Tuesday, September 20, 2011

What patients need to contribute to Information Therapy

Doctor Sourav Bose was finding it difficult to manage Mr Aditya Rao’s diabetes. Though he had changed the dose of the insulin thrice, his blood sugars remained high. He was at his wit’s end and did not know what to do. He put it down to “non-compliance” and wrote Aditya off as a “ difficult patient “ ! He failed to recognize that by spending more time with his patient, delving into his lifestyle, and asking him why he was having a hard time with following the treatment plan, he could have come up with an effective solution. Aditya was as much to blame ! He should have discussed the practical difficulties he was facing with taking the insulin injections in his office, as advised by the doctor, instead of meekly accepting his doctor’s advise – and then failing to follow it !

Information Therapy traditionally means the prescription of the right information to the right person at the right time to help make a better health decision. However, if we accept the fact that patients are at the center of the medical universe and that it is patients who are the true experts on their illness, then an equally important part of information Therapy should be the provision of information from the patient to the doctor! After all, communication is a two-way street and the patient’s personal perspective is as important as the medical perspective through which the doctor views the world.

Why has this been neglected so far? Why don't more patients provide Information Therapy to their doctors? This kind of patient education has a long and respected history! While writers have written on what it is like to be a patient for hundreds of years, one of the most important books that taught doctors to re-look at things from the patient's perspective was Norman Cousin's classic, Anatomy of an Illness. In fact, there is now an entire a genre of books that does this very well. This is called pathography - a narrative that gives a voice and face to the illness experience, by bringing the person behind the disease to the forefront!

Pathography is a very useful teaching tool. It helps doctors to learn empathy, so they can learn to see things from the patient's perspective. For example, though I am an IVF specialist, I am not infertile myself. By reading first person accounts of the trials and tribulations faced by infertile couples, I learn a lot about the problems that my patients face – problems that they may not be willing to talk about when they meet me for the first time. All doctors learn medicine from their patients. As Sir William Osler said, ‘He who studies medicine without books sails an uncharted sea, but he who studies medicine without patients does not go to sea at all.’ Unsurprisingly, his best-known saying was ‘Listen to your patient, he is telling you the diagnosis,’ which aptly emphasizes how much a good doctor can learn from a patient!

Doctors usually remember their most challenging patients or their most complex and difficult cases all their life – these often form the defining moments in their professional career. It is true that these exceptional patients teach us a lot and good doctors treasure them, since they learn the most from them. These are a doctor's ‘memorable’ patients - many of whom teach us what not to do ! Intelligent doctors learn from their patients all the time, but this can only happen if patients are willing to teach them! These are the ‘expert patients’ - those who are articulate and treat their doctors as partners in their medical care.

Doctors can learn from every patient, but only if patients learn to speak up, and doctors learn to listen. It is not that doctors are going to learn medical facts from each patient – but each patient is unique and has valuable insights to offer. Patient feedback helps doctors to improve their services, and even complaints are gifts, when taken in the right spirit! Unfortunately, there are still many barriers to getting feedback from patients. Most patients are inhibited and scared and do not have the courage to displease their doctor by telling him the unpleasant truth. If patients want their doctors to do a better job, they need to learn to speak up. Most dissatisfied patients today just walk out of the doctor's clinic and never return. They find a better doctor - but by failing to give the doctor honest feedback, they lose the opportunity to help him improve and do a better job with his next patient. Similarly, most doctors are too busy to ask for feedback, and most continue deluding themselves that they do a perfect job with every patient!

Hopefully, the Internet will allow patients to offer critiques and criticism more easily. There are now many doctor-rating websites, where patients are encouraged to provide their opinion about their doctor. This kind of patient-generated content will help doctors to get their act together, if they are willing to keep an open mind and try to correct problems. Thanks to the Web, smart patients have adopted a number of clever initiatives towards improving medical care. These e-patients, of whom the most prominent is Dave ( www.patientslikeme.com) , are speaking up and claiming their rightful place in the healthcare ecosystem, so that patients now have a voice which is heard, and more importantly, respected.

Online patient support groups have a lot of clout – and crowdsourcing the collective experiences of hundreds of patients can actually help advance medical research, as proven by innovative sites such as PatientsLikeMe (www.patientslikeme.com). Patients are also collaborating to fund clinical studies, so that doctors can do research on topics that are of interest to patients , and not just on areas which pharmaceutical companies find remunerative . Patients have also taken a lead role in simplifying medical research so that it becomes understandable to other patients. Cochrane Collaboration (www.cochrane.org) is a fine example of how it is important for researchers, providers, practitioners, and patients to collaborate. 28,000 people from over 100 countries work together to help healthcare providers, policy makers, and patients make informed decisions about healthcare. Such collaboration is imperative in today’s times. When individual knowledge turns into collective knowledge, medical care is substantially enhanced!

HELP will be organizing its 2nd Annual Conference on Putting Patients First. The theme this time is : Using Information Therapy to Put Patients First in India.
The website is at http://www.patientpower.in/

This will be held at Nehru Centre on Sunday, 9th October’11 . Mr.Ken Long , Vice President, International Operations at Healthwise, U.S.A, will be the keynote speaker and he will be talking on “What Healthwise is doing in the US to Promote Information Therapy – what we’ve learned so far”.

On this occasion, we will be releasing a book titled, Using Information Therapy to Put Patients First.
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