Health services research must fight for its future

Recognising the value of researching health service use is a universal challenge. Dr Lisa Simpson explains how the US is grappling with funding cuts to this crucial area of research.

The beginning of the US summer began with a troubling note for health services researchers:  the US House of Representative’s sub-committee with oversight for health research funding proposed eliminating the lead federal agency for health services research: the Agency for Healthcare Research and Quality (AHRQ).  Shortly thereafter, the US Senate Appropriations Committee passed its bill proposing the Agency be cut by 35% from its current budget of $US440 million – a deep cut resulting from the woefully inadequate levels of funds available after the Government budgeted for defence and social insurance programs.

But this legislation wasn’t without winners, at least some of which come at AHRQ’s expense. The National Institutes of Health (NIH), the US biomedical research behemoth, received a much needed $US2 billion increase. As the Senate Subcommittee Chairman Roy Blunt highlighted in a recent op-ed in political news website The Hill, “Now is the time to prioritise biomedical research to increase critical life-saving medical treatments and high-quality cures available to all Americans”.

Like health services research, biomedical research is a critical function of the federal government. There’s no denying that investments in NIH help discover disease cures and strengthen the economy. The House Committee Chairman noted: “NIH-funded biomedical research is the catalyst behind many of the advances that are now helping Americans live longer and healthier lives.”

Fuel to keep the fire burning

But, if biomedical research is the “catalyst,” AHRQ’s health services research is the fuel to keep the fire burning. Without evidence about how to optimally deliver new cures to patients – including how to incentivise and reward patients and clinicians for using best evidence ‒or how to make the best use of the cures already available on the market, NIH’s medical discoveries will fall short of their promise to patients. These two agencies have important, complementary, and mutually beneficial functions.

AHRQ’s unique role in collecting data and funding health services research on the performance of the healthcare system helps doctors and health systems develop and test innovations on how to deliver high quality care in less costly and more effective ways. The US spends $3 trillion annually on health care – the largest share of which are federal purchases through Medicare (insurance for the elderly and long-term disabled), Medicaid (insurance for the poor), the Federal Employees Health Benefits Plan, insurance exchanges, TRICARE (the US Miltary health care program), and veterans’ health care.

Health services research tells us as much as 30% of this spending is wasted on inappropriate, unnecessary, and sometimes even harmful care. Already, our nation spends less than one-tenth of one cent of health spending on health services research to determine how to do better: to deliver the best possible care, at the greatest value, with the best outcomes. Under the Senate’s spending bill, we’d spend even less. With health care spending continuing to rise, can our nation really afford the short-term gains afforded by the AHRQ cuts?

Chairman Blunt asserted, “This is a time of promise in medical research and the United States should be at the forefront of this era. To do so, we must commit to paying for the research to do it.”  AcademyHealth and the community we represent couldn’t agree more. But our nation needs to invest in the full continuum of health research–basic, clinical, prevention, health services, and translational research–to get the best return on NIH investments. AHRQ is a critical pillar of America’s health research enterprise, and worthy of fully restored funding in the 2016 fiscal year.

A sense of deja vu

For those of us that live and breathe health services research, this situation gives us a sense of déjà vu, frustration, and cause for reflection. In fact, 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  politically  unpopular evidence about the management of acute back pain. 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 the US Congress proposing the abolition  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, the US 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 the recent legislative proposals is the first they had heard about the breadth and depth of support for AHRQ and the evidence, datasets, and tools it generates. 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 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 organisations during the year.

2. Health services research suffers from 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, organisation, 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, political scientist, sociologist, 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 [topic]”. 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.

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, we must make sure that we convey both the mission and the value of the work we are doing by providing specific and memorable examples of that research. 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.

We at AcademyHealth would love to hear from our Australian colleagues about how they have tackled similar challenges.  What strategies do you use? What success stories do you tell and how did you find them? I am sure we can help each other! Comment below or email: lisa.simpson@academyhealth.org