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Posted on June 11, 2013 at 2:27 AM


It was very interesting for me to read a Viewpoint article in the June 12 2013
issue of the Journal of the American Medical Association (JAMA). It has to do
with medical research and the role of patients in that research. The article is
titled “Patient’s Responsibility to Participate in Decision Making and
Research” by Tinetti and Basch. One always thinks that the role of the patient
in medical research should be simply as the “guinea pig” or subject of the
research and that the creation and development of the research project is the
job of the research scientists and physicians. It is these professional folks
who are known to understand the science and the missing information that needs
to be discovered and they are the ones to be involved in deciding upon what and
how and to what ends a medical research study should be designed.
However, on thinking about this a bit further about how medical (also called
clinical) research is to be initiated, one should ask the question as to whose
primary benefit should the research be directed.  One could say that it is to
increase the pool of medical knowledge from which physicians can access in
order to treat all their patients. A more cynical answer would be that the
benefit can be self-serving and really provide a significant benefit to the
professional both in terms of satisfaction of personal inquisitiveness and, of
course, the opportunity to advance one’s professional career. The article, on
the other hand, stresses the importance of considering the patients themselves
as the beneficiaries of medical research and as such it should be the patients
themselves who should be involved in setting the basis for a study and involved
in establishing what should be the study’s goal. After all, it is the patients
who can provide input into what patients want to get out of the conclusion of
the research. This input could direct the research scientists toward finding
results which would be more acceptable and needed from the patient’s point of
Beyond the goal of the study, since the patients are the “guinea-pigs” it would
seem ethical to allow some patient autonomy in the details of the project to
have a say with regard to how they, as subjects, be utilized and more
comfortable with the project. It is important to remember that, in many aspects
of the study, there is a declared responsibility of the patient to strictly
follow the directions set by the researchers and continue their participation
since otherwise the study may be flawed or even lead to its abandonment.
Therefore, patient participation in a study should extend beyond being solely
the subjects to be experimented upon. As the title of the JAMA article suggests
beyond being the subject, shouldn’t patients in general be required to
participate in medical research? However, also as the JAMA article implies that
though there is general consensus about the responsibilities of patients to
request information from physicians if they don’t understand, participate in
decision about diagnosis and treatment options and agree to adhere to agreed-on
treatment program, “the responsibility of patients to participate in research
is less clear than their responsibility to participate in their own care.” One
argument that could be made for patient responsibility would be that “patients
have the duty to participate in research because everyone benefits from the
results and the no one should be a ‘free rider'”
Though, ideally, to achieve an effective goal of “patient-centered” healthcare
and decision-making, the JAMA article concludes that to reach that goal
requires that “patients let clinicians know their priorities, understand which
strategies are most likely to achieve their priorities and participate in
research which generates this evidence.”
I would be interested to read what my visitors think about the role of patients
to become a study research subject but also contribute to the development of
patient-centered goals for the study.  ..Maurice.

Graphic:  From via Google Images

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