FamilY Partnerships in a National Professional Membership Society IPFCC Conference July 25, 2016

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FamilY Partnerships in a National Professional Membership Society IPFCC Conference July 25, 2016 Carole Allen, MD, FAAP Betsy Anderson Julie Beckett Tamela Milan

SESSION OBJECTIVES Gain knowledge about the AAP FamilY Partnerships Network, and family engagement at a national level organization. Understand the opportunities and benefits associated with family engagement in a professional medical society. Review data on family engagement in pediatric practices.

The mission of the AAP is to attain optimal physical, mental and social health and well being for ALL infants, children, adolescents and young adults. To accomplish this mission, the Academy shall support the professional needs of its members.

66,000 Members 464 Employees $109 Million in Revenue 10 Districts 66 Chapters 28 Committees 51 Sections 11 Councils ABOUT THE AAP

AAP CORE PRINCIPLES FOR FAMILY ENGAGEMENT The family is the principal caregiver and the center of strength and support for children The AAP recognizes that perspectives and information provided by families, children, adolescents, and young adults are essential components of collaborative decision making in the delivery of high quality, safe, and compassionate care. Patients and their families are integral partners of the health care team. (full version can be found at www.aap.org/fpn)

HISTORY OF AAP FAMILY ENGAGEMENT 1990 s: AAP Medical Home Policy Statement and participation on some committees 2000: AAP and IPFCC joint statement on familycentered care first established 2007: Parent Advisory Group (PAG) established 2011: Annual Leadership Forum Resolution May 2014: AAP Board of Directors recommends to elevate PAG to be organization wide October 2014: PAG renamed FamilY Partnerships Network (FPN) Executive Committee.

FamilY Engagement at the AAP: FamilY Partnerships Network Julie Beckett

AAP FAMILY PARTNERSHIPS Who is in the Network? NETWORK Includes family/youth active in child health at national or state level, and those engaged in AAP initiatives Currently 45 members, primarily family advisors who are liaisons to AAP committees, initiatives, or chapters

AAP FAMILY PARTNERSHIPS NETWORK Support and Inform Youth/Families Provide orientation and mentorship to youth/family advisors involved in AAP committees or initiatives Develop avenues to share best practices and lessons learned related to family engagement Provide information and education to families/youth on AAP initiatives and AAP Agenda for Children

AAP FAMILY PARTNERSHIPS NETWORK Support and Inform Pediatricians and the AAP Help AAP think outside the box and provide missing perspectives Help the AAP standardize family engagement Lend support to AAP by collecting input from families and youth on strategic priority areas Review and provide family/youth perspective to AAP policy statements, reports, and initiatives

FAMILY PARTNERSHIPS NETWORK EXECUTIVE COMMITTEE Current participation includes 7 family members, including parents and youth Develop orientation and mentoring processes and materials for family/youth and the AAP Provides oversight/leadership to FamilY Partnerships Network Assists in generating active family/youth input, participation, and engagement with AAP activities and programs (e.g. Friends of Children pilot)

FPN EXECUTIVE COMMITTEE STRATEGIC PRIORITY AREAS Communications (Web site, Webinars, etc) Community Asset Mapping Legislative Advocacy Growing the Network Chapter Outreach Promoting Family Professional Partnerships in the Medical Home

FPN QUARTERLY WEBINARS Don t Forget the Dads: The Important Role of Fathers in Child and Family Health (archived at www.aap.org/fpn Future topics include: Youth engagement, Don t Forget the Dads Part 2, and Poverty/Social Determinants of Health

RECOGNIZING THE IMPORTANCE OF FATHER'S ROLES New AAP Clinical Report: Father s Roles in the Care and Development of Their Children: The Role of Pediatricians http://pediatrics.aappublications.org/content/early/ 2016/06/10/peds.2016 1128

AAP Bright Futures, Social Determinants of Health, and Family Engagement Tamela Milan

NEW BRIGHT FUTURES THEME ON SOCIAL DETERMINANTS OF HEALTH 4 th Edition to be released in early 2017 New theme on social determinants of health (SDOH) Maternal and Child Health programs are redesigning their programs around SDOH Collective Impact to engage stakeholders in certain communities around SDOH

FAMILY ENGAGEMENT IN BRIGHT FUTURES Family Pocket Guide PreSIPS2: The Preventive Services Improvement State Spread project is a state learning collaborative working to improve preventive health outcomes for children and families. Identifying family leaders Characteristics of a family leader Incentives for involvement in process

FAMILY ENGAGEMENT FROM A CONSUMER Empower families to join the practice not just as a patient but in an advisory role. Opportunities to gain skills that could lead to employment or other activities. Propose an event that gives them the notion of community engagement by bringing others in due to their knowledge of the community.

Family Engagement Data Carole Allen, MD, FAAP District 1 Chairperson, AAP Board of Directors

Longstanding survey of AAP members on pediatric topics 3 to 4 surveys conducted per year, randomized, representative sample Data are used to inform new AAP policies, programs, publications, and initiatives

Periodic Survey #79: Family Involvement in Practice 2011-2012 Methods Random sample, mailed survey to non retired U.S. AAP members Self reported data Response rate: N=1618; 59% Analyses limited to pediatricians providing primary care in office or clinic based ambulatory care settings. Residents excluded. N=572

QUESTIONS What methods do pediatricians use to learn about the needs and experiences of their patients/patient families? What practice characteristics are associated with greater family involvement?

Methods Pediatricians Did Not Use to Learn About Patients/Families Needs and Experiences (%) Do not plan to do Have not done, but plan to Conducted pt/family surveys on experiences of care 22 15 Received comments via suggestion box or other ad hoc method Solicited input via interview, meeting or focus group 34 48 12 13 Convened a patient/family advisory council 72 12 0 20 40 60 80 100 Source: AAP PS#79, 2011-12

YOU ARE MORE LIKELY TO HAVE CONDUCTED PATIENT/FAMILY SURVEY IF: Group practice (66%) or hospital/clinic based (74%) rather than solo/2 person practice (40%) Applied for family centered medical home recognition/accreditation (87% vs 60%)

YOU ARE MORE LIKELY TO HAVE OBTAINED COMMENTS THROUGH A SUGGESTION BOX IF: Group practice (54%) or hospital/clinic based (71%) rather than solo/2 person practice (34%) Applied for family centered medical home recognition/accreditation (67% vs 51%)

YOU ARE MORE LIKELY TO HAVE OBTAINED INPUT THROUGH A INTERVIEW, MEETING, OR FOCUS GROUP IF: Applied for family centered medical home recognition/accreditation (53% vs 37%)

YOU ARE MORE LIKELY TO HAVE CONVENED A PATIENT/FAMILY ADVISORY COUNCIL IF: Hospital/clinic based (31%) rather than group practice (12%) or solo/2 person practice (11%) Applied for family centered medical home recognition/accreditation (30% vs 14%) West region (24%) rather than rest of country (South,15%; MW, 13%; NE, 11%) High proportion of patients covered by public health insurance compared to fewer publicly insured patients (19% vs 13%)

SUMMARY Surveys of families and suggestion boxes are the most frequently used methods to get input from patients/families Majority of general pediatricians do not plan to convene an advisory council and nearly one half do not plan to conduct interviews Varies by some practice characteristics

Discussion: Engaging Families Opportunities, Benefits, Questions What we ve learned FPN; IPFCC Engaging: Dads, Youth Those with life challenges Those without a special needs perspective Those employed; those who volunteer

AAP RESOURCES OF INTEREST Patient and Family Centered Care and the Pediatrician s Role (2012) AAP & IPFCC http://pediatrics.aappublications.org/content/129/2/3 94 Fathers Roles in the Care and Development of Their Children: the Role of Pediatricians (2016) http://pediatrics.aappublications.org/content/pediatric s/early/2016/06/10/peds.2016 1128.full.pdf Poverty and Child Health in the United States (2016) http://pediatrics.aappublications.org/content/early/20 16/03/07/peds.2016 0339

For Additional Information: www.aap.org/fpn or skim@aap.org