Accountability. A fine sounding word but what does it mean, really? Accountability is “an obligation or willingness to accept responsibility, to account for one’s actions”. When talking about health, healthcare and biomedical research, the question is who is supposed to be accountable and for what?
When it comes to health, individuals are bombarded with “responsibility” messages telling them to eat right, exercise, get enough sleep, avoid dangerous activities, and of course, always use sunscreen! These well-intended messages about what is healthy seem to change daily–eggs are bad for us; no, eggs are good. Low fat is the answer to heart disease; no, low fat leads to obesity. Margarine is good, butter bad; no, margarine is…and so it goes. Some follow the advice as best they can and still get sick. Others ignore the dictates and stay well. So while it is easy to say that each of us is accountable for our health, actually being accountable is not easy at all!
As for healthcare, once one actually needs it, any sense of accountability seems to be lost in the sheer complexity of a process that is too often expensive, time-consuming, disruptive and difficult to manage.
Patients dutifully take off to their doctor, who is generally late, spends a few minutes assessing what is wrong, hands out a prescription or two, perhaps requests some lab work or expensive tests and makes a referral to a specialist. We may even receive a lecture on one of the current “good” behaviors to follow. We go to the specialists, who rarely seem to talk to one another or to our family doctor.
We often hear criticism of “the healthcare system”, but in truth, this criticism is unfair because in reality, we have do not have a system for healthcare—we have a process—one that as noted doesn’t work well for many of us. What does “accountability” or “responsibility” mean in this situation?
As patients, we take (or don’t) the medications as prescribed by the doctor. Which work or not. They might even have serious side effects–side effects that can kick off a medical emergency that is worse than the original problem. We undergo the inconclusive MRI or CT scan. And for many illnesses there are no good medications at all (why not?). In any case, then the bills start coming in….
So how do we fix this? Some say the answer lies in building a true system for improving and maintaining health in which every party has specific responsibilities and all work together to achieve our desired goals—proactive, preventative care, driven by data and value, in which incentives are aligned with outcomes, costs are lower, care more accessible, and patients are effective partners, not just consumers—in short, accountable care. And if prevention does not work, then provide beneficial humane care.
And what of biomedical research? What is its role? Biomedical research is an essential element of any effective healthcare system. In delivering care, we need to know not only what works and what doesn’t, but also how we can make things better. Here too accountability may best be served by building a true system. This includes the discovery and testing of new medical treatments and diagnostics—new drugs, medical devices, vaccines and biologics—all of which must be rigorously and systematically studied through clinical trials for safety and effectiveness. For researchers and the industry that supports them, responsibility also means patients must be partners in this process. In a word, Accountable Research TM.
The Alliance for Clinical Research Excellence and Safety (ACRES), a non-profit public interest organization, in partnership with Hearst Publishing, believes that a public blog focused on Accountable Research affords and opportunity for everyone to have a voice in the ongoing dialogue about accepting responsibility—and keeping our promises—in healthcare and health research. In the weeks ahead, ideas and opinions about health and research will be shared here, and we invite you to share yours—a major step toward realizing your own health accountability.
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