EvGen: A Shared Vision for the Future

Well, people have to put
aside a little bit what we have been doing for the
last many years and really be able to imagine a new
future that will be better for everyone. Where patients will really
benefit from the sharing of their information,
where physicians will get feedback immediately about
their patient and how they fit into other experience
and then where all of that information can be
combined to improve health. I am excited that we are
seeing momentum to build on the steps that have
already happened. But simultaneously, I
want to bring into the discussion a real
acknowledgment that rigorous evidence
isn’t easy to get. And if one has large
observational data sets, in fact, if you don’t know
exactly all the confounds, you can get the
wrong answer also. So we need rigor, we need
attention to detail and we need attention
to data quality. And some of the time we
are still going to need randomization which is
a very good method of reducing confounds
and bias. I think it is bringing
together the stakeholders, the leaders of government
agencies, manufacturers, physicians, patients,
etc. to really rationalize the way we use data to
improve the effectiveness and safety of medical
products and healthcare delivery in general. This type of research that
we are really focused on with EvGen, it will solve
many problems, but first and foremost for me it
will begin to solve what to do for the individual
patient, is best for them. What I find most exciting
about EvGen is its timeliness. It is we are at this
moment where there is so much data being created
and the idea that we start planning now on how we
can leverage it is just terrific. I find the concept of
potentially bridging many projects that are already
ongoing that have the ability to one, enhance
clinical trials, two optimize evidence that
will allow us to have information to provide
better services not only for healthcare systems,
but patients at large. What I hope we see in five
years is large healthcare systems coming together to
share information for the common good. That is what our patients
want and healthcare systems need to get
beyond both the technical barriers, but also some of
their traditional cultural barriers about
sharing information. How do I envision
the medical evidence generation landscape
in five or ten years? I think the first thing
is that at the point of clinical care, the care of
this person is informed by all of the people who had
similar characteristics who came before her and
her care is reinvested in the overall
system of care. That is what EvGen
is all about. The whole landscape for
this is moving very, very fast. And so I don’t know where
it is going to be in five years. But one thing is for sure,
there is going to be much more data, there is
going to be much more accessibility of the data. And if we don’t get things
like the interoperability right and the patient
centricity of this right, we are going to miss
an opportunity to do something very profound
to change the ability to treat patients for the
next 10, 20, 30 years. In order for
EvGen to rapidly advance, collaboration from
multiple stakeholders focused around what
patients need is most important. For the future of EvGen,
first we have to be honest in recognizing that there
isn’t a dichotomy between the research setting and
clinical practice setting. It is a continuum. And we have to get our
systems ready for that so that we can also learn
from what happens in the clinical practice setting. It’s a critical time right
now to move EvGen forward. Many people have the same
idea, they would like to see this happen. For it to happen, though,
we need to understand the business motivations. What is it that is keeping
people from sharing data, why is it that clinicians
don’t have enough time in the clinic to get consent
and to operate in a way that gives us answers to
critical questions for patients. And what can we do to give
patients confidence that the system will work in
their behalf and that their data will be
treated with respect and confidentiality.

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