Greg Beier, Bagooba’s Chief Evangelist, has a thoughtful post on the value of sharing information where he highlights Stephen Friend and Sage Bionetworks’ efforts to encourage and facilitate the sharing of research data. He notes, “This movement is so interesting on so many levels and could find application in so many other areas where poor incentives are leading to stakeholders withholding information for private advantage.”
Peter Kapitein, an unstoppable Dutch cancer patient advocate who leads Inspire2Live, has written a wonderful article illustrating the need and importance of patient-doctor communication. As a cancer survivor he advocates a strong partnership between patients, their supporters and physicians. Acknowledging the need for patients to be active participants, he describes the role doctors should play:
“There is no denying that informing a patient diagnosed with cancer of his situation and the possible treatment is among a medical doctor’s less enviable duties. But no matter how difficult, a duty it is. So, how best to go about it? Well, a good start is, as I once heard a young physician put it, to “look into the patient’s eyes to see if your words are being understood. If they tell the opposite, then start explaining again, using different words.” After each explanation, interview your patient to see if he has understood so well that he will be able to inform his dear ones back home. Meanwhile, try not to think of the other patients in the waiting room. They will just have to wait a bit longer. And they will not mind once they know you need more time as you are more focussed on the patient than on the disease.
A doctor must endeavour to be as explicit as possible when informing a patient of his condition, no matter how unfavourable this information is. His chance of surviving or the need to undergo a severe treatment is no information any patient should be left in the dark about. Moreover, a patient has a right to know what to expect in order to be able to prepare for a treatment or the few months left him. But it is not just the doctor who is responsible for transparency towards his patient. The latter, too, has a duty to get to the bottom of his situation. And if he is unable to do so himself, he should bring along someone close to him to ask the relevant questions.”