Project Title: Western
States Genetic Services Collaborative
Applicant Name:
Hawaii Department of Health
Project Period: September 30, 2004 to September 30, 2007
Problem:
The most significant barriers to high quality and accessible
genetic services in Alaska, Hawaii, Idaho, Nevada, Oregon, and Washington
are the unique geography, population distribution, and lack of physician
genetic specialists outside large metropolitan areas. The population
distribution of each state includes one large metropolitan area, with the
remainder of the population being in smaller urban, rural, and remote areas.
Thus, one encounters the problems of planning and delivering services to
both high and very low-density populations. Alaska, Idaho, Nevada, eastern
Oregon, and eastern Washington depend heavily on the cooperation of genetic
services providers, policy planners, and genetics laboratories in Portland
and Seattle; and Hawaii depends on the cooperation of genetic services
providers in California and laboratories in Portland, raising problems of
interstate licensing, liability, reimbursement, and travel.
Goals and Objectives:
Goal A: Plan,
pilot, and evaluate a regional practice model that improves access to
specialty genetic services, comprehensive primary care, and care
coordination for Hawaii, Idaho, and Oregon children with heritable
conditions. Services for Alaska and Nevada children may be added in
subsequent years.
Objectives:
(1) Improve access to specialty metabolic genetic services for children with
suspected or confirmed metabolic conditions. (2) Improve access to clinical
genetic specialty services for children with suspected or confirmed genetic
conditions and congenital malformations. (3) Improve access to comprehensive
primary care for children with heritable conditions. (4) Improve access to
public health nurse care coordination services for children with heritable
conditions.
Goal B: Increase
the capacity of Alaska, California, Hawaii, Idaho, Nevada, Oregon,
Washington, and Guam genetics and newborn screening programs to perform
their assessment, policy development, and assurance functions.
Objectives:
(1) Develop strategies to monitor heath outcomes for children with heritable
conditions. (2) Promote third party reimbursement of in-person, telephone,
and telemedicine genetic services. (3) Assist the State of Alaska to assess
medical management and care coordination needs for children diagnosed with
heritable conditions. (4) Assist Guam to develop a public health genetics
plan. (5) Facilitate collaboration between genetic services providers,
families, primary care providers, state genetic programs, newborn screening
programs, and others to identify and implement strategies that increase the
availability of pediatric subspecialty care for children with heritable
conditions living outside urban areas.
Methodology:
The project will be guided by the following philosophies. (1)
Support and enhance services available in community. (2) Use and build on
resources already available. (3) Collaborate with others working on related
activities. (4) Utilize new and emerging communication technologies to
enhance achieving goals (and don’t use them when they are not efficient).
(5) Develop the minimum regional administrative infrastructure needed to
efficiently implement the project. (6) Incorporate the input of families,
health care providers, and state and local health agencies and emphasize
sustainability throughout all stages of the project. The major clinical
components of the practice model are: a telephone consultation service for
health care providers, telemedicine visits for children living outside large
urban areas; care coordination services by public health nurses; and “on
demand” condition-specific written information for health care providers.
Activities to improve state genetics and newborn screening programs include:
developing genetic services health outcome indicators, collaborating to
address interstate licensing, liability, and reimbursement issues; and
estimating resources needed to provide comprehensive genetics services for
Children and Youth with Special Health Care Needs in the region.
Coordination:
Alaska, California, Guam, Hawaii, Idaho, Nevada, Oregon, and Washington
State health agencies will collaborate to implement the project. The project
will build on the successful collaborations between states and
constituencies developed by Northwest Regional Newborn Screening Program,
PacNoRGG (the Pacific Northwest Regional Genetics Group), PSRGN (Pacific
Southwest Regional Genetics Network), and previous MCHB Region IX and X
collaborative activities.
Evaluation:
Continuing evaluation and ongoing refinement of activities are key features
of the practice model. Parent, health care provider, and state health agency
satisfaction; services provided; costs; time spent by clinicians; and
services utilization will be monitored throughout the project. Health
outcome indicators will be tracked once they are developed. A yearly
Regional Genetics Summit is planned to obtain feedback on past activities
and gather input for future activities. A comprehensive final evaluation
will be completed and submitted for publication.
Annotation:
The
project staff and collaborators will plan, pilot, and evaluate a regional
practice model that improves access to genetic services,
comprehensive primary care, and care coordination for Hawaii, Idaho, and
Oregon children with heritable conditions. Resources will also be dedicated
to increasing the capacity of Alaska, California, Guam, Hawaii, Idaho,
Nevada, Oregon, and Washington public health agencies to perform their
genetic services-related assessment, policy development; and assurance
functions.
