HRSA Grant: National Center for Family/Professional Partnerships for CSHCN Healthcare Improvement

Applicants should be ab

Applicants should be ab

The Family Professional Partnerships Program (FPP) promotes the following objectives to improve the health delivery system and quality of life for children (and youth) with special health care needs (CSHCN) and their families: (1) family-centered care, (2) cultural and linguistic competence, and (3) shared decision-making for families of CSHCN at all levels of decision-making (individual, peer, community, etc.). Program activities will primarily be carried out through federal leadership strategies and one cooperative agreement – the National Center for Family/Professional Partnerships and the Family-to-Family Health Information Centers. To ensure continued effectiveness and positive program outcomes, the scope of this center is being realigned to focus on significant priorities in a changing health care environment that have been identified by State Title V agencies, the Health Resources and Services Administration (HRSA) and the U.S. Department of Health and Human Services (HHS).  The FY 2013 priority needs are: 1) full implementation of the 2010 Patient Protection and Affordable Care Act (ACA); 2) strengthening the primary care workforce; and 3) improving access to quality care/innovation.

The National Center for Family/Professional Partnerships

The Institute of Medicine (IOM) Report Crossing the Quality Chasm: A New Health System for the 21st Century established shared decision-making and patient/family centered care as key elements of a quality health care system.  Since the IOM Report, national quality indicators of family/professional partnership, shared-decision-making, and patient/family-centered care have been established and have shown that CSHCN benefit from family/patient-centered care by improved transition, fewer unmet needs and fewer problems accessing needed referrals. Moreover, research has shown that an increase in shared-decision making is significantly associated with lower total health care out-of-pocket costs and decreased utilization (hospitalizations and emergency department visits) for CSHCN. This supports the importance of shared decision-making in the ACA provisions.

Anticipated needs that states will likely have include finding effective ways to bring consumer perspectives into health care policies, planning, implementation and quality improvement activities based upon evidence-based strategies; and preparing the workforce to inform families of changes in services and access.

In order to assist State Title V programs and their partners to better partner in full implementation of the ACA this center will provide: 1) support to a broad national, regional and state network of informed family leaders who can partner, not only at the individual and peer levels of decision-making, but also at the community, state and systems levels; 2) assistance in connecting states with appropriate contacts for family perspectives and participation, including those of minority and rural populations, in the development of state Health Insurance Marketplaces (Exchanges), Medicaid expansion plans, community health teams, etc.; and

3) family-friendly, culturally and linguistically appropriate information and explanation of coverage to states, patient navigators, families and providers in collaboration with other HRSA funded grants .

To assist in workforce development in state public health programs, this center will  1) provide training on family-centered care and FPP as the foundation of shared decision-making through their national, regional and state networks to the state,  primary care and community workforce  (such as state public health programs, care coordinators, interdisciplinary care teams, patient navigators, community health workers, primary care extension hub sites, and when possible, in federally-qualified health centers and National Health Service Corps clinicians.)

In order to assist in access to quality care/innovation, this center will: 1) document and spread innovative, evidence-based and best practices on shared decision-making to inform policy, practice and quality improvement activities in public health; and 2) disseminate and provide technical assistance on utilization of tools such as scientifically validated measures for family-centered care in order to help states measure and track impact of changes in quality of care that result from integration of family-centered care and CSHCN shared decision-making into medical practice.

The grantee will conduct ongoing evaluation and annual impact assessments of activities in all three priority areas mentioned which may include follow-up calls/emails to states and/or review of Title V Block Grant applications.

Expected outcomes include:
As a result of training, there will be an increased number of states (Title V CSHCN programs and their partners) that successfully facilitate incorporation of family-centered, culturally competent care and shared decision-making principles into ACA policies, planning and implementation;
Documented measures of impact on quality of care/services.

Although this center has been in existence for a number of years, this effort will have an emphasis on evaluating the spread, impact and outcomes of activities on service delivery systems, policies, practices/providers and families using those services. The center should collect information from targeted state Title V CSHCN programs and partner organizations on gaps and successes in reaching project goals of 1) full implementation of the ACA; 2) strengthening the primary care workforce; and 3) improving access to quality care/innovation.

Once gaps are identified, small changes to the system/organization can be planned, implemented and results measured by states to determine if these changes were effective in improving systems, services and supports to families. Those changes that are proven effective can be spread within the state, organization, and to other grantees.

Required Evaluation of Effectiveness

The Center is required to collect data to evaluate the effectiveness of their interventions and demonstrate that awarded federal funding has yielded demonstrable programmatic outcomes.  Specifically, the purpose of evaluation activities will be to ascertain whether the Center achieved prospective/desired outcomes.  The collection of evaluation data is consistent with the federal government’s desire to promote fiscal transparency.  Awardees will help ensure the transparency and documentation of awardee processes, policies and activities and enhance program monitoring, program improvement and program decision-making.  (See more on pp. 18, 20, 21, 29 and 34).