For today, Silber's blog presents Catherine Cerisey, a French patient advocate and author of her blog "after my breast cancer", « après mon cancer du sein ». Since we launched the health 2.0 chapter meetings, community, and blog in France, Catherine has been present IRL and virtually via Twitter and tweet-ups #health20fr #hcsmeufr #doctors20. This June, Catherine Cerisey participated in the French-language Doctors 2.0 workshop about patient expectations.
Catherine and I had a rich exchange recently about the rôle of patients and I want to share with you her insights on "patient partner". Have as a well a look at this brief video animation called "Communicate" about the before and after of the Internet and its impact on the physician-patient relationship.
And here is the interview with Catherine.
Denise Silber : What is your perspective on the cancer patient's rôle? What has the Internet changed?
Catherine Cerisey : In a chronic disease such as cancer, in my observation, the patient has always known when and here it hurts, which drug brings relief, where the nurse can inject with the least pain; it is often the patient who sounds the alert of an abnormal pain that may lead to a series of tests, for example.
Since the internet, the patient has become an enlightened patient, if not an expert patient. Thanks to our online research, we know more about our disease, its treatments, its protocols, the medical jargon which used to be inaccessible to the average person. Unfortunately, many physicians think that the web has only obsolete and erroneous or ill-adapted information. But, who better than the physician can confirm or disprove the information and ideas that we can no longer avoid?
Whereas the physician-patient relationship, before the Internet, was strangely like a parent-to-child relationship, we now have the potential for there to be a true conversation between adults. It is urgent for physicians to take this new situation into consideration and engage in a true partnership with their patients. We must find a new balance and tend toward greater mutual comprehension and respect, the measure of a necessary humanity.
DS Concretely, how can this patient-physician partnership be demonstrated?
CC The partnership with the physician is very important. What would I want? A full view of my disease, the protocols, and the chances that WE have to cure my condition. This means:
• for me to be able to understand my disease, what I will live through, the list of treatments, the length of the treatment, whether I can be cured, or if this is chronic....
• for me to be able to adhere to the treament:
why this is the chosen treatment and not another, what are the expected side effects, what is the risk-benefit ratio?
• why the physician chooses the exams I must undergo
To be a partner is a two-way street; the main idea is RECIPROCAL TRUST.
• The physician should
trust the patient:
consider that the patient is able to understand the disease and its treatments; speak to the patient with a positive attitude and tactfully, and in light of current knowledge ; understand and even encourage the patient to get other opinions in order to be sure of the choice and establish a relationship of trust, which is indispensable ; accept to be able to say "I don't know" which enables the patient to understand that the physician is not God, even if he or she does the utmost to reach our common goal of curing the individual
• The patient should trust the physician he/she has chosen:
by adhering to the treatment that has been prescribed
and by being able to say things such as:
-- “I use alternative medicines for certain side effects". "I have risk-inducing behavior such as smoking and drinking" "I got a second opinion."
DS Finally, Catherine, would you tell us about your vision of the patient as a "health care regulator?"
CC To be the "regulator" of my health is a right and a reality today: the right to be informed, the choice of my doctor, the techniques and treatments ... If the doctor must propose the best therapeutic strategy, the patient is responsable for her life and is the final decision-maker, based on the information available. The patient is at the center of the health system and it's important that professionals take this into consideration... The wise doctor and the ignorant patient is no longer a reality, thanks to the internet and multiple sources of information, today.
DS A great thank you, Catherine for your contribution regarding the interest of patient partnerships and pro-activity.