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Data and Research

Data Use Guidelines

Information About Using Data

Report of Assistance, Training, and Activities provided by Family-to-Family Health Information Centers June 1, 2009 - May 31, 2010

This report summarizes data aggregated from F2F HICs for the period June 1, 2009 through May 31, 2010. Information is included on individuals served, families served by race, requests for technical assistance, individuals trained, people served by 2010 outcome, and data on broader outreach activities.

2007-2008 F2F HIC Data Brief

The 2008-2009 F2F HIC Data Report reviews statistics on the activities of 40 Family-to-Family Health Information Centers (F2F HICs) from July 2008 through May 2009, along with data from the National Survey of CSHCN and other sources, to demonstrate the importance of F2F HICs in assisting families of children with special health care needs/disabilities. This report highlights the impact of special health care needs on children, families, and programs/policies.

Families Helping Families of Children and Youth with Special Health Care Needs & Professionals who Serve Them

A summary of data reported by the Family Voices Network and Family-to-Family Health Information Centers for the period July, 2005 through June, 2006, about: families and professionals needing assistance, information and assistance provided, help with health care financing issues, and outreach to families and professionals.

Data Summary of 21 Funded F2F HICs (July, 2004 through June, 2005)

Findings from 21 funded F2F HICS for the period July, 2004 through June, 2005, summarized by: families and professionals needing assistance, information and assistance provided, help with health care financing issues, and outreach to families and professionals.

Data Summary of 13 Funded F2F HICs (July, 2003 through June, 2004)

Findings from 13 funded F2F HICS for the period July, 2003 through June, 2004, summarized by: families and professionals needing assistance, information and assistance provided, help with health care financing issues, and outreach to families and professionals.

Family to Family Health Information Centers Data Summary (July, 2003 through June, 2004) (10/2004) (NW182H/P)

Charts and highlights of data reported to Family Voices by F2F HICs and Network Members; includes data about contacts with families and professionals, topics of information provided during contacts, issues with health care financing, and broader scope activities, such as newsletters distributed, listserv members, handouts, meetings, and underserved population reached.

Consortium for Children and Youth with Disabilities and Special Health Care Needs

Research briefs and other publications written with a family perspective.

Your Voice Counts!

A survey of over 2200 families in 20 states about their health care experiences, 1998-1999.

From Data to Action

Information about managed care services & policies for children with special health care needs through interviews and meetings with plans and key stakeholders.

Employment and Benefits

Resources to help families explore work benefits, and balance work with caring for their children with special health care needs developed from interviews with employers and parents.

Families in Program and Policy (FiPPs)

Survey and findings regarding family involvement with state Title V programs, including family participation in CSHCN and MCH initiatives, advisory committees, employed positions, and more.

Building Partnerships with Managed Care Plans (The Annie Casey Survey)

Building Partnerships with Managed Care Organizations: A 1995 Survey of Families with Children with Special Health Care Needs in Atlanta, Denver, Des Moines, and Seattle