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Genetic Workforce Project
This is a collaborative project between the NEGC, University of New Hampshire, and ACMG.
Genetic Workforce Survey October 2011 Dear metabolic genetic medicine colleagues, In many states the number of recommended newborn screens are being expanded. This has implications for the number of patients seen in your practices and the coordination of care for these patients. We need your help to understand how these changes will affect your practice. Last year, the New England Genetics Collaborative conducted in-depth interviews with providers who treat patients with metabolic disorders identifiable by newborn screen in the New England region to examine the depth and scope of care provided, coordination of care, and provider perceptions about the impact of expanded newborn screening for metabolic disorders. Highlighted within our finding were: - Care coordination needs improving. Providers are engaging in a variety of roles with patients and their families.
- Extra-care activities, such as educating families and working with insurers, are time consuming and rarely reimbursed.
- Expanded screening will likely exacerbate these issues without some fundamental changes to how care is delivered.
We invite you to view the full report at: http://www.negenetics.org/Libraries/Ongoing_materials/GWF_phase_one_final_report.sflb.ashx These findings are only the first step in collecting empirical information on our field that will be valuable to the current and ongoing policy discussions affecting all of us. Now we are requesting your help. To better understand what providers face nationally, we are asking you to complete a short on-line national survey regarding your experiences caring for children with metabolic conditions. The survey was developed with the University of New Hampshire Survey Center with funding from the National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives (NCC). You can access the survey by clicking on the following link or by copying and pasting it into the URL line of your browser: http://www.unh.edu/survey-center/geneticswf.html Thank you for taking time out of your busy professional lives to help impact future discussions and policy directions in genetic medicine. For questions on this survey please contact: Robert J. McGrath, PhD
University of New Hampshire
Department of Health Management and Policy
(603) 862-5047
Robert.McGrath@unh.edu *The NCC is funded by U22MC03957, awarded as a cooperative agreement between the Maternal and Child Health Bureau/Health Resources and Services Administration, Genetic Services Branch, and the American College of Medical Genetics.
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