1. Patient and Family Engagement Recruiting for Patient Family Advisory Councils and a Review of Patient and Provider Engagement Tools January 8, 2014

2. Avoid Readmissions Through Collaboration The collaborative is supported by Cynosure Health and the California Quality Collaborative (CQC), leading improvement experts in California, and is generously funded by the Gordon and Betty Moore Foundation.

3. Overview Goal Goal – Reduce 30 and 90 day all cause readmissions by 30% by the end of 2013. (30/30/2013) Successes Successes – >4000 readmissions prevented and > 39 million dollars saved – ARC 2 Strategies Strategies – Building a collaborative community with a shared goal – Sharing evidence-based transitions of care models and implementation practices In-person learning sessions and webinars – On-site technical assistance – Data collection and monitoring www.avoidreadmissions.com

4. ARC 2 Participating Hospitals San Francisco Bay Area Alameda County Medical Center Alta Bates Medical Center California Pacific Medical Center Chinese Hospital Eden Medical Center El Camino Hospital Marin General Hospital Mills Peninsula Hospital O'Connor Hospital Saint Francis Memorial Hospital San Francisco General Hospital Medical Center Santa Clara Valley Medical Center Sequoia Hospital Seton Medical Center Stanford Hospital St. Mary’s Medical Center St. Rose Hospital UCSF Medical Center VA Medical Center San Francisco VA Palo Alto Health Care System ValleyCare Health System Washington Hospital Healthcare System Beyond the Bay Lodi Memorial Hospital Saint Francis, Lynwood Saint Vincent Hospital Sutter Delta Medical Center

5. Speakers Libby Hoy, Founder/CEO Patient & Family Centered Care Partners Julia Hallisy, DDS, Founder and President The Empowered Patient Coalition

6. Engaging Patients & Families from the Bedside to the Boardroom Libby Hoy, Patient & Family Advisor Founder, PFCC Partners Copyright 2013, Patient & Family Centered Care Partners, Inc. ® All rights reserved ®

7. Our Story Fear Shame Disrespect Failure But it is also a story of…. Partnership Respect Collaboration Compassion Empowerment

8. My mission To share our experiences in partnership and true collaboration so that together we can improve healthcare for all of us.

9. Patient & Family Centered Care Partners PFCC Partners is committed to building a community of healthcare providers, administrators, ancillary staff, patients and families coming together to define best practices, share resources, connect with peers and access support and tools for integrating PFCC into their organizations. PFCC Partners recognizes that the quality of healthcare outcomes is improved when the expertise of the healthcare providers is partnered with the experience of the patients and families. From the bedside to the boardroom, patient & family centered care is about partnering to design policies, programs and individual care plans for the best possible outcomes.

10. Why Do We Engage Patients & Families?

11. Patient & Family Advisor Patient & family advisors serve in a variety of healthcare settings sharing their personal stories to represent all patients & families in providing an educated perspective of care by bringing authenticity, empowerment, respect and inspiration to the design and delivery of healthcare systems. Patient & Family Advisor roles include partner, educator, speaker, listener, advocate, collaborator and leader, ensuring the focus of healthcare is centered on the patient & the family. Collaboratively written by Patient Family Advisors assembled by the IHI at the 2012 IHI Forum, Orlando FL

12. Setting the Table for Success Direct tie to strategic plan of the organization Senior leadership at the table PFAC is reflective of the population the organization serves Managers must be on board Culture of Continuous Improvement Implied Importance Recognize Patients & Family members as a resource Top Down Buy In -Philosophically -Programmatically -Financially Dedicated Staff Resources

13. 5 Gateways Setting the Table in the OrganizationRecruiting Patient & Family Advisors Training & Orientation of Patient & Family Advisors First MeetingsSustainability Practices

14. FAQ’s What is the right number of PFA’s? No perfect number, though majority +/- 12 Can staff serve in the role of PFA’s? Not recommended, PFA’s are in the room with a singular purpose How many staff members serve on PFAC’s Recommend 30% of total, including leadership no more then 50% Should PFA’s go through Volunteer Orientation? Ultimately, YES What about confidentiality? Patients who complete applications are sharing their experiences voluntarily. PFA’s should sign confidentiality agreement with the organization.

15. What Does Success Look Like? PFA’s receive training specific to the role PFAC agendas are created in partnership PFA’s are seamless in the fabric of the organization, rather then ‘heros’ or revered guests Every program, policy & design process involves PFA’s from the outset Every staff person in the organization recognizes the value of PFAC & supports it’s activities Senior leaders support the sustainability of the PFAC and recognize it as a critical component for Improvement efforts Robust structure for PFAC integration

16. Strategies for Partnering Open ended questions to clarify families’ understanding Provide choices Provide unbiased information Use interpreters Use simple language Patience Sit down, slow down as much as possible Assess the patient and families understanding of the current medical condition Offer family comforts and resources TALK about your concerns Empower & guide the patient & families in their desire for information and knowledge The Teach Back Method http://www.nchealthliteracy.org/toolkit/tool5.pdf

17. What Does Success Look Like? Calm Comfortable Confidant Copyright 2013 PFCC Partners, Inc. ®

18. Contact www.pfccpartners.com Libby@pfccpartners.com 5199 E. Pacific Coast Hwy, Suite 306 Long Beach CA 90804 562.961.1100 ®

19. The Empowered Patient Coalition Presented by Dr. Julia Hallisy Founder and President The Empowered Patient Coalition © 2014 Engaging and Empowering Patients, Families, and Providers

20. About Us A consumer and advocate- led non-profit organization that works to inform, engage, and empower patients, family members, caregivers, and providers. About Julia Hallisy: Mother, Wife, Dentist, Author, Patient Advocate, Former Hospital Volunteer Our website is optimized for mobile devices

21. My Inspiration Katherine “Kate” Hallisy 1989-2000

22. Life-Threatening Illness & Hospital Infection Cancer diagnosis, chemotherapy, radiation, loss of right eye Several years later, a 30-minute biopsy for recurrent lesion in leg 48 hours later – rash, fever, lethargy, kidney failure PICU on life support for 7 weeks with sepsis, ARDS C-diff, bed sore, ICU psychosis, PTSD Permanent heart and lung damage Delay in limb-sparing surgery = above-the-knee amputation Post-amputation wound infection and severe phantom pain Months of physical therapy Financial cost = $396,000 in 1997 dollars

23. Steps to Patient Engagement Establish Why Patients Should Care about Engaging Model Effective Communication by Patients & Providers Provide Tools to Inform, Engage, and Even Inspire Measure Effectiveness and Share Successes Ongoing Support, Follow-up, & Momentum © 2014

24. Coordinated Care Involves Engaging Patients & Families Many patients do not want to be passive recipients Patients now expect to be participants* Patient expectations are increasing faster than provider usage of educational materials and technology Now is the time to move forward on patient educational materials, tools, resources, and support. Please do not let the lack of a formal patient advisory council delay your progress! *Accenture Consumer Survey on Patient Engagement – December, 2013 © 2014

25. Making Engagement a Reality Educational tools in many forms – ask patients if they have a preference. Patients may not know which form they prefer until they see them and use them. Establish a patient library, resource area, or educational portal as the “go-to” place for patients and providers. Innovative collaboration between advocates and providers and continuation of ARC successes. Pilot studies to assess patient resources. Please partner with us in this area. We are here to help! © 2014

26. What We Do – Tools, Resources, and Support © 2013

27. Empowered Patient Apps © 2014

28. Challenges– Communication, Speaking Up, and Being Prepared Patients struggle to ask any questions at all Patients are not focused, organized, or concise Patients may have a long list of vague complaints Patients ask the “wrong” kind of questions Patients worry about being labeled “difficult” Patients bring up concerns at the very end of the visit © 2013 Source: Consumer Reports

29. A Solution -Empowered Patient® SBAR Forms Communication tools to help patients organize their thoughts, observations, and questions. Script the behavior you are seeking! © 2013 Easy to use Patients acquire skills Builds confidence Organized and concise Saves time Reduces stress Improves communication

30. A Solution- Preparing for Visits Stress the importance and value of being prepared for visits. Ask patients to use a structured form including three main questions. Use wait times to complete as much of the form as the patient wants. © 2012

31. A Solution - Engaging Patients in the Hospital Patient and family rounds Use of whiteboards Patient advisory councils, committees, and board memberships Offer a written or electronic patient journal Encourage the use of a patient progress sheet © 2012

32. A Solution – Interactive Visit Summaries Inform patients that it is helpful to write down questions and goals Patient goals are listed on the visit summary Start with one or two simple, achievable, and measurable goals Consider having patients fill in parts (or all!) of the visit summary © 2013

33. Empowered Patient Decision Support App 1. I feel I have the basic facts I need to make this decision: Yes   I know if my diagnosis is confirmed  I know the average length of treatment and recovery time  I know if having this treatment may prevent me from having other treatments later No   I need more time/information from my doctor or nurse  I want a second opinion/information from a different doctor or nurse  I need help understanding and learning about my condition  I want to look up standard tests and treatments  I want to know about the success rate of the suggested treatment  I want to talk to other patients who have what I have (online communities, in- person support groups, or other patients suggested by my providers) ©2012

34. Helping Patients Change Their Role Patients often need permission and role modeling from their providers to begin to participate in meaningful ways Be clear about the goal- “We are going to be sure you feel comfortable speaking to your care team.” Refer to patients as team members – involved, empowered, valued Appeal to altruism – “help us improve health care for everyone” Have expectations that patients communicate clearly and prepare for visits and hospitalization and provide tools Use wait times for patients who are not prepared in advance to set their agenda Give “information and action prescriptions” and follow-up at next visit Script your critical moves! © 2014

35. Challenge – Discharge, Home Care, and Preventing Readmissions A clear goal – we want you to heal well and not come back to the hospital Explain that discharge is a transition – and it can be challenging work Discharge instructions, discharge summary, medication lists and reconciliation Who will be helping at home? Assess their health, skill, and availability Complications to watch for and a phone number to call Teach patients to recognize signs of wound or SSI and what action to take Improving the healing environment – nutrition, stress, sleep, support… Patients know when to return for visits, which doctor to see, appointment is scheduled, confirmed, and there is follow-up Home visit or calls Investigate volunteer options – California Pacific HELP program is an example!

36. A Solution – Discharge and Home Care Checklists and Fact Sheets © 2013

37. Focus on a strong beginning and a strong finish and just get going 1. Decide on an initial focus and direction – what problem needs solving in your institution? Where are patients and staff struggling? 2. Choose one or two tools to pilot as a first step, choose a department and champions to help implement and measure. 3. Baby steps are a good start but should be bigger and bolder each time. Meeting resistance is often the result of not having a clear starting point and goal © 2014

38. Use Creates Impact! We want to help California hospitals create impact by: Assisting you in choosing one or two simple and measurable tools Helping you pilot innovative tools to inform and engage patients Working with your institution to be a leader in patient engagement Moving beyond discussion and policy and actually taking steps to achieve front-lines patient engagement © 2014

39. Things Can Be Different Patients have skills and confidence to be part of the team Patients communicate effectively with SBAR scripts and coaching Patients prepare for visits in advance and help with visit summaries Patient and family involved in the daily hospital care plan Patients engage and self-manage as true partners

40. What Would Katherine Say? We are at a fork in the road There is no middle ground People are suffering and dying We can, and must, do more Why is it taking so long? You can make it better Take the first step!

41. Informing Patients Building Partnerships www.EmpoweredPatientCoalition.org Free Hospital Guide Factsheets and Checklists Free Patient Journal Apps Patient Safety Training Sign up for our Newsletter

42. Contact Julia@EmpoweredPatientCoalition.org Tel. 415-681-1011 Twitter@EPCoalition Facebook –The Empowered Patient Coalition LinkedIn – Julia Hallisywww.EmpoweredPatientCoalition.org