This is the 17th 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.
Marge Ginsburg: I am a nurse by training with a background in administering community-based geriatric programs. When we moved from San Francisco to Sacramento in 1990, I stumbled across the 'health decisions' movement ' small nonprofit organizations committed to bringing the public voice to health care policy and practice. While I had loved my previous work, health decisions instantly felt like the perfect fit for me. In 1994, with several local funders and a committed board of directors, we formed Sacramento Healthcare Decisions. In 2009, we changed our name to Center for Healthcare Decisions (CHCD) since our work had long since expanded from the Sacramento region alone to state and national projects.
The core of CHCD's work is civic engagement. As a health care professional, I had often wondered how the average person could fathom the workings of a system that they had so little knowledge of, yet that could have such a major influence on their lives. So the idea of bringing people together and asking them to think and talk about some of today's significant health policy issues was very appealing to me. These discussion groups are not focus groups, because we ask participants to help address a difficult problem through a process of deliberation, not simply give their reactions. We also ask individuals to discuss health care problems from the perspective of 'citizens,' whose role is to weight priorities and trade-offs in terms of 'what is in the best interest of all of us.'
At the beginning, end-of-life care was our primary work, and we were heavily engaged in local, state and national efforts. For the past ten years, CHCD has mainly focused on the increasing cost of health care and what this means in terms of individual and societal priorities.
Gruman: Where do you see comparative effectiveness research (CER) fitting in the effort to improve the effectiveness of health care?
Marge Ginsburg: In many ways, this country is a victim of its own successes. While medical research and technology has brought phenomenal benefits to many patients, we have grown indiscriminate in when and how we adopt new medical miracles. The medical profession grabs hold of new technologies very quickly, but if they are proven ineffective or harmful, doctors are slow to drop them. CER is desperately needed ' it is unfair to patients who assume that whatever their doctor recommends is the best choice.
I think there are two main issues here: 1) making sure that the results of CER are well-communicated to the medical profession and the public at-large, and 2) finding a way to give some backbone to CER results. Many physicians are slow to change, and I worry that CER results are left languishing on a shelf. Although educated and engaged patients can be strong advocates for themselves, not all patients are able to do this. Relying solely on the best intentions of their doctor may not get a patient the most useful treatment. A recent article in JAMA is titled Clinicians Remain Reluctant to Allow Negative Findings to Influence Practice (Oct. 3, 2012 ' vol.308, No. 13). This is not good news.
Some stakeholders hold patients accountable for the excessive use of high-tech treatments, that doctors must appease patients who believe that more treatment is better, pricey means high quality and newer is always improved. Many people, in fact, do believe this because this is what they have been taught for years by the medical industry. Advertising does work. So we shouldn't be surprised that the public often has unrealistic expectations or insists on the robotic surgery that is advertised daily but doesn't have the evidence behind it. ' Somehow this cycle needs to be changed. Burgeoning medical technology is probably the key cost driver in health care, but we don't take steps to approach it rationally. It is very easy to introduce a new technology into medical practice and very, very difficult to take it out.
The problem ' increasingly apparent to everyone including the lay public ' is that we cannot afford to continue living this extravagant medical lifestyle. Patients are adjusting where they can; as their cost sharing has increased, they are more willing to try generics. But it's one thing to do this for a statin and quite another for chemotherapy. Who can be logical about something that offers a 3 percent chance of saving your life?
It is an issue like this ' should insurance pay for costly treatment that has a very small chance of working? - that needs the input of an informed citizenry. Though there is not necessarily a yes/no answer to questions like this one, they represent a major tension in health care today: are we too cavalier in how evidence is used in clinical and coverage decisions?
Gruman: Tell me how your organization views the relationship between CER and patient-centered outcomes research (PCOR).
Marge Ginsburg: The general public needs all the help it can get about research, how it works and why it keeps changing conclusions. If research contradicts what people have been taught or what their doctor says, they tend to ignore it. My hope is that PCOR will 'humanize' CER. In bringing patient-centeredness into the equation, perhaps this subject will be less arcane and more accessible to the average person. But it's a long haul. CER is an unknown concept to most; adding the influence of patient-centeredness may be helpful to bring the public's perspective. But I'm not sure it is going to generate a whole new level of public discourse.
Gruman: Can you give me an example of how your constituents have been affected by CER?
Marge Ginsburg: In some recent discussion groups, we found that individuals rarely know what CER is and have few examples of how it has affected them or others. Although they are aware that some hospitals and doctors are better than others, they seem far less aware about the variation in clinical effectiveness of current treatments. They often speak of the uniqueness of each patient and the importance of tailoring treatment to the individual. For the most part, people rely on their trusted doctor to provide them with clinical direction.
Although scientific literacy isn't that great in the U.S. today, people are, nevertheless, getting savvier about their own medical research, particularly by going online. People trust their doctors, but increasingly it is 'trust but verify.' CER would be particularly helpful if it convinced more of the public to use the internet for effectiveness research and provided accurate and accessible websites.
Gruman: Some professionals believe that patients are opposed to comparative effectiveness research. Do you think this is accurate?
Marge Ginsburg: The public may ask 'what if it contradicts what my doctor and I think is beneficial for me?' We've found the public is concerned about research trumping their own experiences, but they aren't opposed to the idea of doing CER.
People are worried that the decision about their treatment will be taken away from them and their doctors. If they think the one thing that is beneficial for them will be taken off the market or not paid for, their guard goes up. The individualism of each person is central to their view of medical treatment.
Gruman: What are your fears and hopes for CER?
Marge Ginsburg: We know that societal resources are used for interventions that are ineffective and harmful. We should do CER legitimately, make sure results are disseminated widely and that they are easy for doctors and patients to find and track. I don't know if that will be enough, however, to make a difference in the practice of medicine. I worry that it will take far more than voluntary actions of physicians in order for CER to be applied in the way it is intended.