1. Insert Title Here 1

2. Approaches to Developing and Sustaining Relationships with Patient Advisors and the Community Maret Felzien and Emilie Buscaj

3. Where are you on your journey with Patient Advisors?

4. Objectives By the end of this session participants will be able to:
Explore ways to prepare patient and family advisors to participate in primary care redesign.
Identify strategies and key barriers to sustaining patient advisors and family advisory councils.
Describe ways to build strong relationships with patient advisors and the community.

5. Purpose
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
Highlighted areas this presentation will cover
Developed by Marlene Fondrick and Beverley H. Johnson, Institute for Patient- and Family-Centered Care, Bethesda, MD,
1998. Revised 2002.

6. Benefits 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
Highlighted areas this presentation will cover
Developed by Marlene Fondrick and Beverley H. Johnson, Institute for Patient- and Family-Centered Care, Bethesda, MD,
1998. Revised 2002.

7. Reprint with Permission Only
Working successfully with others requires understanding of what we bring to the relationship…
…and, the ability to develop an understanding of what the other person brings to the relationship as well.
Importance of people be aware of their own cultural biases and what they bring to the table
And the importance of understanding who you are and what you bring to the relationship
How your experience influences what you bring
How the other person’s experience influences what they bring to the relationship as well.
Reprint with Permission Only
©HealthTeamWorks

8. Sustaining Advisory Councils

9. Sustaining Advisory Councils
Create relationship and partnership
Good bidirectional communication
Sense of teamwork
Show value
Advisors have a voice and they know they are heard
Input is acted upon
Input is integrated into bigger decisions
I might tell some HPRN stories here about how we struggled with our purpose and what we were supposed to do, that it took time to find our purpose.
For us, all of our work comes down to relationship.

10. Sustaining Advisory Councils
Meeting tips
Enjoyable AND productive
Agendas include time to
Reconnect
Review and report
Work on task(s) of the meeting
Reflect and decide next steps
Someone facilitates, listens for the nuggets and summarizes at the end
Next steps include: reading, thinking, collecting, asking , gathering, observing, talking
Explain how our meetings work and the format that we use… while different there are specifics that can be translated to others.
**Share copies of agendas
**Insert photo of a recent CLC meeting in Yuma…

11. Recent HPRN C.A.C. Meeting First Presbyterian Church, Yuma, CO

12. Improved Engagement

13. Improved Engagement - 1 Understanding Roles
Respect natural delineation of roles and responsibilities
Again, some examples form HPRN (Ned, Shirley, Sergio and me) image here??
Americo Bracho:
5 level of community recruits:
3 levels of advisory council recruits: technical, administrative and community—all are to keep each other accountable

14. Improved Engagement - 1 Understanding Roles
Be sensitive to comfort levels
Allow for growth
Levels of Leadership—5 & 3
America Bracho, MD and 20 year Community Activist in LA, Founder of Latino Health Access
Again, some examples form HPRN (Ned, Shirley, Sergio and me) image here??
Americo Bracho,
5 level of community recruits:
3 levels of advisory council recruits: technical, administrative and community—all are to keep each other accountable

15. TEDMED Talk What happens when patients become leaders on the health team? America Bracho 2013

16. “Recruit the heart but train the mind.”
Improved Engagement - 2
“Recruit the heart but train the mind.”
Thinking about education
Key to better engagement
“Bootcamp” concept provides
Background knowledge
Common language, richer conversations
A level playing field
Together determine action steps
I’ll explain how we do this and how this changes the outcomes—a comprehensive education, with authentic language but time to ask questions, digest and clarify.
Share examples from HPRN and NAPCRG

17. “Constant state of incomplete”
Improved Engagement - 3
“Constant state of incomplete”
Marking Progress
Mark the little steps and intermediate goals
Celebrate the conclusion of any project
Recognize PAC alongside usual practice rituals—
Luncheons, conferences, travel
Special invitations or opportunities to step out of comfort level

19. Relationship with Community
“Experts in your community”

20. Relationship with Community
Boots on the ground to
Carry messaging
Share philosophy
Be your eyes and ears
Recruit
Be ambassadors
Gather ideas and feedback

21. High Plains Research Network Testing to Prevent Colon Cancer

22. Activity: Identify a project at a practice that is currently being worked on. Answer the following questions; 1. What is the primary outcome of the project? 2. What aspect of the project would most benefit from hearing the patient experience? 3. How do you think interacting with a patient would change the potential project outcomes? Report back to the group
Maybe here the tables could brainstorm a way to engage their PAC in a QI or Redesign task? What education would the patient advisors need to engage in the process? Who could provide the education?

23. Potential Role Expansion and Sharing Patient Stories

24. Expanded Practice Champion Role
Recruitment of patients
Trains patients as leaders
Liaison between the board and the practice
Assist patient advisors in group facilitation
Schedules presenters with guidance from the board

25. Expanded Patient Advisor Role
Act as a liaison to the rest of the practice, the health system and the community – sharing stories
Involved in QI teams and projects
Advisors as co-chairs (as a rotation or elected to a 6 month - 1 year membership)
Develop meeting agendas
Assist practice champion in facilitating meetings
Take on the responsibility of meeting minutes and documenting action items
Recruit, interview and orient new advisors
Smaller groups encourage greater discussion and participation by all members. Most people are more
comfortable speaking in a smaller group. It is more challenging to facilitate larger groups and obtain
input from everyone. Larger groups will provide a wider range of experiences and input. They also
are able to have broader representation of diverse populations. Consider availability of meeting sites
to accommodate various sizes of groups. Twelve to eighteen patient and family members is usually
considered a manageable size.
No more than 3-4 staff should have a permanent place on the council. Other staff can attend depending
on topics for discussion. Staff should have easy access to the council. Too many staff will
result in patients/families not feeling it is their council.
Consider length of term with rotation being intermittent rather than everyone turning over at once.
Suggested term is 2-3 years to maintain some consistency.
Consider compensation in the form of a small amount to cover travel expenses, baby-sitting,
or other costs that might be incurred. A good way to provide compensation would be to provider a meal for the patients when they attend
Number one rule: be consistent!
Monthly is usually adequate. Less frequent - lose momentum and involvement. Too frequent, members will have trouble attending. You could move the meetings to bi-monthly or quarterly once you have the board/council sustained. Use the same days/times each month based on the convenience of patients and the availability of space
Just as a typical meeting always have an agenda, take minutes and develop action items, practice action and patient action. Keep all minutes and completed history of tasks, review these periodically, quarterly or every 6 months to celebrate the success of the board and to show off your accomplishments. The practice should evaluate if the board is tracking goals and work aligns with what is taking place day to day and that patients can see.

26. Sharing Patient Stories
Stories have a long term impact on the way someone views different circumstances.
Help patients prepare to tell their story using the following questions;
What am I willing to share?
What do I feel is too private to share?
What does my family not want me to talk about?
What will my story teach those who are listening?
Have I had negative experiences that are still bothering me and will be difficult to share in a constructive manner?
A story is a precious resource to the practice to learn from and grow
Audiences, the practice, health system leadership respond best to authentic and constructive stories.
Stories can lift the spirit or be a lesson in how an interaction can improve. A balance of positivity and opportunity for change can help an audience to develop action. In quality improvement we are all learning from each other through successes and failure and interacting with advisors should be a similar process
Exploring patient stories and experiences can develop new understanding of the patient network and what they patient brings to the group.

27. Questions & Answers

28. Tools for Practices to Use
Tips for How to be an Effective Patient or Family Advisor: A beginning List
Sharing Your Story: Tips for Patients and Families
Presentation by Patient and Families: Staff Liaison Coordination and Preparation Roles

29. Resources and Additional Information
Reprinted with permission from:
Institute for Patient- and Family-Centered Care (
6917 Arlington Road, Suite 309
Bethesda, MD 20814
Phone Fax
Publications:
Essential Allies Patient, Resident and Family Advisors: A Guide for Staff Liaisons
Word of Advice: A Guide for Patient, Resident, and Family Advisors
Tools/Checklists
Research Articles
How to Videos