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Patient Partnering

The Challenges and Rewards

To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment

R W Emerson-Author

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The Patient Partner Orienteering Handbook

All Truths are easy to understand once they are discovered, the point is to discover

The 5Rs of Partnering:

Roles

Requirements

Responsibilities

Resources

Respect

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I belong because my experiences make me:

What to remember before I begin

Breathing in I calm my body. Breathing out I smile. Dwelling in this present moment, I know this is a wonderful moment

Thich Nhat Hanh

Unique
Strong
Valuable

An Expert
Flexible
Resilient

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Roles

Ralph Waldo Emerson-Poet and Author

Patient Partners may play many positions on the journey:

Teacher

Coach

Champion

Learner

Cheerleader

Challenger

Innovator

Observer

LIstener

Leader (and more…)

Advocate… and on and on

We will grow and unfurl together as our voices get stronger

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RESPONSIBILITIES

What I can do to help communicate the needs of patients and families ...

Show Up

Ask questions

Clarify confusion

Listen to all perspectives

Define and refine language

Identify stigma, barriers and prejudice

Speak up for patient needs

Pay close attention

Identify opportunities for change

Identify what works

Identify possibilities

There is a big difference between “Responsible for” and “Responsive to”

Share examples,stories, insight and wisdom from your healthcare experiences

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On Sharing Insight and Wisdom….

Turning Stones into Doves

Our health stories are precious stones in our pockets. By sharing them with others, we lighten our own burdens, share what matters and turn the gems of hindsight and understanding into doves on a mission.

We are made wise not just by the recollection of our past, but by the responsibility for our future

George Bernard Shaw-playwright and author

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Respect

Begins with::	Becomes:	Leads to:
Interest	Enthusiasm	Understanding
Imagination	Creativity	Innovation
Courage	Confidence	Strength
Commitment	Persistence	Resilience
Appreciation	Gratitude	Joy
Honesty	Openness	Transparency
Curiosity	Insight	Wisdom

Patience

The key to keeping your balance is knowing when you‘ve lost it

This is a cycle….As soon as you get past the far right of this table there is another column that tips the balance of healthy action. If what you are bringing is not recognized or valued by the rest of the team. For reciprocal relationships to really happen these character strengths need to be shared by everyone. Learning from each other’s strengths adds to our own toolkits. If for instance a person is filled with compassion and love for another but that love goes unrecognized then there is risk of burnout without the qualifier of unconditional love being added to that next column. If there is too much compassion without unconditional love, it becomes obligation and overaccommodation. If both team members in the relationship are aware of the effort being made the balancing act can happen and congruence can emerge. If curiosity becomes so strong but there is no transparency about something that it leads you off course and distracts you from your focus goal….the next step is to move back into the realm of interest… temper that What are the things that tip the balance? Respect for oneself and Others. Time

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Respect continued

Begins with:	Becomes:	Leads to:
Caring	Compassion	Love
Sense of Humor	Laughter	Joy
Patience	Patience	Patience
Listening	Collaboration	Results
Self Awareness	Awareness of others	Humility

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Breathing in I calm my body. Breathing out I smile, dwelling in this present moment, I know this is the only moment

Thich Nhat Hanh

During tough moments ask yourself:

What can I learn from this moment?

Appreciative Inquiry begs the question: Why is this a wonderful moment? What is good about what is happening right now? What are the possibilities that will arise once I can see the good in this moment? What hope does it give me for taking on the next challenge?

When you are facing a dark moment? How is the moment of finding out you are sick a wonderful moment? How is that moment when you are a caregiver facing the unknown and the exhausting up hill climbs you know you might have to face a wonderful moment? How is that moment when your research question gets put throught the ringer of constant gory surgery everytime you think you’ve got it right a wonderful moment? The Long vistas from where you are standing can make it a wonderful moment. Looking back at how hard and far you’ve come is the reason it is a wonderful moment. Seeing the rock you just climbed over can be that wonderful reflection. That tool of reflecting on why this is the only moment and a wonderful moment all at the same time is a powerful tool.

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What all team members need to support well being

RESOURCES

Collaborative Rules of Engagement

Fair Compensation

Confidentiality

Respectful Communication

Open, Transparent Information

Trustworthy Conversations

A Champion

Compassion

Appreciation

Positivity (YES more than NO)

Celebrations

Proof of positive impact

Never confuse Hunger with Greed

Ruth Stone-Poet

Healthcare systems are messy and expensive but the people who work inside of those systems need resources to ensure that we all have what we need to clean up after those activities and have what we need to pay for the time and effort it takes to do that work…..We all face the same barriers not enough time, energy or money to do the job well. Not enough honest conversation to figure out what we really need. We need respect we need to know our roles our responsibilities and what it will require for us to do our best We all need to see that our efforts are worthwhile. Often the behavior invites the opposite of what is needed

Which of these resources will you most need and which is most lacking in your organization? Which will be an easy thing to provide and which will be most challenging for you to ask for? Can you lead with your needs? If you are able to get the resources you need then you can truly start paying attention to the needs of the patients you are working for. Can you be satisfied with the resources you have available and focus on the needs of patients? When you will need to ask for more resources in order to keep your efforts focused on the needs of patients?

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Believe in yourself

Breathe

Balance

Be Present

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You will know if you are on the right path when...

RECIPROCAL RELATIONSHIPS HAPPEN

Co-Learning

Honesty

Truth

Cultural Humility

Trust

Shared Goals

Common Language

Equity

Common purpose

Shared Joy

Far reaching positive change...

When Spider webs unite they can tie up the Lion...Ethiopian proverb

This the ultimate reward that can come from working together with a diverse team. Personally I define this as something I experienced as a child. I had a best friend and the joy we shared together wasn’t something that we had to work at- it happened because we were equals but different, we spoke the same language and understood without a lot of debate or discussion at a very deep level.

This congruence will sneak up on you. I feel it every so often on our team, when we see the common purpose that we are all focusing on. In our case, that focus is to improve the lives of patients living with chronic illness and eliminate the barriers they face and facilitating choices that allow a person to be as well as possible despite all the challenging health conditions they face on their journey. It is the moment when we all pause, perhaps for a brief instant and see that yes, we can make things better just by virtue of giving it our best shot.

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The Higher you get, the higher you get.

The View from the Top

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Positivity Matters.

Burnout is real. Burnout comes from hearing No, Don’t, Can’t, Won’t too many times and consistently for too long.

Research has shown that a ratio of ⅔ positive to ⅓ negative must be balanced for anyone to flourish.

Essential for wellbeing: ⅔ Positive to ⅓ Negative.

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Observe system challenges, and

Think of possibilities

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What Assumptions Am I Making?
Are my words respectful, kind, confidential and effective?
Am I doing my best?
Am I taking anything personally?

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As we learn to have compassion for ourselves, the circle of compassion for others- what and whom we can work with, and how-becomes wider

Pema Chodron-spiritual teacher

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The following testimonials from others partnering for healthcare transformation may inspire your journey.

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When I first thought about the Challenges and Rewards of being a patient partner,

I realized they are intricately

bound and I cannot separate them into two parts……simply said, my Rewards are my Challenges.

My connection with my patient partner team, the larger team

energizes, educates, engages and inspires me. It is not

easy, this path, the process, the work but I love to learn, think out loud and work together with my teammates.

It takes courage to speak up, to believe that my experiences of living with a chronic illness have value.

Keeping balance, while trying to do all that is needed, is my biggest challenge and at the same time,

brings great rewards.

Being a persevering, pioneering patient partner with my teammates is a gift.

Patient Partner Co-Investigator

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Testimonials from the team continued...

"It is hard to describe how much I did not know what I did not know about patient partners. I thought my role was to help them (the novice partners) express their experiences for us (the wise researchers) to reformulate into usable research products, and to protect them from the "gory details" of research: the iterative cycles of revising our thinking and the administrative bureaucracy that attends such organizational structures. What I discovered was gentle support in laying bare my assumptions, revisiting previous decisions, and building new possibilities. Every time I completed a step without a patient partner I had what I can only characterize as a V8 moment: "If only I'd had a... " where the little can of vegetable juice is replaced here by the recollection that a patient partner is a real human who listens, asks, ponders, and wonders, unveiling new possibilities. I still hit my forehead in disbelief at a missed opportunity but at least I see them coming sooner and catch more of them now than I did." Research Study Project Director

I have become even more convinced that patients need to be a part of the process of designing and evaluating approaches to health care delivery. The questions and comments that our patient partners (PP) offer have compelled us to reexamine our assumptions and our approaches to communicating about patient engagement. The PP’s most compelling message is that patients want to be heard, understood, and actively involved in their care. This continually pushes us further toward the true intentions of patient-centered care-Researcher, Clinician and Medical Educator

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Challenge: My frustration at being so far behind in understanding about research or healthcare systems demanded that I have incredible patience with myself. I also had to show my gratitude for other members of the team who were going a mile a minute to get their work done but who also took the time to explain and educate me as I tried to understand the system challenges they faced. It was hard to be the one always having to stop the team for explanations or translations. To make sure I was following, I took notes and often went home to search the internet for more information and definitions. But I realized that by openly admitting my ignorance, I was doing something helpful for ALL members of the team who needed the same definitions or for the work to slow down. Asking busy people to slow down and translate their jargon was sometimes embarrassing and humbling but I see it now as the most crucial work I could do for everyone on the team and for other patients and medical professionals trying to understand one another. I wasn’t the only one getting overwhelmed! By asking questions, I was helping us all slow down and come to a deeper understanding.

Reward: I learned that I wouldn’t die from admitting my ignorance. I found I actually learned very quickly and easily, and faster when I allowed my natural curiosity to be fully present. I relish the opportunity now to ask someone to teach me what they know and love. It is a gift I can offer to someone to let them share their wisdom, their perspective and their knowledge with me. I welcome the chance to be a good listener and a learner. I reap the rewards. And I hopefully, I can earn someone’s respect and in turn that respect is reciprocated.

Challenge: My confidence as a member of the team depended on my having paid close attention and reflected thoughtfully on the questions or needs of the team. My patient and family caregiver life experience is not always seen as relevant, as wisdom or authority until the listener is truly open to learning from the patient’s expertise. I must demonstrate my interest in the work and be very patient with others and with myself during these tough moments. -Patient Partner Co-Investigator

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At the very beginning I was having concerns that I wouldn’t be able to keep up with the technical expectations. A team member called me and we had a very good conversation. She was understanding, supportive and we figured out that we needed some rules of engagement…..so we made them together.

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Patientslikeme website

https://www.patientslikeme.com/

Character strengths

http://www.viacharacter.org/blog/characterizing-workplace-using-character-strengths-create-sustained-success/

HIPAA training video

http://www.prohipaa.com/en/training_video/what-is-hipaa

Appreciative Inquiry

https://appreciativeinquiry.champlain.edu/learn/appreciative-inquiry-introduction/

Non violent communication skills

https://www.cnvc.org/Training/NVC-Concepts

A few references you might find helpful. .

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Some people who made our journey life enhancing, fun and rewarding…

Our whole enormous team at UVM, UMASS and ASU and all the co-investigators, consultants and collaborators spread out around the country who worked with us as respected colleagues and for sharing this opportunity with us to help improve healthcare for patients.

PCORI for getting everyone started moving the dial towards more patient centered healthcare systems and research.

Richard Reynolds and Joanne Delabruere for the beautiful life sustaining images included in this guide that put the wind in our sails as we made our way across the challenging waters of developing the tools and resources of the Patient Partner Guide.