2012 EDUCATIONAL BOOK - American Society of Clinical Oncology

PHYSICIAN ENGAGEMENT IN ONLINE PATIENT COMMUNITIES
second-generation relatives to assess risk factors that may
be related to why people may be at risk of developing such
rare diseases. Another example is a small trial that focused
on the rare clinical problem of spontaneous coronary artery
dissection. This was conducted by investigators at the Mayo
Clinic and was able to enroll its target of 12 patients within
just one week of being granted institutional review board
approval. 9 Although a small and limited trial outside of
the cancer setting, it is clear that the partnership of engaged
medical professionals with a coordinated and motivated
online patient population can facilitate research otherwise
infeasible without Internet-based participation.
It is critical to emphasize that each of these novel mechanisms
of identifying appropriate trials for patients requires
the input and guidance of a patient’s primary oncologist to
provide context and guidance to review the range of options
and facilitate participation in an optimal choice, if one
exists. These network-furnished opportunities alter but do
not obviate the relationship between the patient and the
local oncologist.
Conclusions: Picking Up the Gauntlet
The Internet and related information technology has ushered
in disruptive changes in the practice of medicine. The
volume of new information has grown to a point where
individual physicians increasingly find themselves unable to
feasibly master the range of material required by any but
the most specialized clinics, especially with increasingly
clinic and paperwork demands. Most significantly, this information
is no longer exclusively available to physicians;
rather, it is now also available to motivated patients who
seek relevant content in hopes of better understanding their
condition and participating more actively in their own care
decisions. These trends are especially true in cancer care,
where the chronicity and often life-threatening nature of the
disease leads patients to be exceptionally motivated to learn
about a field that has become exponentially more complex
and yet also more mechanistic with this new era of molecular
oncology.
As the proportion of the general public seeking health care
information online grows steadily, the quality of the content
they encounter is a concerning variable. Although patientcentered
online communities often feature very knowledgeable
members of the lay public who have become extremely
sophisticated, such communities are also a potential source
for misinformation that can be detrimental to good care, or
at least will compete for patient attention with more accurate,
constructive educational material. The need for openminded
and expert professional input is critical despite the
fact that physicians have historically been wary about engaging
in such public dissemination of information by producing
vetted online content.
Although the investment of time and effort for such
activities is significant, the potential for practical benefits
cannot be overstated. Patients and caregivers will seek
assistance from online sources in greater numbers regardless
of whether health care professionals provide content
that is professionally reviewed for quality, accuracy, methodology,
fair balance, and reliability. The physician’s ability
to engage and largely direct the conversation, as well as
ensure the quality of online content, is likely to translate to
the difference between whether the newly defined relationship
between patient and physician will become more oppositional
or more collaborative. As we move toward an era of
bidirectional rather than unidirectional flow of health care
information, physicians have the potential to leverage the
efficiency of digital content to convey the most current
expert information broadly, opening up the possibilities of
new strategies for molecularly-guided clinical research that
will capitalize on the ability of the Internet to connect small
groups of geographically distributed people, along with the
motivation and communication within patient online communities.
The role of the oncologist, as for nearly all other physicians,
is being altered in real time, and the opportunity (if
not responsibility) to provide high-quality, vetted medical
information remains crucial. There are enough examples
now of the realized potential of these efforts that more
physicians should feel compelled to engage in the professional
discourse with patients online.
Importantly, no public online source will have the details
of a patient’s case that can inform care decisions, and even
knowledgeable sources may offer a range of perspectives on
questions with no absolute correct answer. It is therefore
critical to underscore that, even as the role of serving as a
patient’s primary oncologist evolves to increasingly integrate
a plurality of sources of knowledge, it remains the
pivotal mechanism for vetting and prioritizing content and
its applicability for a particular patient’s context.
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