Applying the Principles of Patient Family Centered Care

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Applying the Principles of Patient & Family Centered Care to Advocacy Efforts Libby Hoy,

Applying the Principles of Patient & Family Centered Care to Advocacy Efforts Libby Hoy, Founder, PFCC Partners Copyright 2010 PFCC Partners, Inc ®

PFCC Partners Organization Patient & Family Care Provi der ® Copyright 2010 PFCC Partners,

PFCC Partners Organization Patient & Family Care Provi der ® Copyright 2010 PFCC Partners, Inc ®

PFCC Partners Mission Bringing Patients & Families together with healthcare administrators and providers to

PFCC Partners Mission Bringing Patients & Families together with healthcare administrators and providers to partner together to improve the quality, safety and experience of care. Copyright 2010 PFCC Partners, Inc ®

Partnership Across the Care Continuum Caregiving Organizational Level Relationship Culturally Engaged Competent PFAC Compassionate

Partnership Across the Care Continuum Caregiving Organizational Level Relationship Culturally Engaged Competent PFAC Compassionate E-Advisors Individualized Quality Cmte Engaged Safety Cmte Respect Patient Empowered Experience Copyright 2010 PFCC Partners, Inc ®

Impact on Patient-Provider Relationship • Sets the table for collaboration • Increases the communication

Impact on Patient-Provider Relationship • Sets the table for collaboration • Increases the communication • Infuses the relationship with accountability • Assures care plan will work within the family structure • Empowered families more likely to share challenges • Avoids Learned Helplessness Copyright 2010 PFCC Partners, Inc ®

Copyright 2010 PFCC Partners, Inc ®

Copyright 2010 PFCC Partners, Inc ®

Partnership Across the Organization Experience Foundation Quality Patients & Families Legislative Advocacy Safety Copyright

Partnership Across the Organization Experience Foundation Quality Patients & Families Legislative Advocacy Safety Copyright 2010 PFCC Partners, Inc ®

Advocacy The act of pleading or arguing in favor of something, such as a

Advocacy The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support Copyright 2010 PFCC Partners, Inc ®

Case Studies of Advocacy Partnerships 1. Newborn Screening 2. Approval for Construction of a

Case Studies of Advocacy Partnerships 1. Newborn Screening 2. Approval for Construction of a new hospital 3. Proposition 61 4. Changing the System of Care 5. Family Voices Health Summit Copyright 2010 PFCC Partners, Inc ®

Partnership for Changes in Newborn Screening Legislative Priority: Add Cystic Fibrosis to Newborn Screening

Partnership for Changes in Newborn Screening Legislative Priority: Add Cystic Fibrosis to Newborn Screening Strategy: Congressional Testimony Plan: Identified a Pulmonologist and the parent of two children with CF, one prenatally diagnosed to share the clinical pathway of a child treated from birth and a child diagnosed at age 2 Copyright 2010 PFCC Partners, Inc ®

Partnership for Building Permits Legislative Priority: Obtain approval for all building permits from City

Partnership for Building Permits Legislative Priority: Obtain approval for all building permits from City Council for new children’s hospital Strategy: 1. Parent/ Professional Teams visit with City Council members from their district. 2. Parent/Patient/Professional Team testify at City Council meeting Plan Healthcare Administrator, Patient, Family & Physician advocating for need for additional beds to adequately serve the needs of children in our community. Copyright 2010 PFCC Partners, Inc ®

Partnership for Proposition 61 Legislative Priority: Passage of Proposition 61 to provide funding for

Partnership for Proposition 61 Legislative Priority: Passage of Proposition 61 to provide funding for expansion of the 8 children’s hospitals in California Strategy: Mobilize the Advocacy Network to promote passage of Prop 61 Plan: Developed Fact Sheets and buttons to distribute to the +150 patients on the E-Advocacy Network and repeatedly distributed with the suggestion of taking it to community activities. Copyright 2010 PFCC Partners, Inc ®

Partnership for Systems Change Legislative Priority: Integrate Patient & Family Centered Care into the

Partnership for Systems Change Legislative Priority: Integrate Patient & Family Centered Care into the culture of the services provided by California Children’s Services, Los Angeles County Strategy: On board patient & family representation to the organization’s Family Centered Care Committee. Plan: Patient & Family member representation ensures the perspective & needs of the patients served are integrated into the design, implementation and evaluation of services. Copyright 2010 PFCC Partners, Inc ®

Partnership for Children with Special Health Care Needs Legislative Priority: 1. Bring the face

Partnership for Children with Special Health Care Needs Legislative Priority: 1. Bring the face of children with special health care needs to the legislators 2. Create an educated network of family partners for Advocacy Strategy: 2 day Education and training event Plan: Family Voices Annual Health Summit Copyright 2010 PFCC Partners, Inc ®

Where do we start? 1. Build Your Legislative Action Network 2. Provide legislative advocacy

Where do we start? 1. Build Your Legislative Action Network 2. Provide legislative advocacy Training 3. Identify Legislative Priorities 3. Build Legislative Action Plan 4. Engage your patients & Families Copyright 2010 PFCC Partners, Inc ®

1. Building the Advocacy Network Recruit materials distributed Website Membership Use online resources such

1. Building the Advocacy Network Recruit materials distributed Website Membership Use online resources such as Google groups, Groupsite and others to connect and reconnect Provide options to patients & families for involvement 1. Sign a petition 2. Sending a letter 3. Making a phone call 4. Attend a rally 5. Making a presentation 6. Travelling to Sacramento or Washington DC to present Copyright 2010 PFCC Partners, Inc ®

2. Provide Legislative Advocacy Training • I’m Just a Bill • Telling Your Story

2. Provide Legislative Advocacy Training • I’m Just a Bill • Telling Your Story Training • Advocacy Activities • Offer Connections • Who do you know? • Identify Representatives Copyright 2010 PFCC Partners, Inc ®

3. Identify Legislative Priorities • Include your patients & families in this process •

3. Identify Legislative Priorities • Include your patients & families in this process • What are their most pressing needs? What are their biggest challenges? • Search for pending legislation that may address one or more of these issues • Search for legislation that may require support from your organization • Sign up for legislative updates from National organization Copyright 2010 PFCC Partners, Inc ®

3. Build a Legislative Action Plan Strategy • Staff Member receives Action Item Legislative

3. Build a Legislative Action Plan Strategy • Staff Member receives Action Item Legislative Priority • Identify method of advocacy • Preparation specific to issue and support provided Plan Copyright 2010 PFCC Partners, Inc ®

5. Engage Your Patients & Families! Often Openly Meaningfully Copyright 2010 PFCC Partners, Inc

5. Engage Your Patients & Families! Often Openly Meaningfully Copyright 2010 PFCC Partners, Inc ®

Resources Family Voices CA www. familyvoicesca. org Lucille Packard Foundation for Children’s Health www.

Resources Family Voices CA www. familyvoicesca. org Lucille Packard Foundation for Children’s Health www. lpfch. org Legislative Analyst Center http: //www. lao. ca. gov Catalyst Center http: //hdwg. org/catalyst/ Copyright 2010 PFCC Partners, Inc ®

THANK YOU!

THANK YOU!

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