Jordan Green, National Alliance for Caregiving
On April 3, 2009, public testimony on comparative effectiveness
research was given at a meeting of the National Advisory Council
for Healthcare Research and Quality. The testimony represents
the views of the presenter and not necessarily those of the Agency
for Healthcare Research and Quality (AHRQ) or the Department
of Health and Human Services (HHS).
The Council provides advice and recommendations to the Director,
AHRQ, and to the Secretary, HHS, on priorities for a national
health services research agenda.
Policy on Comparative Effectiveness Research
The National Alliance for Caregiving believes that for a comparative effectiveness program to be successful, it cannot be used as a "tool" to simply ration health care. It must improve patient outcomes, and include the front-line defenders in chronic care coordination and management--the family caregivers
Together with patients and healthcare providers, family caregivers are a critical part of an interdisciplinary care team helping to meet the needs of individuals with multiple chronic care conditions. There are 44.4 million family caregivers providing unpaid care to a loved one over the age of 18. Approximately 25 percent of these caregivers are caring for someone with Alzheimer's or other dementia. The economic value of caregivers' unpaid contributions is estimated at around $375 billion in 2008, according to AARP's Public Policy Institute. Lack of communication and coordination among the patient and family caregiver and the health care provider produces poor health outcomes such as: medical errors, duplicative or unnecessary tests, inappropriate emergency room visits, hospital re-admissions due to poor follow-up care, inadequate discharge planning, lack of appropriate care and support services upon returning home, adverse drug interactions and ultimately rising medical costs.
We urge the panel to embrace five principals to guide your work:
- Conduct your research in an open and transparent process, one that is open to all stakeholders, including family caregivers;
- Include patients and family caregivers in any review panels for comments about what procedures and decisions are being compared;
- Communicate your findings in a way that is easily understandable to the general public;
- Identify ways to partner with family caregivers in their role as primary care coordinators for patients with chronic care illnesses or disabilities; and
- Ensure the appropriate inclusion of and support for family caregivers in developing long-range goals for health care reform.
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