For those of us that live and breathe health services research, the past two weeks of House and Senate appropriations committee markups give us a sense of déjà vu, frustration, and cause for reflection. The Agency for Healthcare Research and Quality (AHRQ) was once again placed on the chopping block in the fiscal year (FY) 2016 spending bill for the House of Representatives Labor, Health and Human Services, Education and Related Agencies Subcommittee, and the agency's budget was slashed by 35 percent in the Senate Subcommittee's bill.
We've heard this song before. In 1994, AHRQ (then the Agency for Health Care Policy and Research) suffered a near-death experience in retaliation to unpopular evidence. More recently, the agency was also proposed for 'termination' in the House's FY 2013 spending bill that, though released, was never considered by the subcommittee. We understand that subsequent House spending bills that weren't made public in FY 2014 and 2015 also included the same language we see today.
We know AHRQ's work is important--critical, in fact, when we consider the challenges facing health care. We witness preventable medical errors and unnecessary care that waste valuable resources (dollars and labor); observe the sciences being pitted against other sciences; see medical discoveries and effective advances that languish on paper or in laboratories never to reach patients or improve their health, withering away while others rediscover their findings; and continue to debate the best way to pay for care so that quality and value are enhanced.
The challenges are infinite. So why, at a time when we need to understand our health system most, is Congress proposing the abolishment of an agency that, at its core, is tasked with helping us address many of these challenges? Challenges that by policymakers' own admission, are top of mind?
Why, 20 years later, are we still struggling to defend the flagship agency for the field of health services research--the research that tells us what works, for whom, under what circumstances, and at what cost?
Like most things worth knowing, the answer is complicated, but has at least three main aspects:
1. Producers and Users of Health Services Research Need to Speak Up
First and foremost, Congress is proposing to cripple health services research and its lead agency because it can. There's an old saying in Washington: "If you're not at the table, you're on the table." AcademyHealth has heard directly from appropriators that the public outcry in the wake of recent markups is the first they have heard about the breadth and depth of support for AHRQ and the evidence, datasets, and tools it generates. Otherwise, no organizations other than AcademyHealth and through it the 'Friends of AHRQ' has consistently expressed support for AHRQ--and health services research more broadly--as a top funding priority on Capitol Hill. That silence creates a 'win-win' scenario for appropriators: keeping spending within the draconian, overall budget caps and, better yet, doing it on the back of an agency and scientific discipline that's clearly not on the public's or key stakeholders' radars. Appropriators are faced with impossible budgetary decisions; if they think they can cut an agency or programs to boost funding for more popular programs (e.g., basic science for the National Institutes of Health) and come out unscathed, they will. No harm, no foul.
The threat to programs has become all the more real under sequestration. Before the Budget Control Act's discretionary spending caps and later, sequestration, stakeholders could ease by, relying on pro forma, inflationary increases or, in the worst case scenario, piggybacking on the status quo of continuing resolutions. However, that mindset of complacency can no longer endure, and it's not enough to sit idly by. In the absence of continuous, proactive outreach, there will be very real consequences. The initial loud reaction to AHRQ's proposed elimination has taken appropriators by surprise. They had no idea so many folks thought AHRQ was relevant! After all, they never hear about it from individuals and organizations during the year.
Our hope is that those who have spoken out so far will continue to lend their voice to our advocacy efforts by joining AcademyHealth, becoming a member of our Advocacy Interest Group, writing blogs and editorials, and of course, contacting lawmakers and their staff in-person, by phone, by email, or on Twitter (#SaveAHRQ).
2. Health Services Research and a Lifelong Identity Crisis
A second reason is that as a field, health services research is relatively young, with a history going back roughly half a century. Since its emergence, the field has struggled to explain itself--what it is, what it does, why it is valuable, and how it has changed the trajectory of health care in this country for the better. And how we talk about ourselves is not helping.
It's not a simple story:
- Health services research is very big tent, encompassing the effectiveness, quality, costs, organization, management, funding, and delivery of health care.
- Our researchers often call the work they do something else: patient outcomes research, health policy research, quality improvement research, implementation research, public health research, and so on. A recent assessment by AcademyHealth found respondents using 34 different terms to describe what they do!
- Similarly, this field is often considered secondary. An individual may classify himself/herself as a public health researcher, a behavioral health researcher, or a health economist doing health services research.
- When cited in the media, health services research isn't referred to as health services research but rather research on X. It's there, but no one would know it.
- Health services research is competing against "curing cancer" and "curing Alzheimer's disease." Although that research is of the utmost importance and should not be discounted by any means, health services research has not found its punch line, so to speak. How do we, as a field, describe health services research in that same, to-the-point, kind of way?
Clearly we cannot continue this way--as we know the definition of insanity is doing the same thing over and over again and expecting different results. We (AHRQ, AcademyHealth, our members, and the field) must do better. And back to point one, once we know what to say we need to say it loud, proud, and year round!
3. Health Services Research Needs Stronger Narratives of Impact and Value
Finally, for health services research to be considered relevant in a world of competing priorities and limited resources, the field must provide specific and memorable examples of the field's or AHRQ's work (see here and here) to convey its mission and value. I often quip that "your data make you credible, but your stories make you memorable." Yet, we have collectively underinvested in systematically documenting the impact of health services research on costs, care and outcomes in ways that resonate with those who hold the purse strings.
In addition, and much more difficult to achieve, the field must determine how to fundamentally change how health services research is being discussed and how it's currently perceived.
American poet Ralph Hodgson once said, "Some things have to be believed in to be seen." Those are our marching orders: to make policymakers believe in AHRQ's work so that, moving forward, AHRQ (and health services research) will truly be seen and valued for its continuing contributions to health and health care in this country.