Outcomes of genetics services: creating an inclusive definition and outcomes menu for public health and clinical genetics services.
Third party payers, funding agencies, and lawmakers often require clinicians and public health agencies to justify programs and services by documenting results. This article describes two assessment tools--"Defining Genetics Services Framework" and "Genetics Services Outcomes Menu," created to assist public health professionals, clinicians, family advocates, and researchers to plan, evaluate, and demonstrate the effectiveness of genetics services. The tools were developed by a work group of the Western States Genetics Services Collaborative (WSGSC) consisting of public health genetics and newborn screening professionals, family representatives, a medical geneticist, and genetic counselors from Alaska, California, Hawaii, Idaho, Oregon, and Washington. The work group created both tools by an iterative process of combining their ideas with findings from a literature and World Wide Web review. The Defining Genetics Services Framework reflects the diversity of work group members. Three over-lapping areas of genetics services from public health core functions to population screening to clinical genetics services are depicted. The Genetics Services Outcomes Menu lists sample long-term outcomes of genetics services. Menu outcomes are classified under impact areas of Knowledge and Information; Financing; Screening and Identification; Diagnosis, Treatment, and Management; and Population Health. The WSGSC incorporated aspects of both tools into their Regional Genetics Plan.
Silvey
Kerry
K
Oregon Center for Children and Youth with Special Health Needs, Oregon Health & Science University, Eugene, OR 97403-5254, USA. ksilvey@uoregon.edu
Stock
Jacquie
J
Hasegawa
Lianne E
LE
Au
Sylvia Mann
SM
D002648:Child; D003695:Delivery of Health Care; D005190:Family; D005817:Genetic Counseling / Q000458:organization & administration; D033142:Genetic Services / Q000458:organization & administration*; D005820:Genetic Testing / Q000458:organization & administration; D006285:Health Planning; D006801:Humans; D017063:Outcome Assessment, Health Care; D015397:Program Evaluation; D011634:Public Health; D011785:Quality Assurance, Health Care; D016896:Treatment Outcome; D014481:United States