Lately, the media
has been filled with reports of advances and discoveries in the field of
genetics, that will further our abilities to diagnose, treat, and prevent
certain health conditions. However,
along with these new capabilities come ethical, legal, social and financial
issues. Although Oregon already has
many high quality genetics services in place, the state will need other medical
services, educational programs, and policies to keep-up with the scientific
advances in genetics and to address people’s concerns. For example, we will need to ensure that all
Oregonians have access to culturally competent genetic health services, we will
need to educate the public about new genetic discoveries, and we will need
legislation to make sure that our genetic information remains private and
confidential.
In June 2000, the
Center for Child and Family Health (CCFH) at the Oregon Health Division (OHD)
and the Child Development and Rehabilitation Center (CDRC) at Oregon Health
Sciences University (OHSU) received a two-year federal grant to assess and plan
for genetic services and programs in Oregon.
The program’s primary objectives are to:
Hire staff to
facilitate a public health planning process for genetics
Assemble a
broad-based genetics and ethics advisory council
Conduct a
statewide genetics needs assessment and develop a state public health genetics
plan
Create a plan
for the further development, expansion and integration of child and family
health information systems
Project Directors:
Donalda
Dodson, RN, MPH, Director, Center for Child and Family Health, OHD
Clifford
J. Sells, MD, MPH, Director, Child Development and Rehabilitation Center, OHSU
Project Supervisor:
Astrid
Newell, MD, Acting Perinatal and Child Health Section Manager, and Medical
Consultant, OHD
Project Staff:
Kerry Silvey,
MA, State Genetics Services Coordinator, CDRC
Rachel H.
Shapiro, MPH, Genetics Community Planner, OHD
In August 2000, a
Public Health Genetics Steering Committee was convened to provide guidance to
the genetics program staff for the genetics assessment and planning
process. The Steering Committee was
comprised largely of partners at OHD and CDRC such as the Center for Public
Health Laboratories, Office of Multicultural Health, Center for Disease
Prevention and Epidemiology. Over the
past few months, other partners from outside OHD and CDRC were invited to
participate, and today we have the Genetics Plan Advisory Council. Membership now includes consumers (those
impacted by a genetic condition), representatives from multicultural
organizations, genetic service providers, other health care providers,
educators, health care payors/insurers, ethicists, and others.
Assessment Activities
The Advisory
Council will provide expertise and recommendations to the public health
genetics needs assessment and planning process. A needs assessment is a process of compiling, analyzing, and
distributing information in order to assist in the development of improved
systems of care for individuals and families impacted by genetic
conditions.
The purpose and
objectives of Oregon’s assessment are as follows:
Purpose: To provide information necessary
to develop a statewide public health genetics plan to ensure improved systems
of care for individuals and families impacted by or at risk of genetic,
congenital, and/or familial disorders.
Objectives:
To
identify the genetic resources available in Oregon, and describe strengths,
weaknesses, and gaps in the current genetic service system.
To
obtain input from diverse stakeholder groups to set priorities for health care
delivery system improvement.
To
describe available and needed data sources and linkages.
In order to
identify current and needed genetic services, we want to make sure we are
looking at our task from a public health perspective. This meant not just assessing medical genetic services, but also
looking at issues such as education, policies and legislation, research, and
partnerships. To ensure that we had this broad perspective, we used the 10
essential services of public health as a framework.
Public Health Framework
If you are new to
the world of public health, we’d better stop right here, and give you a crash
course in the 3 core functions and the 10 essential services of public
health. In The Future of Public
Health (1988), the Institute of Medicine critically assessed the status of
public health in the US, and came up with three core functions:
assessment, policy development and assurance.
Later (1994), public health organizations elaborated on the 3 core
functions, by developing the ten essential public health services.
It is easy to get
lost in the language of the essential services, so we have boiled them down
into two/three word concepts, as follows:
|
The 10 essential services as of public health (adapted for genetics): |
|
Our two/three word translations: |
|
Monitor health status
to identify community health problems.
|
š |
Data/Surveillance |
|
Diagnose and
investigate health problems and health hazards in the community. |
š |
Environment/Gene interaction (?) |
|
Inform, educate, and
empower people about health issues. |
š |
Education: Public and Consumer |
|
Mobilize community
partnerships at the state and local levels to identify and solve health problems. |
š |
Partnerships |
|
Develop policies and
practices that support individual and community health efforts. |
š |
Policy and Legislation |
|
Enforce laws and
regulations that protect health and ensure safety. |
š |
Policy and Legislation |
|
Link people to health
services, including genetics services, and assure the provision of health
care when otherwise unavailable. |
š |
Services: Genetics Programs Facilities/Providers |
|
Assure a public health
and personal health care workforce competent in genetics. |
š |
Education: Provider
|
|
Evaluate effectiveness,
accessibility, and quality of personal and population-based health services,
including genetics. |
š |
Services: Affordability, Quality, Cultural Competency |
|
Research for new
insights and innovative solutions to health problems. |
š |
Research |
If we then rearrange the list in the right column above, we get a great
list of topic areas to cover in the assessment:
Data and
Surveillance
Services
Genetic Programs
Facilities and Providers
Access, Affordability, Quality, Cultural Competency
Education
Provider
Public
Policy and
Legislation
Research
Partnerships
Gene/Environment Interaction (we’re still thinking about this one!)
Again, using the
public health framework means that we will not only be looking at clinical
genetics services and programs, but we will be assessing genetics surveillance
and data, education, research, policy and legislation, and partnerships. For example, some of the questions we are
interested in answering in our assessment, include:
•
How many
individuals are there in Oregon with genetic, congenital, and/or familial
disorders? What do they look like demographically?
•
What are the
current and needed data systems and linkages?
•
What genetic
facilities and providers are available to meet the genetic health needs of
Oregonians?
•
Do we have a
workforce that is competent in genetics?
•
Are the
general public and key policy makers well-informed about genetics and its
impact on health?
•
What statutes
and regulations protect the public interest while supporting the provision of
comprehensive genetic services?
•
What
partnerships at the local and state level exist for the support of a genetic
service system?
•
Is the genetic
service system founded in both basic and applied research?
To answer these assessment
questions, we have begun to collect and analyze data. Some data is already collected on a regular basis, such as birth
certificate data, infant death data, and newborn screening data. Other data was collected for research
studies, reports, or other public health work, and may be useful for our
assessment. Examples include a survey
conducted by a clinical geneticist regarding primary care physicians’ attitudes
and utilization of genetic services; focus groups conducted by a local advocacy
organization regarding the public’s attitudes about genetic privacy issues; and
a survey conducted by a public health genetics intern regarding perceived
barriers for people in accessing genetic services.
These existing
sources can’t answer all of our assessment questions, so we have also begun to
collect our own data. We are in the
process of conducting surveys, interviews, and focus groups with the public,
consumers, health care providers, genetic service providers, public health
professionals, and others. We will be
sharing our results with you as we go.
Our efforts will
result in the creation of a five-year strategic plan for genetic health
services, educational programs, policy and legislative resources, etc. in
Oregon. The plan will include a
prioritized list of objectives, strategies and action steps for accomplishing
the objectives, and time-lines.
At the same time
that the assessment and planning process is proceeding, the health division is
working towards the creation of an integrated data system called Family Net, to
support services to children and their families by streamlining and simplifying
data entry and use. Plans for the
integration of newborn metabolic and hearing screening data is currently
underway, and we will continue to discuss the integration of other genetics
data into this data system.