A Career In Medicine Is Needed To Attend! Says Who?
Medical conferences have become hubbub of displaying the latest in medical technology and knowhow. They give platforms for representing the future and a meeting place for those who were the chief architects for it. Pharmaceutical companies have always been an integral part of this presentation. One can argue about the ethics of it endlessly (read ACC 2016 advertising) but it is a reality that one may choose to ignore. However conspicuous by their absence have been patient representation at these meetings.
Come to think of it, I have never seen a panel hosted by, or hosted with, any patient advocacy groups. This is veritably a questionable thought. Where we may worry about patients understanding what goes on at the conferences, it may also be an insight for them into what goes on within a conference. How progress may happen, get validated amongst peers (or even castigated for that matter) and finally assumes the form that is presented to the patients in the form of options of therapy. In my opinion, it could be a window for patients to understand the disease of their choice, and obtain firsthand information about the challenges physicians face when treating them. In the long run, this may lead to better decision making and thereby greater co-operation between patients and physicians.
‘Necessity is the mother of invention’ or so it goes. We as physicians are involved in the invention side of management and patient care, but that’s only 50% of the partnership, the other 50% is the patient and their families. Treating a patient essentially involves a person to be treated, in addition to the person treating them. In our need to help serve our patients better, we perform trials, conduct translational research, and attend conferences to improve our output thereby optimizing our abilities and skills. But in this quest for knowledge, we do not usually involve those who are suffering from the disease itself. Their unique perspectives could form an alternate view for our ideas, and perhaps even provide a solution to management issues. We have all heard inspirational stories about physicians who have undergone personal trysts with diseases, either first hand or in a family member, during the formative years, and grew to be leaders dedicated to disease management. However, not all such people become physicians. Not all of them can contribute back to disease management even if they wanted to. There could be the nidus of an idea, the solution to a management issue, or simply stated, a patient or a relative with the domain knowledge to solve a seemingly insurmountable clinical problem, who has not known how to contribute. These form a clear majority of people with ideas, who, if provided with an avenue, could be the difference between a festering issue and a problem long solved. Greater opportunity for patients to be involved in their care could be initiated and grand conferences may just be the way they could be exposed to the challenges facing the community as a whole.
Patient advocacy groups have been good sources of support and have been extremely effective in raising the issues crucial to the patients. Providing them with a platform at major meetings and incorporating them into the scientific discussion of disease management, providing us with certain ground level voices, in our research could again prove extremely useful to guide policies. Dr. Victor Montori has been actively championing the cause of medical care tailored to patient lifestyles, not as commandments dropped in from an ivory tower. A big team of nurses, rehabilitation personnel, and voluntary home care worker networks exist already. They are over-burdened in the post medical care of our cardiac patients. Being able to tailor regimens that are minimally disruptive to patients, within the confines of possibility, remains a challenge. Active participation and interaction with patient advocacy groups in the setting of a conference shall be useful in being able to educate them about the current challenges facing us, as well as take their opinions in being able to incorporate patient perspectives. Thinking about it further, this could be a specialized branch indulging in tailored patient care.
Everyone knows the four blind men and the elephant story. However, the story never alluded to what they could have achieved, had they worked together. Diseases may present a similar challenge. In omitting additional opinions coming from experiences which are radically different from our own, we may be fighting with an arm tied around our backs. It may not be perfect, or logistically sensible, but a way must be found to involve the other side in the finding answers to questions mocking us. This will allow us to do better what we have always set out to do, treat the patient.
Deepak Padmanabhan, MD
Clinical Cardiac Electrophysiology Fellow, Mayo Clinic, Rochester, MN
Deepak Padmanabhan is an Electrophysiology fellow at Mayo Clinic , Rochester, MN. His research deals with ventricular arrhythmias, cardiac device therapy and translational medicine. His opinions are solely his own. Follow him on Twitter @manak_18.