TOPIC: Data and Research

Materials

• 2007-2008 F2F HIC Data Brief - (pdf)  |  (hardcopy – catalog order)
A 1-page data brief highlighting the activities of Family-to-Family Health Information Centers from July 2007 through June 2008.
• Families Helping Families of Children and Youth with Special Health Care Needs & Professionals who Serve Them Data Summary (F2F HICs and FV Network)-pdf
• 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) Data Summary (21 F2F HICs)-pdf
• 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)Data Summary (13 F2F HICs)-pdf
• 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) | Data-pdf
• 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.
• Data Resource Center on National Survey for Children with Special Health Care Needs DRC-html
• Development of an interactive website to access and help understand data from the National Survey, a survey conducted by the CDC in 2000.
• Consortium for Children and Youth with Disabilities and Special Health Care Needs Consortium-html
• Research briefs and other publications written with a family perspective.
• Your Voice Counts! Your Voice Counts-html
• A survey of over 2200 families in 20 states about their health care experiences, 1998-1999.
• From Data to Action Data to Action-html
• 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 Employee Benefits-html
• 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) FiPPs-html
• 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) Annie Casey Survey-html
• 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