2012 EDUCATIONAL BOOK - American Society of Clinical Oncology

PHYSICIAN ENGAGEMENT IN ONLINE PATIENT COMMUNITIES
Fig. 2. Top concerns of physicians regarding interaction with patients online (respondents choose up to three). 4
alternative, “pulled” content—patient solicitation of answers
on an interactive online community or participation
in discussions via Facebook or Twitter—offer the benefit of
great appeal to the lay audience because of potentially more
individualized and, therefore, valuable answers. These efforts
create challenges, however, by being more time consuming
and not scalable like pushed content. In addition,
pulled, interactive content that involves individualized
case discussions could potentially entail an implied medical
recommendation in the absence of broad disclaimers and
careful wording. Additionally, there is a risk of oversimplification
because the optimal practice of medicine always
depends on the totality of details and accuracy of the
information. In the most egregious example, patients with a
mistaken diagnosis might not even have the disease that
they think they have.
Patients can clearly benefit from becoming far more informed
about appropriate treatment options and may learn
about standard or clinical research-based options about
which their own physician might not be aware. They can
also be comforted by the ability to play an active role in
achieving a consensus about the optimal treatment for a
complex situation. However, benefits are also readily available
for physicians who are willing to invest the time to
impart their knowledge into global online discussions. Aside
from the very substantial intrinsic value of enabling more
patients to participate directly in their own care while
armed with vetted information, physicians who engage with
patients online may need to spend less time covering these
same topics repeatedly in individual discussions, may be
Table 1. Physicians Remain Most Valued Source of
Health Information 5
Who is more helpful when you need ...
Professional
sources, e.g.,
MD and RN (%)
Fellow patients,
friends, and
family (%)
Both
equally
(%)
An accurate medical diagnosis 91 5 2
Information about prescription drugs 85 9 3
Information about alternative treatments 63 24 5
A recommendation for a doctor or specialist 62 27 6
A recommendation for a hospital or other
medical facility
62 27 6
better trusted by their patients, and may attract more new
patients based on their online outreach.
The medical community can potentially curate highquality
content, such as by creating an online resource akin
to a Wikipedia or Khan Academy of medical information
accessible to physicians and to the lay public alike. In
many ways, this was the impetus for ASCO to develop the
professionally vetted Web resource CancerNet (www.cancer.
net) to facilitate these new professional roles and responsibilities
with the public. Effective professional activities in
this regard will engender two critical and increasingly
necessary fundamental changes. First, physicians will no
longer need to hold an unmanageable capacity of specialized
knowledge but can work with patients to access and interpret
the best data to create an optimal management strategy.
By necessity, this change will also be accompanied by
an increased physician acceptance of outside sources of new
information as relevant and potentially valid. Secondly,
rather than have the same content recreated and recapitulated
for thousands of patients thousands of times individually,
this information can be shared communally, freeing
time otherwise spent in reduplicated efforts.
One example of successful engagement of multiple oncologists
providing timely content to a patient and caregiver
population is provided by the Global Resource for Advancing
Cancer Education (GRACE, CancerGRACE.org). GRACE is
a nonprofit organization comprised primarily of an expert
physician-mediated online forum that started with a focus
on lung cancer and recently expanding into other cancer
subtypes, in which one of the authors (Dr. West) along with
other oncology experts distill the latest trial results and
summarize current best practices, along with personal perspectives,
in accessible language and multiple formats.
These formats include blog posts, video and audio podcasts,
and a very popular interactive discussion forum in which
patients and caregivers can ask experts, and each other,
questions about the best current treatments and new research
concepts just emerging. Although requiring time and
effort to develop and maintain, this resource offering both
pushed and interactive content efficiently delivers expertquality
information, enabling tens of thousands of highly
motivated people every month from all over the world to
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