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This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U40MC00149. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government
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Family Voices has been awarded a new three-year cooperative agreement from MCHB as the National Center for Family Professional Partnerships (NCFPP). The new project period will be June 2016 through May 2019. The project will focus on supporting and developing family and youth leadership, particularly the leadership of racially and ethnically diverse families of CYSHCN. This agreement will promote the engagement of diverse families in meaningful ways in systems level activities and encourage the reduction of health disparities through family engagement. The Statewide Parent Advocacy Network (SPAN), which serves as the Family-to-Family Health Information Centers (F2F) and Family Voices State Affiliate (FV SAO) in New Jersey, is partnering with Family Voices in this work, bringing their extensive expertise and experience in family and youth leadership training, especially for racially and ethnically diverse minority families.
Download the Project Abstract.
Access to medical records helps families of children with special needs to better partner in health care decisions. New guidance on HIPAA (Health Insurance Portability and Accountability Act) helps address some of the barriers parents have faced getting medical records such as lack of electronic access, sharing with other providers, etc... Learn more in this blog.
Data aggregated from reports submitted by all 51 F2Fs summarizing their work from June 1, 2014 through May 31, 2015 (FY2015) demonstrate their:
- Direct Support to 155,950 families and 74,225 professionals
- Estimated Overall Outreach to 928,225 Families and 350,960 Professionals
- Impacting 92% of families who are better able to partner with providers & navigate systems
This report also includes state by state charts listing F2F partnerships, methods of assistance, involvement in specific initiatives, and additional sources of funding. Read more about the outreach, assistance, training, and impact of F2Fs in this 12-page report.
Did you know that family-centered care can improve patient and family outcomes, increase satisfaction, decrease health care costs, and lead to more effective use of health care resources? You can learn more about what makes health care family-centered by using the Family Voices Family-Centered Care Assessment tool, a 24-question tool to measure family centeredness of provider care based on ideas created by families themselves.
The article, Psychometric Evaluation of a Consumer-Developed Family-Centered Care Assessment Tool, has recently been published online in the Maternal and Child Health Journal. This study describes the process that yielded a robust and psychometrically sound instrument for which there has been substantial interest from health care providers, researchers, and family groups. The FCCA provides an important alternative to existing measures of families’ experiences of health care, including the CAHPS, which does not address the full range of topical areas deemed important to families, and the MHFI, which lacks the rigorous psychometric evaluation of the FCCA. The findings from this study also provide compelling evidence of the value of families taking substantive roles as researchers in the development of quality measures. The high level of validity of the family-created questions in this study indicates how consistent the concepts in the developed questions are with the expectations of families across all demographic groups. This model of partnership in research, with consumers themselves in the lead, provides an important model for future quality measure development.
Learn more about the FCCA, including requesting access to use the tool here.