Opportunities, from Wylie Burke
Jan 14, 2008, 12:00 AM, Posted by RWJF Blog Team
Wylie Burke, MD, is an expert in the implications and appropriate use of genetic information in clinical and public health practice. Her research addresses the bioethical and health policy implications of genetic technology. She is currently Chair, Department of Medical History and Ethics, and Professor of Medical History and Ethics, University of Washington School of Medicine, has served on the NIH National Advisory Council for Human Genome Research and the Secretary's Advisory Committee on Genetic Testing, and is formerly the President of the American Society of Human Genetics.
Burke suggested several areas in which Pioneer could, she felt, play a stronger role:
Given the claims currently being made for the transformation of health are by genomic technologies, it is striking that no project – at least by the descriptions given—seems to be addressing this area. The claims for genomics seem badly in need of critical and pragmatic assessment, so this might be an area for future investment.
This seems to be an area of under investment. There do not appear to be any projects in your portfolio that are looking critically at how evidence is used to craft practice guidelines, or what constitutes relevant evidence for health care practice. These questions represent important corollaries to investigations of patient-centered care, patient measures of health care quality and efforts to decrease the cost of health care.
Boundaries of Health Care
I think there is a need to explore the concepts of health and health care and their relationship to the obligations of health care providers and delivery systems; and to consider these issues from the perspective of emerging technologies. If we assume that decisions about the delivery of health care service should be based on evidence of outcome benefit and wise use of resources within the health care commons, how do we decide when an activity is part of healthcare or a covered service? How do different stakeholders approach the issue? What are the implications for innovative funding? e.g. of workplace prevention, residentially based health care, or delivery of screening in a consumer service model.
Social Networks and Structures at Older Ages
Recognizing that end of life care is an area of active research, there still seems ample opportunity for considering innovations informed by interdisciplinary thinking, in particular about how ideas in diverse areas like architecture, bioethics, public health, and preventative medicine might work together to promote high quality of life for low-income elders.
Many health care services are provided without a robust evidence base. This problem speaks to several needs:
- Policy Analysis to identify the barriers and incentives for different types of research
- Rigorous assessment of the evidence need to justify different kinds of medical innovation. How can we make best use of less expensive methods of gathering evidence? When is a Randomized Clinical Trial necessary?
- Consideration of some problematic issues in research ethics: e.g. performing research without consent to address important health care problems (such as optimal management of patients in cardiac arrest or precipitous pre-term labor) building data repositories in clinical settings; public health interventions among disadvantage populations.
This commentary originally appeared on the RWJF Pioneering Ideas blog.