Partnering with Patients: A Bed’s Eye View

1. Tiffany Christensen Partnering with Patients: A Bed’s Eye View

2. 4 PFCC Guiding Principles • Respect and dignity. Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs and cultural backgrounds are incorporated into the planning and delivery of care. • Information Sharing. Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete, and accurate information in order to effectively participate in care and decision-making. • Participation. Patients and families are encouraged and supported in participating in care and decision-making at the level they choose. • Collaboration. Patients and families are also included on an institution-wide basis. Health care leaders collaborate with patients and families in policy and program development, implementation, and evaluation; in health care facility design; and in professional education, as well as in the delivery of care.

3. Introduction: The 5 W’s • Who? Dedicated volunteers who want to help improve care across Duke Medicine • What? The Duke PAC has a mission to provide patients and family perspectives to Duke Medicine with the goal of enhancing patient-centered care; to respect the needs of the human spirit; and to bring together patients, their families, and their caregivers as partners in healing, education, and research • Why? 1. Provide opportunity for patients and families to actively engage in efforts to improve the patient/family experience. 2. Provide opportunity for Duke to get real patient/family feedback from people who have “been there” but are not currently in crisis, have been properly trained to use experiences as a learning tool and have some understanding of the complexities of change • Where? Across Duke Medicine! At the system level (DUHS), hospitals, ambulatory care, primary care, home health and hospice, health profession schools • When? NOW

4. Defining Patient Experience

5. What is Patient/Family Centered Care (PFCC)? Patient- and family-centered care is an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families. It redefines the relationships in health care. ~Institute for Patient and Family Centered Care

6. PFCC What it is: • It is no longer assuming to understand the patient/family experience but actually seeking information directly • It is ACTION based on the patient/family experience • It is making choices WITH patients and families, not FOR patients and families What it isn’t: • A Concierge Service • A good bedside manner • Smiling and being nice • Removal of Boundaries

7. PFCC and PAC: The Link • PFCC and Patient Satisfaction have become a focus for most hospitals in the country • Without the voice of experience, improvement efforts will be based on staff perceptions and may not ultimately benefit the patients served • A PAC enables staff to hear directly the areas of concern and suggestions for how to change

8. The purpose of a PAC • - to identify the central concerns of the patient throughout the health system • - to be a catalyst in changing our culture toward patient centered care • - to advise on programs and policies from a patient perspective • - to identify system level issues that affect patient care • - to improve customer satisfaction and patient loyalty • - to provide a link between the Duke Medical system and the broader community • - to participate in the education of health care professionals

9. History of the DUHS PAC • Established in 2005 by Dr. Victor Dzau, Chancellor of Health Affairs, patient forum to advise DUHS on patient centered care initiatives and culture at Duke University Health System • Subcommittee of the Patient Safety & Clinical Quality Executive Committee; Minutes and activities reviewed by Patient Safety and Clinical Quality Committee of the DUHS Board of Directors • Represents vision and goals of DUHS Core Value and priorities of the Five Year Quality and Patient Safety Plan • “To provide every patient with the best healthcare experience”

10. PAC Lingo • PAC: Patient Advocacy (or Advisory) Council • DUHS PAC: Duke University Health System Patient Advocacy Council • PFAC: Patient and Family Advisory Council (Commonly used in reference to the Children’s Hospital Council) • LPAC: Means Local PAC and is the general name for non-specific PAC groups • PEOT: The health system leadership council comprised of staff providers and leadership dedicated to improving patient care through PFCC strategies

11. Composition • All volunteer members • Community members must far outnumber staff members • Seek diversity in gender, background, age and race • Example: DUHS PAC Membership - 3 year terms with option to renew for second term • Example: DUHS PAC, Dr. Karen Frush, Chief Patient Safety Officer, and Patient/Family Co-Chair • Visitors sit on outside parameter of room while members sit at conference table • Leadership visits as often as schedule permits in order to provide feedback, encouragement and thanks

12. The Executive Team • Patient Advocacy Council (PAC) Executive (Leadership) Committee: Co-Chairs, Chair-Elect, Past-Chair, Staff Chair and other key stakeholders (ex. Chancellor’s Chief of Staff) • Meets monthly 2 weeks before DUHS PAC scheduled meeting • Discusses upcoming agenda, development, any areas of concern, current project’s status, holds interviews

13. “Passing the Baton” Ceremony 2011

14. Standard Structure for all Duke PACs • Standard Screening, Interview, and Approval Process • Duke Health System Volunteer Orientation and Training • Confidentiality , HIPAA, and Conflict of Interest • PAC Governance • Monthly 2-hour Council Meetings (varying in time of day and location but meals are provided) • Special topic/program • Council Business • Focus Group Opportunities • Project Opportunities • Committee Participation • DUHS PAC Website on Dukehealth.org

16. The role of leadership • Without engaged leadership, this becomes a grass-roots effort and can not make the desired impact • Invite leadership to (occasionally) attend meetings to keep them interested in the work of the PAC and to help members see their efforts are being recognized • When possible, hold a yearly meeting with major leaders to discuss their concerns and where they would like to see the PAC focus energy

17. Participation:Highlights of PAC Special Projects and Events“Over 2500 volunteer hours in the past three years” • Developed Speaker’s Bureau to share patient’s stories at employee/nursing orientation • Patient Safety Intercession for Second-Year Medical Students • Annual DUHS Safety & Quality Conference (poster session, workshop) • Consulting on “Condition H” programs • Duke Medical Student Interviews • Chancellor’s Community Health Advisory Meeting and Leadership Retreats • Patient Shadowing in Ambulatory Surgery

18. Health Care Decisions Day- 2011-2012 • Scheduled during National Patient Advocacy Week (April) • Information booths near the cafeteria at each hospital • Over 100 advance care planning packets (w/ HCPOA forms) distributed • Lunch Improv and video launch for patients, families and staff Sample of 2012 Videos: • http://www.dukehealth.org/health_library/video/advance-care-planning-crossroads • http://www.dukehealth.org/health_library/video/advance-care-planning-lost-voices

19. Highlights of PAC Special Projects and Events • Participated in national workshop sponsored by the Institute for Patient and Family Centered Care- “Hospitals and Communities Moving Forward with Patients and Family-Centered Care” in 2010 and 2012 • New building design for the New Cancer Center and Duke Pavilion, clinic and new building signage, way-finding and furniture selection • Billing letters templates • DUH medication safety-medication preparation signage • Holiday Resource Brochure for Patients and Families • TeamSTEPPS® Master Trainers and “TeamSTEPPS® for Patients” program (http://teamstepps.ahrq.gov)

20. Discussion: Projects and Events • New Cancer Center and DMP changes order for visitor recliners based on patient and family feedback • Discussion with Leadership leads to new Advance Care Planning teaching tools • DRH Chief Nursing Officer champions patient story review so that Speaker’s Bureau may thrive • TeamSTEPPS® Master Trainers and “TeamSTEPPS® for Patients” program (http://teamstepps.ahrq.gov)

21. Overview: Where We are Now • DUHS PAC • PFAC • OPAC (pilot) • Duke Hospital Advocates finding champions and laying groundwork for LPACs in a variety of areas—psych, ED, Surgery

22. Where We are Going • DUHS PAC as the “clearing house” and information hub • “Liaisons” on LPACs reporting back to DUHS PAC (as already established with PFAC) • Patient advocates identifying PAC champions within their units and helping to create a PAC specific to the needs of that area • Standardized LPACs throughout system • Bi-Annual Meetings with DUHS PAC and all LPACs present • National Training Center to share model and educate other hospitals about creating, growing and sustaining their own PAC network • Continue to build a partnership with PEOT: define and follow through

23. Patient Advocacy: Next Phase

24. For more information, please contact Tiffany Christensen attiffany.christensen@duke.edu