Last week, I was at a meeting on how to determine the value
of healthcare (a difficult topic) and heard a comment that the group’s
deliverables should not be simply “patient-centered” but instead should be “patient-driven.” This statement perfectly echoes the changing
world of patient advocacy and patient engagement. More emphasis is being placed on patients and
their experiences and many people are looking at how to bring about this change
in healthcare as well as bringing the patient into science and research.
In 2010, the Patient Centered
Outcomes Research Institute (PCORI) was formed and started giving out large
research grants--but only if you have a patient-centered project and team. Since then, I have seen researchers pay a lot
more attention to incorporating not only patient advocacy organizations but the
patients themselves into designing and carrying out studies. Increasingly, patients are being asked to
comment both on specific research studies and on broader policy issues. This trend towards patient engagement has
become so sweeping that a new program called “The
Science of Patient Input” was just announced in June by Faster Cures, an
action tank determined to remove barriers to medical progress. The concept of incorporating patients into
research is here, and it’s here to stay.
But there’s still something missing. Educated patients are moving the needle
forward towards making the system patient-centric by giving feedback about
their experiences and providing input on clinical trials, research studies, and
proposed law-making. But what about the
rest of us? What about me? Thankfully, I’m
actually pretty healthy. So what can I
do? Or my brother, who’s in finance and doesn’t know anything about medicine, how
can he drive research?
This is where SHARE For
Cures comes in. SHARE For Cures wants
to change “patient-driven” to “people-driven.”
Anyone, everyone, everyday
people. We want everyone to be able to
choose to share their health data to move medical research forward. Clinical trials tend to be on a small group
of individuals that meet specific eligibility criteria; however, many
researchers and drug developers are interested in effects on “real-world”
people. We are the real world
people. Whether sick or healthy, our
health and wellness data can make a difference.
Check us out, follow us, and sign up to be an early adopter. Learn how you
can help power research.
