This is the third 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: As a leader in health care, what are your greatest concerns about Comparative Effectiveness Research (CER)?
Gail Hunt: I think that the most common missing component in CER is the involvement of patients and caregivers. The caregiver especially is often left out of decision making, even though they are often overseeing adherence to treatments. Focus on patient-centered CER offers the greatest potential for patients, caregivers and clinicians. The more patient-centered CER is the more value it brings.
Caregivers are usually left out of the decision making process that is supposed to take place between doctors and patients. The issue for caregivers is to be recognized as part of the triad with doctors and patients. Think about the parents of a young child with Type 1 diabetes or adult children caring for a parent with Alzheimer's. The family caregiver plays an important role in planning and administering treatment, and of course, the extent to which patients adhere to treatment recommendations. Family caregivers really need to be at the table for discussions about the results of CER relevant to their loved one's care.
Gruman: Tell me about your particular concern and interest in caregivers.
Gail Hunt: I founded the National Alliance for Caregiving 16 years ago with five colleagues. We identified a need for a credible caregiver organization to conduct and disseminate research that speaks to policy. The Alliance is a coalition of 45 national organizations that have come together around family caregiving issues.
Gruman: How did you become interested in CER? And where do you think CER fits in the effort to improve the effectiveness of health care?
Gail Hunt: Three years ago I began to read about the Patient Centered Outcomes Research Institute (PCORI), and as part of that reading, I learned more about CER. Then I became a member of the Board of Governors of PCORI and am now pretty immersed in it.
CER compares treatments, surgery, medications and devices against one another or against 'watchful waiting' (doing nothing). The goal should be to support research that produces outcomes that are meaningful to patients and can help them, their family, their caregivers and their clinicians when they make decisions about their treatments. Conducting CER in a patient-centered way is what PCORI is all about.
I recall the time when I had knee replacement surgery in 2001; I don't think the surgeon talked to me in advance about the percentage of people for whom this surgery is successful. I would have done it anyway; I was the one pushing for it. But now I know there are different kinds of artificial knees. My insurance company just covered one of them. I didn't have a choice.
Gruman: Do you distinguish CER from patient-centered outcomes research (PCOR)? How are they related?
Gail Hunt: The only distinction is that PCOR is specifically patient centered, which means involving patients not just as a part of the sample for research but in setting priorities for what studies should be done, reviewing proposals, being on research teams and helping disseminate results to the patient level.
I see PCOR as also looking at patient outcomes not only though self-reported outcomes but also addressing what patients want to know about the possible results of a treatment.
Gruman: Do you see the increased attention to CER affecting the care you will receive in the future?
Gail Hunt: I think CER will move us ahead in quantifying some of the downsides as well as the upsides of different treatments. 'You could have this surgery but it only has a 50 percent chance of success; here are possible side effects.' Or, 'There is a 20 percent chance that your disease will be slowed by using this medication.' Patients, caregivers and clinicians should have answers to their questions about all the patient's options. They need to know about efficacy and risks of side effects so they can think about which therapy is best for them. This information should be the basis of family discussions with doctors. I don't think this is the case now.
Gruman: Some researchers and professionals believe that patient groups are opposed to comparative effectiveness research. What do you think is behind this view?
Gail Hunt: People have been concerned that CER data would be used by insurance companies to limit options on the basis of cost/benefit considerations, that their options would be narrowed and that the insurer would only pay for two options instead of six. For individual patients, they might need one of the disallowed options. They fear this wouldn't be allowed, not covered by their insurance.
I think the answer to this is PCOR. In PCOR you have to take into account the views of individual patients. For example, look at the questions, 'Does what worked for a middle aged black lady, work for the 16 year-old white boy? What differences do we need to take into account when prescribing treatment?"
I see CER generally as looking comprehensively at the options people have and that insurance companies are going to look at data about the options of surgery, medication, devices and so on.
I don't really know, though. I have the average person's distrust of insurance companies. But I think it will be a long while before CER is used by insurers to cut back on patients' options. The aim is to increase options but let people know risks and benefits. I don't see Medicare cutting back on services unless it's something that completely doesn't work.
Gruman: What do you think the public understands about comparative effectiveness research generally?
Gail Hunt: I don't think there has been enough information about CER in the media for the public to understand or even know about it.
I don't believe most patient groups know much about CER either, except maybe in the cancer community. Other patient groups aren't tuned into CER research results. Part of this is that no one has bothered to involve them or invite them to participate.
More CER Interviews by Jessie Gruman