I need to thank Gretchen Becker for
giving me this topic. While I doubt that I will see a lot of this
citizen medicine happen in my lifetime, I expect that my son and
daughter will experience this on a broad basis. Even though this is
being played up and a very few doctors are working to make this
happen, the mainstream medical community is still bickering about
allowing patient centered medicine and coming up with “less is
more” campaigns to confuse issues. State medical boards are also
attempting to prevent much of the forward progress of medicine by
opposing telemedicine and other innovative trends in medicine.
Diseases once thought to be monolithic
are now being broken into subgroups, sometimes even into entirely new
classes. While such novel classifications might be challenging to
physicians, increased access to data is enabling patients to play a
greater role in managing their care, often in ways that circumvent
traditional health care protocols. The recent $215 million Precision
Medicine Initiative established by the Obama administration marks a
clear recognition of this changing reality.
Harvard Medicine News (HMN)
recently spoke with Isaac
Kohane, inaugural chair of the new HMS
Department of Biomedical Informatics. Kohane
has long been at the forefront of innovation in this area. HMN
wanted to discuss the conference themes, in particular the
disruptive—and ultimately transformative—role that patients have
to play.
Kohane says what excites him most about
the emerging field of precision medicine is 'that it is precise.'
What that means to him is that it is going to be data-driven, both by
our individual characteristics, but also by the accumulation of such
characteristics across all the other patients who are like us.
Rather than an anecdotal personalization, through precision medicine
we have at least the promise of data-driven medicine, in the same
sense that Netflix and Amazon give data-driven recommendations. In
current medical practice, such data-driven behavior is largely an
aspiration only.
In speaking about patients as “leaders”
in precision medicine Kohane said, “In the end, no one is going
to care more about our loved ones than we do. That's as it should
be.” Furthermore, the rarer (and therefore the more precise)
someone's diagnosis, the more likely that that patient is going to be
more expert about their own condition, and current diagnostic and
therapeutic approaches, than the traditional care providers are.
That combination of passion and expertise allows patients to
influence the direction of research, influence how data is shared
among researchers and how data is shared among health care providers,
influence how legislation enabling precision medicine is written, and
influence the economics around the delivery of precision medicine.
Kohane continued that the medical
establishment has a lot on its plate. Most of what does not get done
is attributable to inertia, and only occasionally, to parochial
motivations. Regardless, patients are the ultimate customers of
these establishments, and the more vocal and the more clear they are
in their preferences; the more likely they are to overcome this
inertia. Moreover, forward-looking health care systems will figure
out how to enlist and empower these patients, to improve the overall
care process.
When asked how can we ensure that
patients’ private data remains private? Will this require
exorbitant costs, both in legal costs as well as in cyber-security
infrastructure?
Kohane answered, “First, we have
to acknowledge that what is currently private with respect to
research activity is often not private with regard to commercial
activity. In plain English, your data is already being routinely
shared and sold for commercial purposes. It's much more challenging
to obtain patient data for research. There's a longer story there
about distorted incentives, but suffice it to say that with a
patient's explicit consent and control, maintaining privacy and
control is not necessarily expensive or difficult—with correct
governance and correct large-scale implementation.”
I did not quote all of the information
as I feel that from what Kohane says is farsighted
and opens the dialogue for further
discussion.
No comments:
Post a Comment