Patients and Families as Advisors: Opportunities and Practical Strategies for Success

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1 Patients and Families as Advisors: Opportunities and Practical Strategies for Success Patient- and Family-Centered Principles Why involve patients and families as advisors? People are treated with respect and dignity. Health care providers communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Individuals and families build on their strengths through participation in experiences that enhance control and independence. Collaboration among patients, families, and providers occurs in policy and program development and professional education, as well as in the delivery of care. Bring important perspectives. Teach how systems really work Keep staff honest and grounded in reality. Provide timely feedback and ideas. Inspire and energize staff. Lessen the burden on staff to fix the problems staff do not have to have all the answers. Bring connections with the community. Offer an opportunity to give back. Family HealthCare Center, Fargo, ND Creating a Patient Advisory Council, developing the Center s website, and planning, implementation, and evaluating group visits. Patient and family advisors at the Ocean Park Health Center, San Francisco, CA 1

2 Ocean Park Health Center San Francisco, CA Patient and family advisors planned the walk and talk series. Leadership is KEY... The Patient Advisory Council members have been enthusiastic, and interested in improving care of patients and outreaching to the community. Each time I attend their meetings, their energy and passion revitalizes me and helps me to remember the reasons for which we are all here: to serve our patients. Lisa Golden, MD, Medical Director Ocean Park Health Center, San Francisco, CA Humboldt Del Norte IPA, Eureka, CA Skyline Internal Medicine Clinic Denver CO This patient advisor participated on a QI team, taught classes in the Healthier Living Series, and trained peer support group facilitators. Among the innovations that this Kaiser primary care clinic has implemented in partnership with patients and families are: Setting aside four 10-minute time slots in a physician s daily schedule for patient phone visits; A Patient Advisor Planning for a number of same day appointments so patients can come in on the day they call; and Providing a written a copy of the After Visit Summary to the patient as they leave the Clinic. Children s Hospitals and Clinics of Minnesota Minneapolis and St. Paul, MN British Columbia Children s Hospital Vancouver, BC Manual and Study Guide for Families Establishing mutual trust Getting and giving quality information Making decisions together with confidence Negotiating differences Managing emotions during health care encounters 2

3 Brown University Family Care Center, Providence RI Palo Alto Medical Foundation Palo Alto, CA Diabetes Newsletter Patient and Family Advisory Council participated in the development of this newsletter. Working in a team with our Patient Advisors has made me much more aware of the importance of working as a team with all my patients. This increased emphasis on partnering with my patients in my daily patient interactions has truly enriched both my professional life and my personal life. I thank the NHP project, our PAMF NHP team, and especially our Patient Advisors for giving me this much needed and unexpected gift. ~ Dr. Jay Schlumpberger, Family Medicine University of Washington Medical Center Seattle, WA Iowa Health System Des Moines, IA Health Promotion, Disease Prevention Kidney Early Education Project A collaborative program developed with patients, who have experienced dialysis and transplants, to assist other patients learn ways to delay dialysis treatment. The co-chair of the Iowa Health System s Patient Safety Committee is a man who learned to read at the age of 63. Medical Home Quality Improvement Christine Abbott, a patient advisor... participated in a learning call on selfmanagement support for New Health Partnerships. She is now involved in a project to develop an ephr for primary care. Pediatricians, family medicine physicians, and families working together to assure that all children have access to family-centered, culturally competent, coordinated, comprehensive primary care (Pediatrics, 2002). Quality improvement methodology Core team: MD, Nurse or Case Manager, and a parent. Rapid cycle improvement. Developing a system of care, tracking, and monitoring children with special needs

4 Minnesota Medical Home Learning Collaborative Bellin Clinic Marshfield, WI The process for the engagement of families: Each primary care practice team has at least two parents as members. Three times a year, all the teams (23 currently) gather for a learning session. Family-centered care and parent/professional collaboration skills are taught to new teams. Veteran parents help to train the new parent members. There is a state-level leadership team consisting of 12 to 15 members, mostly from the state government and academia, which meets monthly. Some members are physicians. Two parents serve on this leadership team. Bellin Clinic Marshfield, WI. Patient and Family Advisor Profiles What we are learning about creating effective patient and family partnerships... What we are learning about creating effective patient and family partnerships... Senior leaders that believe in the possibility and potential of patient and family partnerships enhances the likelihood of success. A designated staff liaison for collaborative endeavors facilitates the process. Patient and family involvement from the beginning of a project makes a difference. Successful recruitment strategies include direct invitation from clinicians and invitations from patients, families, and community outreach workers. Having meaningful, concrete projects to work on, especially at the beginning, is helpful. Up-front clarification of the roles for advisors and advisory groups helps prevent problems and reduce confusion. The most successful ambulatory, hospital, and nursing home programs: Have more than one advisor on a QI committee or task force. Offer many ways for patients and families to participate as advisors. 4

5 What we are learning about creating effective patient and family partnerships... It takes time to develop comfort and confidence with working in this new way and to achieve measurable results. Orientation and preparation for staff, physicians, and patients and families are essential. There may be bumps in the road, but... Its important to trust the process and to work on the process. Recruiting Patient and Family Advisors Ask staff and physicians for suggestions. Contact support groups. Call or send a mailing to patients and families. Ask patients/families during a clinic visit or during a hospital stay when appropriate. Post signs/brochures on bulletin boards in waiting areas. Place notices in the clinic s, hospital s, or nursing home s publications and on its Web site.! Peace Health Medical Group Eugene, OR A Recruiting Tool Qualities and Skills of Successful Patient and Family Advisors The ability to share personal experiences in ways that others can learn from them. The ability to see the bigger picture. Interested in more than one agenda issue. The ability to listen and hear other points of view. The ability to connect with people. A sense of humor. Recruiting Advisors Calgary Health Region, Alberta Promising Practices in Family/ Professional Collaboration Center for Effective Collaboration and Practice 5

6 Application Form and Database or Spread Sheet Orient and Prepare Patients, Families, Staff, and Physicians for Collaboration Mission, values, and priorities of the unit and the hospital. Speaking the language Medical and QI Jargon 101. Who s who in the organization and on committees. Day in the life of a physician, nurse, and/or dietician. Meeting attendance expectations. Logistical details: What to wear. Where to find food. Location of bathrooms. Transportation and parking. Child care. Stipends/reimbursement of expenses. Orienting Patient and Family Advisors (cont d) Roles and responsibilities Confidentiality and privacy HIPAA training Staff roles and responsibilities How to be an effective advisor How to ask questions What to do when there is disagreement Listening to and learning from other s viewpoints Thinking beyond your own experience Sharing a story and how to tell a negative story The impact of anger One patient or family advisor on a committee is NOT sufficient... Now the round table symbolizes our equality, while my fancy chair and golden crown signify that perhaps I m just a smack more equal. Conducting Collaborative Meetings Spend extra time on introductions. Begin some meetings with patient and family stories. Discuss the concept of collaboration explicitly at the beginning of a new endeavor and assess how it is working at the end of meetings. Avoid using jargon. Encourage the participation of family members, validating their role as committee members. 6

7 How to Get Started... How to Get Started (cont d)... Do a walkabout with several patients and families...take pictures and record comments. Ask patients and families to envision the ideal experience in your clinic or ambulatory center. Include patients and families in an assessment process of clinic or the ambulatory center. Appoint several patients and families to design planning teams for renovation and new construction projects. Invite patients and families to serve on the patient education committee. Ask patients and families to assist in developing the Web site for the clinic or ambulatory center. Appoint patients and families as members of QI teams. Sustaining Momentum and Keeping Advisors Involved Be engaged in meaningful work. Monitor and track the work. Measure changes and improvements. Ensure that patient and family advisors feel that they are making a difference, that people are listening to and addressing their issues. Recognize patient and family contributions and commitment. Evaluate the process along the way. Anticipate that plateaus may occur. Develop an Annual Report to Share the Story and Profile Benefits of Collaboration Include the number of: Patient and family advisors involved as well as their roles and activities. Clinical areas represented. Staff involved in collaborative endeavors. Issues addressed, products developed, classes taught, peer support programs coordinated, and other activities describe these issues, materials, and activities. Meetings held with community leaders, government agencies, potential funders, accreditors, others. Develop an Annual Report to Share the Story and Profile Benefits of Collaboration (cont ) Celebrate Your Success and Progress Summarize evaluations of classes taught to other patients, families, students, staff, physicians, new employees. Count the # of people who participate in classes. Capture quotes from participants in the classes. Summarize stories that they share. Take photographs (or scan) of products, activities, changes in physical spaces to share the story of improvement. Maintain a collection of all the products developed collaboratively. 7