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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
Though there is much agreement on the value of family involvement at the systems level of health care – where policies, programs, and services are created or changed – it is still rare for families to have more than a token amount of power and influence. A new issue brief from Family Voices provides a framework, featuring four domains and specific criteria, that organizations can use to measure and improve the level of family engagement in their work. Read the Issue Brief.
Working in collaboration with the Association of State and Territorial Health Officials (ASTHO), Family Voices and New Jersey’s Statewide Parent Advocacy Network (SPAN) and the Oklahoma Family Network developed two new briefs that describe their states’ efforts to ensure that diverse family representatives were “at the table” as partners in helping to develop programs and policies for Medicaid and Managed Care Organizations.
Read these two briefs here:
The Young Adult Health Care Social Media Toolkit was developed by Got Transition’s staff, and members of the National Young Adult Transition Advisory Group to promote the new Health Care Transition Quiz, “Are You Ready to Transition to Adult Care?” The toolkit incorporates transition into adolescent and young adult well visits. Family Voices participates on the Got Transition Cabinet Executive Team, along with members of from the National Young Adult Advisory Group, Got Transition Staff, and others.
On February 21, 2018, the Health Resources and Services Administration (HRSA) published a Notice in the Federal Register requesting public comment on the new Family-to-Family Health Information Center (F2F) Feedback Surveys. As described in the Notice, HRSA has developed feedback surveys to determine the extent to which F2F HICs provide service to families of CYSHCN and health professionals who serve such families. This Notice was published pursuant to the requirements of the Paperwork Reduction Act of 1995, which requires agencies to estimate the paperwork burden associated with its collection of information.
HRSA specifically requests comments on:
(1) The necessity and utility of the proposed information collection for the proper performance of the agency's functions
(2) The accuracy of the estimated burden of completing the survey
(3) Ways to enhance the quality, utility, and clarity of the information to be collected
(4) The use of automated collection techniques or other forms of information technology to minimize the information collection burden.
The Notice does not include the actual survey on which comments are being solicited. Directions for obtaining the survey and submitting comments can be found in the Notice. Family Voices will get a copy of the survey, distribute it to the F2Fs, and compile comments from F2Fs that wish to provide them. Anyone can submit individual comments as well. Comments are due April 23, 2018.
Data aggregated from reports submitted by all 51 F2Fs summarizing their work from June 1, 2016 through May 31, 2017 (FY2015) demonstrating their Direct Support, Estimated Overall Outreach, and Impact.
This year the Family-to-Family Health Information Centers (F2Fs) and the Family Voices State Affiliate Organizations (SAOs) have been busy helping families with children and youth with special health care needs navigate the complex world of healthcare. This document features highlights from each of these family-led organizations around the country, and includes links to the 2016 State Data Reports for each of the F2Fs.
Zika Care Connect is dedicated to improving access to clinical services for families affected by Zika in 10 specific areas throughout the United States and its territories that are at high risk for Zika: California, Florida, Georgia, Maryland, New Jersey, New York, Texas, Virginia, Puerto Rico, and the US Virgin Islands. With the ultimate goal of lessening the effects of Zika on children and families, this important resource is now available to help pregnant women and families find the medical help they need. Zika Care Connect plans to expand to 5-10 additional jurisdictions in the near future.
What’s on the Zika Care Connect website?
The Zika Care Connect website contains information to help pregnant women and families find the appropriate healthcare professional and resources that can address their specific needs.
Family Voices National Center for Family/Professional Partnerships (NCFPP), in partnership with the Statewide Parent Advocacy Network (SPAN), is pleased to offer a new training series targeted at building partnership skills for systems-level collaboration of diverse family leaders and group leaders, such as Title V Directors and others.
Serving on Groups is a workshop specifically targeted to family-led organizations who build leadership of families. This interactive Train-the-Trainer session will provide skills to train families who currently serve or want to serve on a decision-making group. Participants will learn about group processes, useful tools for groups, understanding data, and skills to maximize participation of diverse family leaders in systems-level groups.
Leading by Convening is an interactive workshop that will improve your skills to: engage all team members, including diverse parents, on key issues; build support for shared work; address the adaptive, or relationship-based, aspects of change; and achieve your improvement goals! This workshop is particularly targeted to leaders of groups, such as Title V directors or their designees who run advisory groups, work groups, etc. In this hands-on workshop, you will be provided with tools that have been proven effective through use “on the ground” with diverse stakeholders including family leaders.
Family Voices is pleased to announce the receipt of a new award from the Patient-Centered Outcomes Research Institute (PCORI) to establish a national learning collaborative supporting expanded capacity for research partnerships among family organizations and underserved communities. Fourteen Family-to-Family organizations (F2F) and Family Voices state-affiliate organizations (SAO) will each work with a vulnerable or underserved priority community in their state to develop meaningful PCOR partnerships, while providing support for each other and learning best practices through bi-weekly videoconferences. Family Voices is partnering with the University of Nevada at Reno in this initiative.
Family Voices is pleased to announce supplemental funds to expand opportunities for families in the US territories, particularly those exposed to or affected by the Zika virus. These funds will allow us to expand collaboration efforts with multiple family groups and individuals, Title V, MCHB programs and agencies, and other professional partners in the territories as well as key national MHCB partners. This funding opportunity represents an important step forward for families in the territories toward the goal of engaging families in their child’s health care and as partners in programs and policies.
Current Focus of NCFPP
Check out the NCFPP brochure for a description of our current work through a cooperative agreement awarded by the Maternal and Child Health Bureau for the 2016-2019 grant period. This work will reduce health care disparities of families of CYSHCN by making health care more family-centered through the development and support of family and youth leadership, particularly of those from diverse backgrounds, at the systems or policy-making level.
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.