Fact Sheet November 2017 Engaging Families in Improving the Health Care System for Children with Special Health Care Needs by Priscilla Marbell, MD, MPH The evidence is clear that patient outcomes improve, and family and provider satisfaction rises, when health providers who care for children with special health care needs (CSHCN) actively partner with parents and caregivers in what is known as family-centered care. Yet offering family-centered care is only part of the story. To create a high-quality system of care, the family perspective must be actively pursued and incorporated at all levels of the health care system -- direct care, organizational design and governance, and policymaking.1 A review of relevant literature on patient and family engagement finds that at present most family engagement activities occur in physicians’ offices, hospitals, and clinics. There is both need and opportunity for families also to be engaged within the broader health care system and as contributors to public policy decision-making.1 Involving families in program and policy planning makes it more likely that the services provided will be appropriate and utilized. Evidence shows that family engagement: Leads to better quality of care 2, 3 Improves quality of life 4, 5 Lessens parental anxieties and fears 6 Reduces health care costs 3, 4 Improves families’ communication and relationship with health professionals 5 Increases patient and family satisfaction 4, 5 Increases family investment in care 7 Leads to more efficient use of services 5, 6 Barriers to family engagement that providers, agencies, health plans and policymakers can address include: Lack of knowledge about the value of family engagement Lack of consideration for families’ schedules when setting meeting times and locations Lack of compensation for families’ contributions and incurred costs Engaging Families in Improving the Health Care System for Children with Special Health Care Needs www.lpfch.org/cshcn Lack of orientation, mentoring and ongoing support to enable families to participate meaningfully Lack of opportunities for families to participate in program and policy planning Lack of guidance and protocols for engaging families Changes required in organizational culture and behaviors to engage with families Strategies for Improving California’s Health Care Systems Systemic changes will be necessary to establish family engagement as standard operating procedure for public and private programs and agencies that serve children and their families. These improvements can be implemented at the local and state levels. Local Health Care Organizations and Systems can: Promote the establishment of family advisory committees/roles in agencies, organizations, and practices 3, 8, 9, 10 Involve families as co-leaders in planning and decision-making 3, 7 Provide training and mentoring to parents and family members to enable leadership roles 8 Provide supports such as childcare and stipends for travel and time spent at meetings 8, 9, 11 Employ family members as peer navigators or mentors for other families 12 Include family engagement measures in organizational performance measurement 2 Identify and support networks for engaged families – for example Family Resource Centers Network of California 13 Promote and strengthen cross-sector collaboration of engaged families 8, 13 Establish family-friendly workplace policies 7 State Health Care Organizations and Systems can: Include families’ perspectives in developing health care policies and legislation 3 Require an audit of family participation by all state agencies that serve CSHCN 14 Develop effective materials to educate families and agency staff on the importance of family engagement 15 Require each state agency that serves families to include family members in an advisory role Develop mechanisms to enforce the family engagement requirements 14 Develop and use a standard measure to assess family engagement in the health care system Reward agencies and organizations that perform well on pre-determined family engagement measures 16 Convene informational legislative hearings for families of CSHCN to inform elected officials of their needs in terms of policy changes 14 Establish a cross-sector, state-level Family Advisory Committee that will be responsible for developing a standardized protocol for improving the quality of services 14 Engaging Families in Improving the Health Care System for Children with Special Health Care Needs Lucile Packard Foundation for Children’s Health Assure adequate funding to support the practice of family engagement by government agencies that serve children 14 Foundation Support: The Lucile Packard Foundation for Children’s Health has made family engagement a priority, and has provided support for a range of activities to improve the process: Surveyed State Title V programs across the country and California Children’s Services programs in California counties to identify the current status of family engagement Commissioned a report on families’ involvement in policymaking in public programs serving CSHCN in California Supported the Lucile Packard Children’s Hospital Stanford in establishing a statewide network of Family Advisory Councils, the California Patient & Family Centered Care Network, comprising pediatric hospitals and clinics Partnered with Family Voices of California to develop a standardized curriculum that has been used in its Project Leadership to train families to better participate in public policy advocacy Sponsored a workshop on family engagement for five managed care health plans that will be serving children currently enrolled in the state’s California Children’s Services program Publishes a bi-weekly newsletter to keep family and child advocates informed about programs and policies Provided funding to allow Support for Families/Family Voices of California to expand its communications capacity Provided grant support to national Family Voices to develop a Family Engagement Framework Supported a public hearing on family engagement, organized by Children Now, for the California State Senate Select Committee on Children with Special Needs The Foundation will continue to support activities that train families to become strong advocates and empower them to serve in policymaking roles, and will encourage local and state systems that serve children and families to actively engage consumer perspectives in their decision-making. Priscilla Marbell, MD, MPH, is a community health researcher with practical expertise working with non-profit organizations to promote maternal and child health and support underserved communities. 3 Engaging Families in Improving the Health Care System for Children with Special Health Care Needs www.lpfch.org/cshcn References 1. Carman KL, Dardess P, Maurer M, et al. Patient and Family Engagement: A Framework for Understanding the Elements and Developing Interventions and Policies. Health Aff. February 2013;32(2):223-231. 2. Child Welfare Information Gateway. Family Engagement: Partnering with Families to Improve Child Welfare Outcomes. Washington D.C.: U.S. Department of Health and Human Services, Children's Bureau; 2016. 3. Ma JL, Lai KY. Family Engagement in Children with Mental Health Needs in a Chinese Context: A Dream or Reality? Journal of Ethnic & Cultural Diversity in Social Work. 2014;23(3-4):173-189. 4. Maurer M, Dardess P, Carman K, Frazier K, Smeeding L. Guide to Patient and Family Engagement: Environmental Scan Report. Rockville: Agency for Healthcare Research and Quality; 2012. 5. Cené C, Johnson B, Wells N, Baker B, Davis R, Turchi R. A Narrative Review of Patient and Family Engagement: The "Foundation" of the Medical "Home". Med Care. July 2016;54(7):697- 705. 6. Committee on Hospital Care and Institute for Patient- and Family-Centered Care. Patient- and Family-Centered Care and the Pediatrician's Role. Pediatrics. February 2012;129(2):394-404. 7. Carman KL, Workman TA. Engaging Patients and Consumers in Research Evidence: Applying the Conceptual Model of Patient and Family Engagement. Patient Education and Counseling. January 2017;100(1):25-29. 8. Moran Finello K, Kanne Poulsen M. Unique System of Care Issues and Challenges in Serving Children Under Age 3 and Their Families. American Journal of Community Psychology. June 2012;49(3-4):417-429. 9. National Center for Medical Home Implementation. Moving Beyong Cooperation: Engaging Families in Health Care Organizations and Practices. Available at: https://www.youtube.com/watch?v=iFzOlfzX5qc. Accessed July 10, 2017. 10. Ahmann E, Dokken D. Strategies for Encouraging Patient/Family Member Partnerships with the Health Care Team. Pediatr Nurs. July-August 2012;38(4):232-235. 11. Family Voices. Framework for Assessing Family Engagement. Palo Alto: Lucile Packard Foundation for Children's Health. 12. Stanford Children's Health. Parent Mentor Program. stanfordchildrens.org. Available at: http://www.stanfordchildrens.org/en/patient-family-resources/parent-mentor-program. Accessed Engaging Families in Improving the Health Care System for Children with Special Health Care Needs Lucile Packard Foundation for Children’s Health August 15, 2017. 13. Family Resource Centers Network of California. Available at: frcnca.org. Accessed October 17, 2017. 14. O'Sullivan M. It Takes A Family: An Analysis of Family Participation in Policymaking for Public Programs Serving Children with Special Health Care Needs in California. Palo Alto: Lucile Packard Foundation for Children's Health; 2014. 15. Slaton AE, Cecil CW, Lambert LE, King T, Pearson MM. What a Difference Family-Driven Makes: Stories of Success and Lessons Learned. American Journal of Community Psychology. 2012;49(3- 4):538-545. 16. Smith M, Saunders R, Stuckhardt L. Engaging Patients, Families, and Communities. Best Care at Lower Cost: The Path to Continuously Learning Health Care in America. Washington DC: National Academies Press (US); 2013. 17. Child and Adolescent Health Measurement Initiative. Children with Special Health Care Needs in California: A Profile of Key Issues. Palo Alto: Lucile Packard Foundation for Children's Health; 2013. 18. Assocation of Maternal and Child Health Programs. Standards for Systems of Care for Children and Youth with Special Health Care Needs. Palo Alto: Lucile Packard Foundation for Children's Health; 2014. 19. Association of Maternal & Child Health Programs. Family Engagement and Leadership in Title V Programs. Palo Alto: Lucile Packard Foundation for Children's Health; 2016. 20. Wayman KI. A Guide to Establishing Effective Hospital Family Advisory Councils. Palo Alto: Lucile Packard Foundation for Children's Health; 2015. 21. Wayman KI. Creating and Sustaining Effective Hospital Family Advisory Councils. Palo Alto: Lucile Packard Foundation for Children's Health; 2015. 22. Gray A, Duenas J, Daar Watson J. Project Leadership: Effecting Change, One Parent at a Time. Palo Alto: Lucile Packard Foundation for Children's Health; 2015. 23. Lucile Packard Foundation for Children's Health. Network Newsletters. LPFCH.org. Available at: https://www.lpfch.org/cshcn/advocacy/network-newsletters. Accessed July 10, 2017. 24. California State Senate. Media Archive- Senate Select Committee on Children with Special Needs. Senate.CA.gov. Available at: http://senate.ca.gov/media- 5 Engaging Families in Improving the Health Care System for Children with Special Health Care Needs www.lpfch.org/cshcn archive?title=senate+select+committee+on+children+with+special+needs&startdate=&enddate. Accessed October 17, 2017. ABOUT THE FOUNDATION: The Lucile Packard Foundation for Children’s Health works in alignment with Lucile Packard Children’s Hospital and the child health programs of Stanford University. The mission of the Foundation is to elevate the priority of children’s health care through leadership and direct investment. The Foundation is a public charity, founded in 1997. The Foundation encourages dissemination of its publications. A complete list of publications is available at http://www.lpfch.org/publications CONTACT: The Lucile Packard Foundation for Children’s Health, 400 Hamilton Avenue, Suite 340, Palo Alto, CA 94301 cshcn@lpfch.org (650) 497-8365 Engaging Families in Improving the Health Care System for Children with Special Health Care Needs