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.”
A PDF of the full article is available for download.
The Wall Street Journal featured a story by Amy Marcus on new initiatives to help patients access their own health data and to become more active participants in medical research. It features commentaries by Sharon Terry, CEO of Genetic Alliance, Stephen Friend, President of Sage Bionetworks, and John Wilbanks, a Sage Bionetworks Director.
As described in the article, it seems ironic as well as cruel that researchers traditionally will not give research subjects’ clinical data back to them. Patients give time, information and often literally a piece of themselves to countless research projects every year with little or no expectation of a return other than helping improve healthcare. Such altruism is essential for meaningful scientific progress and yet the patients often feel alienated and disrespected.
Medical researchers have a poor track record of sharing data with their peers for fear of being scooped for a publication or diluting their chances for grants or promotions. This hoarding for personal benefit behavior exists despite the fact that public taxpayer dollars usually have supported the research and that investigators agree to share data as a condition of grant funding. Sadly the results are that such clinical data is rarely re-used, re-examined or combined with other datasets costing time and money in the hunt for better therapeutics.
Amy Marcus reviews efforts by ‘health hackers’, citizen scientists who believe that there is too much secrecy in medical research and have established new initiatives for patients to exercise their rights on the use and the sharing of their data. Projects like THAT’SMYDATA seek to engage the public as active participants in contributing clinical and molecular data to researchers as well as in assuring that the data is shared according to their wishes.
There are many points of view on these efforts and this controversy is but one facet of the changes concomitant with an increasingly informed healthcare consumer population. The Wall Street Journal article attracted over 70 comments in two days. Some physicians do not think that the public should have access to scientific data without guidance by professionals. Some scientists worry that unsophisticated citizens will not be rigorous with study protocols and might be highly biased when interpreting or communicating data. Other researchers see increasing professionalism among citizen scientists and a chance for innovation and creativity that may be lacking in the current healthcare environment.