Sort by: Show All | HBNS Articles only | Blog Posts only | Resources Only | Features Only
Order by: Newest First | Oldest First
John Burke is a respected patient advocate who has participated in more than 30 clinical trials and has been employed as a health care policy expert for over 20 years. This is the first in a series of interviews with patients and patient group advocates about their experiences with and attitudes toward comparative effectiveness research.
Judy Norsigian is one of the founders of Our Bodies Ourselves (OBOS), a nonprofit public interest organization practicing women's health education, advocacy and consulting, and has served as its executive director since 2001. This is the second in a series of interviews with patient and consumer group leaders about their experiences with and attitudes toward comparative effectiveness research.
Gail Hunt is president and CEO of the National Alliance for Caregiving and serves on the Board of Commissioners for the Center for Aging Service Technology, the Governing Board of the Patient-Centered Outcomes Research Institute (PCORI), and the CFAH Board of Trustees. 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.
When Consumer Reports (CR)
first saw the rising national emphasis on Comparative Effectiveness Research (CER) three years ago, we were pleased: CER is what CR
does. However, when it comes to health, we realized how difficult it is to do CER: CR
would need to rely on good research done by others.
As a patient advocate, it's always good to know what the best treatment options are for our patients. As we continue to see so much fraud in research, there is mistrust about validity of data and the research itself relative to particular at-risk communities.
When you look at what can be done to save Medicare with this growing aging population, what do you do? One of most important things to do is to quit paying for things that don't work or don't work very well.
Despite availability, evidence doesn't always make its way into practice. If we could implement what we know now about safe and effective maternity care, we would see rapid improvements in the quality, outcomes, and value of care for women and babies.
Easter Seals sees 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 that CER will not prescribe the treatment.
We're trying to figure out if CER is just more of the same. Health policy has a love affair with old wine in new bottles, that is, rebranding old solutions with new acronyms. Because patient-centered care and engagement are fashionable at the moment, is PCOR merely a way to dress up CER to be more exciting and attractive (or palatable)?
It would be nice to know if a treatment is totally worthless or that there are truly horrible side effects to a treatment or that a treatment really won't help slow the disease or relieve the symptom it's aimed at.
Patients are not opposed to comparative effectiveness research. I think they understand its value to health care decision-making. But physician-scientists and policymakers rightly perceive the inherent tension between personalized medicine and CER.
Epilepsy is a complex disease. An optimal quality of life and seizure control for the person with epilepsy – so that they can be a fully productive member of society – is our goal. Our main concern about CER and our constituents is that one treatment may provide a high quality of life with seizure control and few side effects for many but not for all patients.
We believe that CER can be a valuable strategy to improve health care'?¦We are concerned, however, that older adults have often been excluded from clinical trials of drugs, medical devices and procedures.
When we started focusing on CER, the big concern was the head-to-head trials of drugs and devices and the naive application of their findings to insurance reimbursement policies. Our ultimate fear was that access to medications would be restricted.
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.
CER is particularly important in the age of personalized approaches to making decisions about cancer treatments and things like genomic testing. Doctors and patients alike are realizing that there are inadequate studies to assess the clinical utility of new interventions.
In many ways, this country is a victim of its own successes. While medical research and technology has brought phenomenal benefit to many patients, we have grown indiscriminate in when and how we adopt new medical miracles.
Comparative effectiveness research will be transformational if done properly. The critical thing is that it be done without built-in bias.
As a community, our focus is on the discovery of disease-modifying treatments. This is the burning desire of everyone in the [Huntington’s disease] community.
I got involved in patient safety many years ago after I lost my mom in early 1995 due to medical errors. While my mom was in a coma for seven weeks, I met other families in ICU. Many of them – the majority – had unanswered questions.
To me it’s obvious that Comparative Effectiveness Research (CER) is a good way to get to meaningful patient outcomes. It compares real things that will make a difference. Right now we have efficacy without effect. In my field we are worried about drug-herb interactions; what about drug-drug interactions? I’m looking forward to CER really drilling down to what works for patients in a meaningful way.
There is a large disparity of information across the medical world. If you consult 6 doctors, you’ll likely get 6 opinions about how to treat your cancer. And 5-year survivals may vary as much as 50%. This is inexcusable.
There are 30,000 Americans alive today with symptoms of HD, and an additional 200,000 are at risk...Generally, we see CER as an important priority to inform clinician decision making.