This interview is the eighth in a series 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.
Mary Andrus: Easter Seals is the leading non-profit provider of services for individuals with autism, developmental disabilities, physical and mental disabilities, and other special needs. We have 72 affiliates nationwide, each one unique. Some affiliates provide early education and care services to young children or employment services for people with disabilities, while others provide adult day services or a combination of these and a wide range of other services.
My job as assistant vice president for government relations is to try to consider the range of needs of people who live with disabilities and chronic conditions and work with Congress and the administration to advocate for change that supports their lives. Specific to the topic of comparative effectiveness research, Easter Seals is concerned with how different ways of doing research might broaden knowledge and affect these individuals and their families and communities.
Because of the diversity of the people who utilize Easter Seals services, we are less connected to research on a specific disease or condition and the subsequent research outcomes. We'd like to see our role as working for the benefit of well-run, well-disseminated research.
Gruman: Where do you see comparative effectiveness research (CER) fitting in the effort to improve the effectiveness of health care?
Mary Andrus: We see CER as a real opportunity for good information about treatment choices. Wanting to always be person-centered, we hope CER can inform the choices of individuals and families made in consultation with their providers ' but not prescribe the treatment.
Gruman: ' Tell me how Easter Seals views the relationship between CER and patient-centered outcomes research (PCORI).
Mary Andrus: We are working to get to know the staff and work of the Patient Centered Outcomes Research Institute (PCORI). We agree strongly with the idea that patients' voices must help shape the development of CER studies, an idea PCORI has advanced. The patient's experience can add important knowledge to what topics researchers choose to study, how they design their projects and the outcomes they seek. As the people who have the best opportunity to be affected by the outcomes of the research, we want to see patients involved as early and often as possible, particularly with the work that is sponsored by PCORI.
Gruman: Can you give me an example of how your constituents have been affected by CER?
Mary Andrus: At this time, I am not aware of specific CER efforts that directly affect the people who utilize Easter Seals for services.
Gruman: How do you see the increased attention to CER affecting the care your constituents will receive in the future?
Mary Andrus: We want to build in as many safeguards as possible to make sure that research outcomes are used to inform patients and providers about their choices, but not to force people down those paths so they have to use a particular treatment. We are concerned that evidence produced by CER may be used to limit access to treatments that work for some people.
Individuals respond in unique ways. People with epilepsy may provide a good example. For many people, moving from a brand drug to a generic drug can cause difficulties because individuals may react to the physical differences in the make-up of the tablets.
We have some anxiety about how CER outcomes that say, 'This treatment works better than that one,' may be utilized. Could it prompt payers to say 'Then, we will only pay for this one'?
Gruman: Some professionals believe that patients are opposed to comparative effectiveness research. Do you think this is accurate?
Mary Andrus: I haven't had any negative pushback from the people who come to the Easter Seals affiliates. What I don't know is whether they have had a chance to learn much about CER. For many people who come in to an Easter Seals facility, the organization's role in the development of CER may not be their primary concern. People want to receive the services they need and live their lives.
While we are certainly concerned about the quality of the research, reimbursement rates are a high priority for Easter Seals. In the case of autism treatment, for example, if there was a new way of treating individuals with autism and CER showed it worked well, our concern would quickly focus on whether it can be covered by Medicaid and private insurance so we can provide this to the people seeking care through our affiliates.
Gruman: What are your fears and hopes for CER?
Mary Andrus: I believe CER offers tremendous opportunities to improve the effectiveness of health care. Easter Seals has been supportive, through the legislative process, of finding ways to do research differently than NIH and AHRQ have been able to do thus far. We see requiring patient involvement in CER, as PCORI is working to do, as a positive turn. PCORI's plan to have patient advocacy groups and organizations like Easter Seals involved in research dissemination are also a positive development.
We want to make sure that all doors remain open. New research doesn't mean that you have the 'truth' for every patient, under all circumstances. We embrace CER as an opportunity for information but we want to make sure that in building the structure of CER through PCORI, the results will inform but not prescribe a path for individual patients. We want to gain choices, not limit options for treatment or reimbursement.
More CER Interviews by Jessie Gruman