1. Patient Advisory Councils Words of Wisdom from Physicians and Practice Coaches in Urban and Rural Primary Care. Emilie Buscaj, MPH, PCMH CCE Patient Centered Medical Home Recognition Manager HealthTeamWorks Aimee Falardeau, MD Physician and Fellow Instructor University of Colorado, AF Williams Family Medicine Center Christin Sutter Quality Improvement Coach High Plains Research Network

2. Disclosure Statement Emilie Buscaj, Aimee Falardeau, Christin Sutter I have no financial investments and receive no funding from any of the private companies talked about in this presentation. No off label medication use will be discussed.

3. Purpose Today Why talk about Patient Advisory Councils? Help inform practices that are interested in forming patient advisory groups but might not know where to start or what group could do. We believe patient and community members’ involvement with primary care is important and want to inspire some of you to get engaged!

4. Where are you with involving patients in Quality Improvement?

5. What is a Patient Advisory Group? Serves as resource to administration and staff of the organization Promotes improved relationships Provides a vehicle for communication and to understand miscommunications Provides a venue for patients to provide input, recommendations, development of new projects, and help implement sustainable change Provides opportunities for staff to listen and a safe venue for patients to express needs and concerns Developed by Marlene Fondrick and Beverley H. Johnson, Institute for Patient- and Family-Centered Care, Bethesda, MD, 1998. Revised 2002.

6. WHAT BENEFIT WILL COME FROM A PRACTICE ENGAGING PATIENTS IN QI?

7. Benefits of patient engagement in an advisory group Provides a mechanism for receiving and responding to input Results in more efficient planning Leads to increased understanding and cooperation Promotes respectful, effective partnerships Offers a forum for developing creative, cost-effective solutions to problems and challenges Supplies a link between the practice, its surrounding community, and community groups Provides increased emotional support and access to information Developed by Marlene Fondrick and Beverley H. Johnson, Institute for Patient- and Family-Centered Care, Bethesda, MD, 1998. Revised 2002.

8. Why Patient Advisory Groups Matter Identifying priority health topics or processes Vetting project ideas presented by clinic team Developing/editing surveys and questionnaires Developing/editing print materials for patients/community Regardless of project: Provide fresh ideas! Diverse perspectives and knowledge Credibility to work being done in region/at practice

9. HOW MANY AND WHO ARE IN AN ADVISORY GROUP?

10. How to: Recruitment of Advisors Focus Groups Feedback without an established advisory council Diverse perspective Used to identify patients for board Focus groups – with patients that don’t speak English and Spanish Patient Rounding in the Waiting Room Advertising Provider/Staff Recommendations Key Informant Interviews External Referrals Community Outreach Workers Community Organization and Support Group Leaders Community Health Education Classes

11. HOW DO YOU IDENTIFY SUCCESSFUL MEMBERS? See the big picture Have ability to listen and hear other view points Do not push personal, professional, or political agendas Have a sense of humor Have to ability to connect with people Can learn and will step outside of comfort zone Are willing to share their opinions and thoughts

12. Things to consider: Meetings and Logistics Group facilitator – who leads and communicate with the advisors Bylaws – patient expectations Connection to practice leadership Frequency, length and location Compensation? For travel, child care, food (a must!), etc. Share stories Focused agendas but time to really learn and talk Providing minutes and action item updates

13. WHAT ADVICE DO YOU HAVE REGARDING THE NUTS AND BOLTS?

14. Starting a Patient Advisory Group: Orientation/1 st Meeting Introductions and the sharing of personal and family stories in the healthcare system Review the vision and goals of the organization; Describe how the board its fits within the organization’s structure Develop roles and responsibilities of members Review HIPAA and expectations for honoring privacy and confidentiality Expectations for the board and attendance

15. WHAT ACTIVITIES DO YOU RECOMMEND?  Conduct a “walk-about”... take pictures and record comments.  Ask advisors to envision the ideal experience in the hospital/clinic/practice.  Include advisors in an assessment process of clinic/practice and its policies, programs, practices, and facilities.  Invite advisors to review patient survey data and participate in the process of developing responsive changes and evaluating improvement.  Involve advisors in a restructuring/rebuilding/rethinking project.

16. More ideas….  Appoint patients and families as members of quality improvement teams.  Appoint several advisors to design planning teams for renovation and new construction projects.  Invite advisors to serve on the patient education committee.  Train and involve advisors to co-facilitate peer support or health education groups.  Ask advisors to assist in developing the website and educational videos for the clinic or practice.  Ask advisors to recruit and interview new advisors

17. LESSONS LEARNED Create common language Importance of defining group’s mission upfront Importance of leadership Sustainability No “one size fits all” way to do this – Whew!

18. Questions? Thank you.

19. Resources and Additional Information Reprinted information with permission from: Institute for Patient- and Family-Centered Care (www.ipfcc.org)www.ipfcc.org 6917 Arlington Road, Suite 309 Bethesda, MD 20814 Phone 301-652-0281 Fax 301-652-0186 Tools/Checklists http://www.ipfcc.org/tools/downloads-tools.html Research Articles http://www.ipfcc.org/advance/supporting.html How to Videos http://www.ipfcc.org/advance/topics/videos.html