Be an Effective Patient/Family Advisor Make an Impact in Your Organization Hollis Guill Ryan, PFCC Program Coordinator, University of Washington Medical Center Kelly Parent, PFCC Program Manager, University of Michigan, C.S. Mott Children s Hospital and Von Voigtlander Women s Hospital
XX Guidance Resources Powerpoint Handout IPFCC Sharing Your Story: Tips for Patients and Families IPFCC Selecting, Preparing and Supporting Patient and Family Advisors in Primary Care University of Washington - Telling Your Story
Objectives Discuss key components for being a successful advisor while balancing life and personal activities Discuss how to effectively share patient and family stories Describe ways to raise difficult issues constructively Identify effective ways to collaborate with staff and avoid role conflict
4 Impact of Volunteer Advisors What do patients and families bring? Knowledge and experience Another set of eyes, brain, voice Passion Why involve patients and families? They know the system, the barriers, and how things really work They inspire and energize staff They are grounded in reality They bring connections with the community They are invested in the success of an institution It is an opportunity to give back, be involved, and contribute to success They can tell us what they REALLY want
Ways to Participate as a Volunteer Advisor Patient-Family Advisory Councils Hospital Committees Task Forces Focus Groups E-Advisors (surveys and materials reviewers) Facility Planning Committees Peer Mentors Orientation and Education Faculty and more
E-Advisors On-line list of patients and family members who review materials and complete surveys Benefits Quick access to determine a direction or trend Anyone can participate Challenges Not a picture perfect representation of whom we serve
Recruiting and Preparing Volunteer Advisors Recruitment Interview Background Check Volunteer Orientation PFCC Training How to tell your story How to actively listen How to know boundaries Placement Ongoing Support and Education
The Qualities of Successful Volunteer Advisors Experienced Open-minded Able to communicate negative experiences in a positive manner Good listening skills Respectful of diversity and differing opinions Committed to commitment Cognizant of team work concepts Committed to hospital success Solution-oriented Compassionate yet able to maintain boundaries Comfortable working with others who may be highly anxious Flexible and patient Able to see system issues going beyond personal experiences Able to tell a compelling story without bitterness Recognizes that council placement is NOT a support group Does not whine and complain
Thinking Through Your Commitment What are the expectations for my participation? meeting times frequency duration Will I need to work between meetings? Is there any compensation offered? How does my role benefit the hospital? Will there be regular training and support? Am I ready for the commitment? Is my family ready for my commitment?
Potential challenges of being Volunteer Advisors University of Michigan Volunteer Advisor Survey, 2010 Attending meetings that do not adhere to time restraints Participating in meetings with unprepared agendas Breaking through staff-induced barriers Not understanding the politics - people won't speak their mind Honoring your volunteer commitment when you have illness in the family and multiple commitments Connecting with the group when you do not have a leader personality Wondering whether our voices will be heard and respected
Preparing Staff and Faculty Inform Staff How to Access PFCC Program Volunteers Attend Staff Meeting Prior to Volunteer Start Date Define goals and expectations of having advisor join committee Discuss expectations of advisor including HIPAA Discuss expectations of staff including how to be welcoming and inclusive Assign to the advisor a buddy/mentor who will brief them of committee goals, common terminology, projects and attend first several meetings together Debrief with both staff and advisors regularly
Preparing for Meeting Participation Find out how to prepare for a meeting (what to wear, what to do ahead of time, what to bring) Jargon 101 -- ask for an explanation Learn how to communicate with the team How can I express my perspective so that others will listen? How do I ask tough questions? What do I do when I disagree? How can I listen and learn from the perspectives of others? How do I ensure that I think beyond my own experience? Who do I contact if I have concerns?
Finding Balance Know your interests Know your strengths Know your limits Time Energy
Storytelling We don t see things as they are, we see things as we are. ~ Talmudic teaching Facts bring us to knowledge but stories lead us to wisdom. ~Rachel Naomi Remen, MD Author Kitchen Table Wisdom The only thing that interferes with learning is my education. ~Albert Einstein
The 4 Gifts of Story* Story creates context by opening the imagination - what does your story mean to your listener? Context highlights human relationships - listeners develop a relationship with the characters in the story Context and relationship change behavior by inspiring people to act (connected action) - when real people are involved, the listener begins to put themselves into the storytellers place Connected action becomes a force for restoring the world - our heroic side surfaces and we want our actions to outlive us *Adapted from Storycatcher, Christina Baldwin, 2005.
Tips for Sharing Your Story Get to know yourself - Self-reflection What are you willing to share? What is too private for you? for your family? Recognize the elements of a good presentation Managed emotions with minimal drama yet heartfelt The story sandwich Positive-negative-positive Audience is left with a strong take-away message Prepare for your audience Who is my audience? Is there a theme or topic? What do I want my story teach those who are listening? How might I turn negative experiences into constructive learning? Include pictures of you/your family Be prepared for your audience--and you--to be emotionally moved
Collaborating with Staff Talk openly with staff about roles Ask how advisor can help staff Ask how staff can advance the work of advisors I work with PFCC to share my story, to work toward solutions that help both the staff and the patient and their family. Staff cannot know what it is like to be in our shoes and we can not understand what it is like to be in theirs. But in working together in this forum we can get a better idea and build better solutions that work for all. ~Volunteer Family Advisor
Seeing the Messy Side of Your Beloved Institution Educate yourself - utilize the internet and listservs; benchmark and read-up on best practices Be aware that most staff that you are working with have another job in the health system; they are working on many issues simultaneously Be respectful of staff expertise Remind staff of the good that they do Understand and respect that change happens slowly, especially in large institutions Remember the hospital is a business and at times, the business takes priority over other items
Raising Difficult Issues Constructively Meet with appropriate staff Elicit the help of a facilitator as necessary Keep goals realistic Use personal story but keep emotions even Avoid blaming but be prepared for defensive reactions Use good communication skills: State your concern clearly and simply Ask for and listen to other perspectives carefully Clarify what is being said by paraphrasing the response Avoid talking over others Be willing to work toward a middle ground solution Think about the good that will come out of today s difficulty
The Art of Listening Do not be easily shocked or embarrassed by a person s tears Remain warm and friendly Neither judge nor condemn Respect privacy Take time to listen to the feelings expressed in the message Remember your experience is different from theirs
We can t make people (institutions) better by trying to eliminate their weaknesses, but we can help them perform better by building on their strengths. ~Peter Drucker
Advice from Volunteer Advisors Remember that this is a huge culture change for care providers. Some are more on board than others, but we are changing minds and hearts every day. You are part of a team of dedicated folks who are going all the way with this mission. Agendas may seem like they take a long time to enact but just imagine what we are doing today and how that will affect others in a positive way in the future.
Challenges and Lessons Learned Several times per year, a PFCC staff member must debrief separately with both staff and volunteers Negative voices must be coached immediately but outside of the meeting Staff and volunteers should intermingle at meetings A staff or veteran volunteer should mentor a new member There is not a finite time that a bereaved volunteer should wait before sitting on a council Trust your gut!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. ~Margaret Mead The world is moved not only by the mighty shoves of the heroes, but also by the aggregate of the tiny pushes of each honest worker. ~Helen Keller