Using Data for Policy and Practice
Improving Children's Health Through Health Services Research was a special 1-day meeting held June 26, 1999, in Chicago. The state of the science in children's health services research
was explored, including public and private funding opportunities, networks for
conducting research, and uses of research in policy and practice. The meeting
was co-sponsored by the National Association of Children's Hospitals and Related
Institutions (NACHRI), with the Agency for Health Care Policy and Research (AHCPR),
the American Academy of Pediatrics (AAP), the David and Lucille Packard Foundation, the
Association for Health Services Research (AHSR), the Robert Wood Johnson Foundation, and Data
Dr. Jane Holl provided a researcher's perspective on conducting health services research in the community. From her experiences in Rochester, New York, evaluating health insurance plans for schoolchildren, she identified the advantages and disadvantages of community-based research.
Advantages of such research include:
- Focused, tangible research questions.
- Ease of access and collection of data.
- Broadened collaborations (e.g., with non-academics, including the New York State Department of Health and the Rochester School Board).
- Interested local funding sources.
- Direct translation of results.
- Issues of generalizability beyond local community.
- Need for study design to include the needs of community collaborators, often resulting in a disconnect between the community and researchers.
- Differing goals of academic and non-academic collaborators. For example, academics' career goals may require more research rigor than possible when meeting the need for immediate information by the community.
The potential for using the data from community-based studies to improve public policy and practice outweighs the disadvantages. For example, the New York State Child Health Plus studies demonstrated improvements in quality of care and child health status that guided the development of both policy and practice to improve health outcomes for children.
Mr. Richard Sewell discussed the evolution of the Chicago Health Policy Council (CHPC). CHPC began as the Chicago Health Policy Research Council (CHPRC), funded by the Chicago Community Trust. The purpose of the Council was to establish a health policy research agenda, promote health policy research, establish a health data resource center, and form an academic consortium. CHPRC was successful on many counts, but the Chicago Community Trust was not able to continue support of the Council. Thus, the Council's name was changed and its mission modified.
CHPC's mission is to inform policymakers and others in the Chicago region "through a rational, unbiased process based on the best research and evidence... to facilitate knowledge-based change and action." Although not engaged directly in the conduct of research, CHPC provides valuable information for policymakers through policy papers on key topics and a quarterly report on health in sentinel communities. Mr. Sewell reported how CHPC's information and advocacy efforts influenced a State Medicaid waiver by bringing relevant data and analysis to the Illinois legislature.
Dr. Steve Freedman challenged child health services researchers to focus policy-relevant research on "who's asking and what do they want to know", and to understand that findings significant at the p<.05 level may be good for publication but are not usually necessary for policymaking:
- Legislators want to know if their legislative policies are successful in meeting the needs addressed by policy interventions. How successful are they in meeting the intent of the law or regulation?
- Executive agencies want to know if they are meeting their explicit mandates and if they can improve processes to meet those mandates.
- Managed care plans want to know, among other things, how they are doing in comparison to other plans.
- Advocates want to know what's wrong with the system and what can be done to improve it.
- Policymakers at all levels typically want macro- not micro- level information.
Researchers may not always find policymakers' questions as scientifically and intellectually challenging as more traditional research questions. Dr. Freedman encouraged child health services researchers to work with the policy process to help frame meaningful questions and provide sound information to evaluate policies and guide the development of future policies and regulations. His Institute's motto is: "If they want a toaster, give them a toaster."
Dr. Kohrman asked the presenters to focus on how they dealt with the conflict between policy demands and the demands of an academic research career. Mr. Sewell noted that the CHPRC had an agenda (health aspects of empowerment zones) that researchers did not respond to. Dr. Holl noted that in Rochester a long tradition of collaborations between practitioners and researchers made meeting both goals possible. Dr. Freedman said his advantage was that the Institute for Child Health Policy is located within the University, meaning that he is able to assure faculty that they have 100-percent support from the Institute even when they are not successful in their efforts. Policy-oriented research provides an opportunity to avoid the museum-like isolation which often characterizes traditional research environments. In addition, children's health services researchers should always remember why they are doing research—for the kids!
Using Data for Policy and Practice. Presentation Summary, Improving
Children's Health Through Health Services Research, Chicago, June 26, 1999.