 IUIs, still no results. We are advised to go for IVF, but face 2 big issues:

    1. Different doctors advice different treatments, and have different opinion even on the same test report - so confusing.

    2. Our doctor, a reputed IVF specialist, is so so busy. I dont expect her to remember all the facts of our case, as she is seeing so many patients, but atleast she should go through her own notes for a minute before treating us. Half the time she tells us to go for a test/ treatment, which my wife then reminds her that we have already gone through that!

    Am in a really confusing/ difficult situation.


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