A New Approach to Assessing Family Engagement in Health Care Systems
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This webinar discussed assessing family engagement in health care systems. Beth Dworetzky presented a framework for assessing family engagement at the systems level using four domains: commitment, transparency, representation, and impact. Nanfi Lubogo discussed how her organization partnered with a genetics network to improve access to services for diverse families. Susan Chacon described how New Mexico involved families in its Title V needs assessment through representation on an expert panel, conducting outreach to gather family input, and ensuring family leaders were committed in the block grant process. The webinar took questions and provided contact information for the presenters.
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A New Approach to Assessing Family Engagement in Health Care Systems
- 1. A New Approach to Assessing Family Engagement in Health Care Systems Webinar January 23, 2019 at 10 am PST
- 2. Beverley H. Johnson BSN, FAAN President and Chief Executive Officer, Institute for Patient- and Family-Centered Care Today’s Moderator:
- 3. A Framework for Assessing Family Engagement in Systems Change April 2018 Issue Brief Access the brief and more at: lpfch.org/cshcn
- 4. Meet Our Speakers Project Manager, Family Voices Co-Executive Director, PATH Parent to Parent/Family Voices of Connecticut President, Association of Maternal and Child Health Programs Title V Director for Children’s Medical Services, Children and Youth with Special Health Care Needs Program, New Mexico Beth Dworetzky Nanfi Lubogo Susan Chacon
- 5. Ask Questions! We look forward to a lively discussion with our audience. Enter questions in the GoToWebinar question box.
- 6. Beth Dworetzky Project Manager, Family Voices
- 8. Systems-Level Family Engagement • Meaningful partnerships between organizations and family-led or community-based organizations • Meaningful collaboration between organization staff and family leaders who reflect the diversity of the communities they represent
- 9. Domain: Commitment Key Criteria: • Champion • Win-Win • Create opportunities • Work together to create mission, strategic plan, other programmatic documents • Provide support • Provide compensation
- 10. Domain: Transparency Key Criteria • Use data • Shared understanding of work • Provides training & support • Cultural awareness • No jargon • Convenient meetings
- 11. Domain: Representation Key Criteria • Partners with family-led or community- based organizations to recruit families • Race/ethnicity, Culture • Language • Age • Gender • Disability • Geographic Area
- 12. Domain: Impact Key Criteria • Choosing goals • Involved in implementation • Engaged in evaluation • Influenced programmatic options • Engagement improved services
- 13. Family Engagement in Systems Assessment Tool (FESAT) For systems of care that serve children, youth and families • Assess how well an organization engages families & youth • Guide the design of systems-level activities to ensure family & youth engagement • Improve efforts over time towards meaningful family & youth engagement
- 14. Contact Information Beth Dworetzky Program Manager Family Voices bdworetzky@familyvoices.org www.familyvoices.org
- 15. Nanfi Lubogo Co-Executive Director, PATH Parent to Parent/Family Voices of Connecticut
- 16. Assessing Family Engagement Nanfi N. Lubogo Co-Executive Director PATH Parent to Parent/Family Voices of CT (PATH/FVCT) CT Family to Family Health Information Center
- 17. Our mission is to promote and improve health and social well-being of those with inherited conditions through collaborations among public health professionals, private health professionals, educators, consumers and advocates in Maine, New Hampshire, Vermont, Massachusetts, Rhode Island and Connecticut. Continuous Quality Improvement Project Improve access to genetic services for diverse and medically underserved individuals NERGN and PATH/FVCT Family Voices State Affiliate Organization Parent to Parent Alliance Member CT Family to Family Health Information Center Health Insurance Marketplace Champion for Coverage CT KASA (Kids as Self Advocates) Project ECHO for Family Engagement Training
- 18. Partnerships • Across all 6 New England states • Hospital outreach to ensure representation from diverse and medically underserved families Compensation • NERGN’s budget included funding for the family-led organizations Representation MAINE NEW HAMPSHIRE VERMONT MASSACHUSETTS CONNECTICUT RHODE ISLAND
- 19. Creating shared language • Genetics 101 training to PATH/FVCT staff • Revised materials (no jargon, no acronyms) for families. • Reviewed website : negenetics.org • 37 genetic conditions information available at: gemsforschools.org Transparency
- 20. Impact Improving access • PATH/FVCT & NERGN worked together to improve access to genetic services to families • Follow up calls, genetics webinars, satisfaction surveys, resources and technical assistance
- 21. • Long term investments • F2Fs in grant proposal • Supported both RGN and family-led organization staff time to implement the Genetics 101 training Long-term investments • F2Fs included in grant proposal • Supported both NERGN and family-led organization staff time to implement the Genetics 101 training Commitment
- 22. Family Wisdom
- 23. Contact Information Nanfi Lubogo Phone: 203-234-9554 Email: nlubogo@pathct.org PATH Website: www.pathct.org
- 24. Susan Chacon President, Association of Maternal and Child Health Programs Title V Director for Children’s Medical Services, Children and Youth with Special Health Care Needs Program, New Mexico
- 25. 1190 S. St. Francis Drive • Santa Fe, NM 87505 • Phone: 505-827-2613 • Fax: 505-827-2530 • nmhealth.org Meaningful Family Engagement in the Title V Needs Assessment New Mexico Story
- 26. 1190 S. St. Francis Drive • Santa Fe, NM 87505 • Phone: 505-827-2613 • Fax: 505-827-2530 • nmhealth.org New Mexico Population Statistics • 45% Hispanic • 41%White, Non-Hispanic • 10% Native American • 26% under 18 live below the poverty level • Border MCH health issues related to communities in Southern NM and proximity to Northern Border of Mexico. • 19 Pueblos and 3 Reservations
- 27. 1190 S. St. Francis Drive • Santa Fe, NM 87505 • Phone: 505-827-2613 • Fax: 505-827-2530 • nmhealth.org TitleV Needs Assessment: Representation Data sets-compilation of data on CYSHCN from multiple sources such as: • NSCH • NSCHSN • IDEA-Part B and Part C • EPSDT • NM specific data sets 1st prioritization meeting with CYSHCN expert stakeholders All members involved in the decision making process and decisions accurately reflected the consensus of the group.
- 28. 1190 S. St. Francis Drive • Santa Fe, NM 87505 • Phone: 505-827-2613 • Fax: 505-827-2530 • nmhealth.org TitleV Needs Assessment: Transparency What are families saying in addition to our community based partners: • Survey developed based on priorities selected by expert panel to collect additional information from families and consumers of care • Spanish and English versions • We need to go to the places that families are gathering and convening to collect additional input.
- 29. 1190 S. St. Francis Drive • Santa Fe, NM 87505 • Phone: 505-827-2613 • Fax: 505-827-2530 • nmhealth.org CMS outreach clinics PRO Family LeadershipConference EPICS Family LeadershipConference F2F HIC Listserv
- 30. 1190 S. St. Francis Drive • Santa Fe, NM 87505 • Phone: 505-827-2613 • Fax: 505-827-2530 • nmhealth.org TitleV Needs Assessment: Impact AddressingTop Issues of Concern for Families: 1. Child abuse and neglect, 62% 2. Behavioral Health, 47.7% 3. Medical Home, 30.3%
- 31. 1190 S. St. Francis Drive • Santa Fe, NM 87505 • Phone: 505-827-2613 • Fax: 505-827-2530 • nmhealth.org TitleV Needs Assessment: Commitment Engaging Diverse Family Leaders inTitleV Block grant process is essential for our work • EPICS • Hands &Voices • Asian Family Center • Tribal HomeVisiting programs • FamilyVoices • Parents Reaching Out F2F HIC • Navajo Family Resource Center
- 32. 1190 S. St. Francis Drive • Santa Fe, NM 87505 • Phone: 505-827-2613 • Fax: 505-827-2530 • nmhealth.org Thank you!
- 33. Project Manager, Family Voices Co-Executive Director, PATH Parent to Parent/Family Voices of Connecticut President, Association of Maternal and Child Health Programs Title V Director for Children’s Medical Services, Children and Youth with Special Health Care Needs Program, New Mexico Beth Dworetzky Nanfi Lubogo Susan Chacon Submit your questions in the question box
- 34. Upcoming Events Introducing the FESAT: A Tool to Enhance Family Engagement in our Health Care System AMCHP Annual Conference, March 11 Stay Informed Visit: lpfch.org/cshcn
Editor's Notes
- Describes the areas where family leaders’ ideas were incorporated at the systems level to improve policies, programs, services, and practices.
- How this framework / tool is approaching family engagement in a different way – how it’s pushing the field forward.