This is the fifteenth in a series of interviews between CFAH President and Founder Jessie Gruman and patient and consumer group leaders about their experiences with and attitudes toward comparative effectiveness research (CER).
Gruman: Tell me about yourself and your organization.
Joyce Dubow: AARP is a nonprofit, nonpartisan organization with a membership of more than 37 million that helps people 50+ have independence, choice and control in ways that are beneficial to them and society. We've had a long-standing commitment to assuring financial and health security for individuals and their families and are working actively to make sure that people have access to health care that is high-quality, safe and affordable.
I have worked at AARP for over 20 years and have a broad portfolio that allows me to focus on ways to reform health care, including quality, public reporting, decision support, emerging models of care, and the like. I have the opportunity to work with our lead public policy volunteers to support the development of positions that benefit people 50 and over and that inform AARP's advocacy work. Exposure to their perspectives and experiences is enormously useful and important in my work. Considering their views and those of our members helps be to keep in mind why we are all working so hard to transform the health care system.
Gruman: Where do you see comparative effectiveness research (CER) fitting in the effort to improve the effectiveness of health care?
Joyce Dubow: CER is a fundamental component of the health system infrastructure. We need good evidence to undergird virtually all strategies to reform health care delivery. For example, evidence should inform the development of practice guidelines that, in turn, inform clinician and patient decisions. Evidence should shed light on the risks and benefits of specific interventions. Scientific evidence should also be the basis of tools used to measure performance and also incentive programs aimed at encouraging health providers to improve their care. Although we don't have precise estimates of how much medical care is actually based on sound evidence, experts tell us that, now, not more than half of all care is grounded in good science. Clearly, we need to do better if we want people to have high quality care that is provided in a way that is safe and makes the best use of scarce health care resources. CER that is relevant, timely and rigorous is fundamental to achieving these objectives.
Gruman: Tell me how AARP views the relationship between CER and patient-centered outcomes research (PCOR).
Joyce Dubow: If we are to achieve a health care system that places the needs, preferences, and circumstances of patients first, we need answers to questions that are important to them and their caregivers and the health professionals who are providing care. ' Given the dearth of good evidence, a patient-centered research agenda needs to be broad to fill in the large knowledge gaps. We need to consider not only how to best treat particular conditions, but also how to provide those services, how to communicate with and engage individuals so that they will be able to manage their own conditions and care, and how to provide care most effectively and efficiently.
PCOR is rightly focusing on person-centered outcomes research, but I don't think everyone shares a common definition of what this means. From my perspective, since people are the end-users of health care, everything that happens to them, about them, and for them in their health care 'experience' needs to be 'person-centered' ' which means the research needs to consider the consequences and outcomes for specific individuals. The research needs to be relevant to multiple audiences, but a broad set of patient perspectives needs to be embedded in the research questions so we'll know to whom and under what circumstances the findings apply in order to individualize care. For too long, we've ignored important population groups, and as a result, we have large gaps in our knowledge of how to address the needs of women, very old people, and those who are racial and ethnic minorities.
Gruman: Can you give me an example of how your constituents have been affected by CER?
Joyce Dubow: AARP advocates on issues of importance to people who are 50 and older. We were a strong supporter of the CER provisions in the HITECH legislation and the ACA because we saw the conduct of objective research that would help expand the evidence base as an essential component of health care reform ' a critical issue for our members. We worked with many, diverse stakeholder groups toward this end to ensure that the work of the newly formed entity (PCORI) would be person-focused, relevant, methodologically rigorous and transparent. But there are other ways our members benefit from CER more directly. For example, in deciding to remove cost-sharing charges for preventive services that the U.S. Preventive Task Force designates with an 'A' or 'B' rating, Congress relied on an entity that bases its recommendations on evidence. For people on Medicare, a potential barrier to receiving evidence-based services was removed by eliminating cost-sharing for these services.
Gruman: How do you see the increased attention to CER affecting the care your constituents will receive in the future?
Joyce Dubow: More decisions that are based on sound scientific evidence can only have a positive effect on health care. Just consider Beth McGlynn's article in the NEJM in 2003 reporting that people get only half of a set of specific evidence-based services. Without that knowledge, she would have been unable to identify where we need to improve. CER can provide the evidence to support our ability to assess performance so that we can focus attention on areas needing improvement. We need to be able to use our resources wisely: what works, what doesn't. Affordability of health care is a major issue for our members. It is in no one's interest to waste money. Good evidence can help focus our energies and our resources. But we also need to be sure that the evidence is applied correctly and not misconstrued so that it becomes a convenient excuse to deny care.
Gruman: Some professionals believe that patients are opposed to comparative effectiveness research. Do you think this is accurate?
Joyce Dubow: Some people may oppose CER because they worry that they will be deprived of care and services that they need. Unfortunately, the public is confused about what CER is. Raising people's anxiety about the prospect of 'rationing' is not productive and distorts the purposes of CER. We need to be sure the conversation is accurate and fairly represents what CER is. People need to understand they could make better decisions and get better care if there was evidence that they and their doctors could use to make decisions. People need to understand the value that CER brings to decision making. People's confidence in the use of CER will grow if they see examples of how better evidence helps them personally.
Gruman: What are your fears and hopes for CER?
Joyce Dubow: My fear is that in the name of budget cutting, we may not realize the value CER can bring to health care improvement. This would be short-sighted and costly in human and financial terms. My hope is that we will see growing investment in CER, a vast increase in care that is based on good, solid evidence, and that we find ways to share and communicate this information widely. My hope is that better evidence will help us retool the delivery of care so that people's needs drive what happens in the system. I choose to be optimistic that my hopes and not my fears will be realized.
More CER Interviews by Jessie Gruman