PROJECT
ABSTRACT
Project Title:
The Mountain States Genetics Regional
Collaborative Center (MSGRCC)
Applicant:
Mountain States Genetics Foundation
Project Period:
10/1/2004 to 9/30/2007
Problem:
Approximately 200,000 births occur annually
within the region, and 3 to 5 percent of these births are complicated by a
genetic condition. Therefore, at least 10,000 infants and their families
will require genetic services in the region each year. The resources to
serve these families are limited within each of the seven states.
Coordination and collaboration among all people, lay and professional,
concerned with genetics services help to maximize the use of relatively
scarce resources.
With the loss of substantial federal funding in 2001, the two
Regional Genetics Networks were less able to continue supporting and
coordinating most of these activities. While the genetic and public health
professionals in the Networks were able to continue abbreviated
collaborative activities, consumer members (families, advocacy groups, etc.)
had less access to collaborative opportunities. The Networks’ support for
educational and committee meetings had ensured a strong and active role for
consumers throughout the original regions. With lack of federal funding,
this support decreased over the past four years.
Goals and Objectives:
Goal 1: Establish the MoStGeNe Regional Center
Objective A: During the 2004 Annual Meeting of
the Mountain States Genetics
Network, identify and recruit
membership in the MSGRCC Advisory
Committee
and
begin the process of
identifying potential staff for the Center.
Objective B: As
quickly as possible, once the grant is awarded, the Foundation will hire and
equip Center staff. The Center will be “virtual”, in that staff offices
will be established in their homes. This makes it possible for staff to be
located in more than one of the seven states in the region.
Objective C: Develop formal Memoranda of
Agreements (MOAs) with public health
and other stakeholders in the
region to collaborate in the use of existing
telecommunications
technologies.
Goal 2: Update and regionalize the existing needs assessment
Objective A: Develop
a contract and hire a contractor who will identify informants at the
Networks and in each state health department to provide current and
appropriate needs assessments as well as an inventory of electronic
communications capacity. This should be performed very early in the
project’s first year. A contact list will then be completed.
Objective B: Develop
an RCC Advisory Committee including stakeholder representatives from the 7
states in the region, to assist the contractor’s review of the assessments
that are identified.
Objective C: The contractor and the Advisory
Committee will meet to identify shared
needs
and areas in need of updating.
Objective D: An electronic communications
capacity inventory will be completed by
the contractor and agreements for
in-kind use of teleconferencing and other
communication technologies will be initiated.
Objective E:
Produce a needs assessment document delineating shared needs among the
states.
Goal 3:
Develop a Regional Plan for Collaborative Genetics Activities
Objective A:
Develop a draft Regional Plan for Collaborative Genetics Activities.
Objective B: Provide the draft Plan for review by
Advisory Committee and staff members and obtain
feedback.
Objective C: Complete and print for distribution the
Regional Plan for Collaborative Genetics
Activities
Methodology:
Utilizing the existing committee and meeting structure of the
Mountain States Genetic Network and with the addition of an RCC Advisory
Committee, a contract will be developed to conduct a needs assessment
utilizing focus groups of stakeholders in all seven states. Based on this
assessment, the contractor, with extensive input from the RCC Advisory
Committee will develop and write a Plan for Regional Collaboration.
In the second and third years of the grant period, Requests
for Proposals for projects to accomplish goals set out in the Plan will be
sent out and awarded by the RCC Advisory Committee.
Coordination:
Partners for the RCC will be obtained from among the current
stakeholder participants in the Networks. These include: public health
programs; academic genetics providers, counselors and educators; family and
low-income advocacy groups; minority/ethnic advocacy groups; private and
public laboratories; legislators and other public policy makers.
Evaluation:
The
MSGRCC will utilize the existing committee structure, with the addition of a
strong and active Advisory Committee, to monitor, assess and evaluate the
performance of the project. One of the assignments that will be given to
the contractor for the development of the needs assessment update and Plan
will be the development of a systematic evaluation process. Having in place
evaluation measures before beginning the collaborative projects will ensure
the RCC’s ability to conduct a smoother and more accurate assessment of the
project.
At the
6 month mark of each of the grant years, the needs assessment and Plan will
be re-visited by the Advisory Committee, along with the Work Matrices, to
determine what revisions are needed. These revisions will be based upon the
on-going evaluation measures.
Annotation:
The Mountain States Genetics Regional Collaborative Center
will facilitate coordination, communication and collaboration among the many
stakeholders and partners across the seven state region. Using grant funds
in the first year, a needs assessment and Plan for Collaboration will be
completed. In the second and third years, grants will be solicited and
awarded to stakeholders for collaborative projects that will meet the
priorities established in the Plan.
