If there is so much free, high quality patient information around, why don't more patients utilise this ?
I can think of two simple solutions to improve utilisation.
I can think of two simple solutions to improve utilisation.
Firstly, doctors should prescribe this information. Patients have high regards for their personal doctor, and most of them will follow instructions, when told to do so by their doctor. If a doctor gives you a brochure to read, the chances are very high that you will do so ! However , doctors are busy people, and often forget to prescribe information. Also, doctors can be intimidating ! If you don't understand what your doctor says, you are too scared to ask for clarifications. Also, his time is precious, and using it on educating patients may not be the best way of maximising physician efficiency.
There is another option, which I feel will be far more effective. This is to get patients to teach other patients. There are many benefits to this approach which has been done informally for many years, but can be done much more efficiently on the web !
The " expert patient" is one who has had the illness for some time; knows a lot about it because he has done his homework; and is willing to share his knowledge with others, as a labour of love. This person is likely to be a much better teacher than any other source, for many reasons.
Firstly, because he ( or more often than not, a she !) is doing this because he can empathise with the distress other patients are suffering, he is likely to devote considerable time and energy into doing a good job. While educating patients is often a low priority for doctors, for the expert patient, this is a high priority because he wants to share his learning, so that others do not have to suffer.
He is much more likely to "think out of the box" and use all the clever new technological options to make the learning much more fun, stimulating and interactive. Most doctors know a lot about medicine - but they don't know much about teaching or learning. E-learning has gone through dramatic improvements, and it's possible to create clever games , simulation and videos to make learning much more sticky and fun !
Because he is not a doctor, he is likely to use simple English to explain complex concepts. Not only is this much easier for others to understand, it is also much easier to read and comprehend. While doctors are good at writing for other doctors, they are often not good at communicating in simple terms.
He is much more likely to "think out of the box" and use all the clever new technological options to make the learning much more fun, stimulating and interactive. Most doctors know a lot about medicine - but they don't know much about teaching or learning. E-learning has gone through dramatic improvements, and it's possible to create clever games , simulation and videos to make learning much more sticky and fun !
Because he is not a doctor, he is likely to use simple English to explain complex concepts. Not only is this much easier for others to understand, it is also much easier to read and comprehend. While doctors are good at writing for other doctors, they are often not good at communicating in simple terms.
The expert patient writes as a result of his personal experience. This makes his writing much more authentic and heart-felt. Equally importantly, because he has "been there, done that", he is much more empathetic and this is communicated to the reader very quickly. This allows the reader to identify with the writer and this emotional bonding sets up closer ties, which makes learning much more painless.
It's much easier for the reader to ask questions and get clarifications. While doctors can be intimidating, it's not very scary to ask a fellow-patient questions which are likely to get intelligent and intelligible answers.
Because all this information is usually provided with a prominent disclaimer which usually states that " I am not a doctor", it encourages the reader not to accept this as gospel truth and to do his own exploring. Just because information comes from a doctor or Mayo Clinic does not mean that it is true - but because it has been produced by an "expert", readers are much less likely to question it , which means they are less inclined to find their own path.What about the risk that this information my be incorrect ? It's true that there are a lot of dogs on the internet ; and that a lot of information can be rubbish, but this is true of information published by doctors as well ! Community monitoring to ensure correctness of answers can help to ensure the content is reliable and uptodate. The wikipedia is an excellent example of what an empowered community of lay-people, experts and non-experts can do !
Also, because of the " wisdom of the crowd " , this sort of format is likely to allow a number of alternative viewpoints to emerge. I don't think anyone has a monopoly on truth and this approach can help to clearly define the controversial areas. Because it also emphasise the areas of ignorance and doubt, it can actually help research to focus on finding answers to problems which are important to patients !
Because this information is produced by a patient, it is far more likely to be practical and of greater utility to the patient in his daily life. Thus, while a doctor may wax lyrical about theoretical concepts and his pet areas of research, patients are much more focused on stuff they can use in their regular day to day activities.Finally, because expert patients are not likely to have vested interests ( at least until they get bought over by pharmaceutical companies), it's much more probable that this information is reliable and not contaminated by commercial influences !
I feel it's not possible to teach anyone - everyone has to do their own learning ! Cleverly produced materials from another patient are much more likely to encourage patients to do so.
I feel it's not possible to teach anyone - everyone has to do their own learning ! Cleverly produced materials from another patient are much more likely to encourage patients to do so.
Thank you for your input on this issue. I agree that utilizing community members especially those that have gone through the experience of the disease is a beneficial method to outreach to the community. Moreso with chronic diseases such as cancer. We name them " Community Educators" and they would be more powerful if trained. Working in breast cancer awareness, we have found that Cancer survivors are also a very good method to educate, encourage women to care for themselves before and after disease.
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