Everyone Included Guide to Action

MEDICINE

Medicine X Program

AN INTRODUCTION AND GUIDE TO ACTION

page 1

MEDICINE

Medicine X Program

Medicine X, Stanford University’s premier health care innovation program focusing on the intersection of emerging technologies and medicine, is a catalyst for new ideas about the future of health care. Our Stanford affiliated organizations include Stanford Health Care, Lucille Packard Children’s Hospital, and faculty from schools at Stanford University including Engineering, Computer Science, Business and Education.

LARRY CHU, MD Professor, Stanford University School of Medicine

The Everyone Included™ Value Proposition • Build trust and respect • Create shared mindset for change • Produce more innovative and creative solutions • Create a shared culture of health

Medicine X has world-leading programs in health care innovation, design, clinical innovation, implementation and research.

Our presence on the campus of Stanford University in the heart of Silicon Valley allows us to flourish at the nexus of innovation, technology, entrepreneurship and ground-breaking medical research.

Medicine X is grounded in our Everyone Included™ model of co-design and leadership. We believe in respect for all cultures and diversity of opinions to drive true innovation in health care.

Everyone should be valued for the expertise they bring to discussions about the future of health care. Our program aims to foster an environment that values everyone's expertise and seeks to include all relevant stakeholders in the conversation.

Please join us in a mindset of mutual appreciation and inclusive engagement called: Everyone Included™.

page 2

Our Vision Create a culture of health in which everyone is trusted and respected for the expertise they bring, and where openness and experimentation is the norm, people have personal ownership of health, individual stories have global impact, and the patient voice and choice is part of all stakeholder decisions.

page 3

MEDICINE

Medicine X Program

About Everyone Included™ What is Everyone Included™?

Everyone Included™ is a framework for healthcare innovation, implementation and transformation based on principles of mutual respect and inclusivity. It is the culmination of six years of co-creation with patients, caregivers, providers, technologists, and researchers at Stanford Medicine X that has resulted in a series of design and leadership principles intended to drive collaborative healthcare innovation efforts.

Our work has been field tested and iteratively improved over the past six years at our Stanford programs and convenings worldwide.

Who developed Everyone Included™?

Everyone Included™ is a living document and framework for thinking and working that is continually co-created by a diverse representation of all healthcare stakeholders. It was borne from the work of the Stanford Medicine X program, under the direction of Dr. Larry Chu and co-leadership of ePatient and health care innovation thought leaders Jamia Crockett, Nick Dawson, Gilles Frydman, Sarah Kucharski, Britt Johnson, and Christopher Snider.

Where has Everyone Included™ been successfully implemented?

Everyone Included™ has been successfully implemented and/or been used as a framework for healthcare transformation around the world, including: • Stanford University School of Medicine • Vanderbilt University School of Medicine • Johns Hopkins Sibley Innovation Center • White House Precision Medicine Initiative, special joint workshop with Medicine X on patient partnership • Non-profit organizations such as Emily’s Entourage • Successful digital health entrepreneurs who are bringing transformative solutions to market such as 11health and Enara health. page 4

page 5research.

Medicine X White House Workshop on partnering with patients in precision medicine

MEDICINE

Medicine X Program

About Everyone Included™ When was Everyone Included™ created?

The foundational work upon which Everyone Included™ is based began in 2010, sparked by conversations Larry Chu initiated with Kevin Clauson, Susannah Fox, Alan Greene and Amy Tenderich to include patients in speaking and co-designing a panel at the first conference he organized on emerging technology and medicine at Stanford in 2011.

Further collaboration and co-design with ePatients Hugo Campos, Sarah Kucharski and others lead to the genesis of the Stanford Medicine X program the following year.

In the subsequent six years, lessons learned from co-design and leadership of diverse stakeholder groups to work collaboratively together have resulted in these Everyone Included™ co-design and leadership principles.

We're Here to Help: MedXstudio Our MedXStudio Palo Alto, located in our Medicine X offices on our Stanford campus is only one of our rallying points of action to help the Medicine X community implement Everyone Included™ design principles into their work. Stanford Professor Larry Chu, MD, MedXStudio staff designers Justin Lai and Sarah Jiang, along with our affliated faculty designers Monika Wittig, Assistant Professor at Inworks, an innovation initiative at University of Colorado Denver and Nick Dawson, Executive Director of the Sibley Innovation Hub, Johns Hopkins Sibley Innovation Center, all work together collaboratively on MedXStudio initiatives to bring Everyone Included™ in health care to life.

page 6

MEDICINE

Medicine X Program

Our Design Principles

These are the ten Medicine X design principles that nurture our Everyone Included™ work.

BE A REBEL Lead as health care rebels.

Stand up for what you believe health care should be.

FACILITATE CONNECTIONS Connect stakeholders with aligned interests to facilitate meaningful collaboration and connection.

VALUE EACH PERSON Value each person’s knowledge, experience and skills.

TREAT WITH DIGNITY Treat all people with the dignity they deserve.

BE HUMAN Create an environment that celebrates and encourages “being human.”

PROVIDE A STAGE Provide a stage from which the hardest, most important stories may be told.

BE HUMAN-CENTERED Be human-centered in addition to patient-centered.

BE BEAUTIFUL AND TASTEFUL Be beautiful and tasteful by design.

CO-DESIGN Promote co-design with patients and health care stakeholders.

CREATE MAGIC Create magical experiences that surprise and delight your audience.

page 7

MEDICINE

Medicine X Program

Our Leadership Principles

We believe in respect, not power hierarchies. This means we recognize and pay respect to the unique expertise individuals bring to the decision-making process and honor that expertise over one’s title or position when making our decisions. Hierarchy is important in all organizations–we just believe linking power with respect isn’t.

Leadership can be flexible. Leaders and leadership can be fluid and flexible. Flexible leaders cultivate change and innovation while helping the team stay true to the organization’s vision and mission. Flexible leaders surround themselves with talented individuals and recognize their leadership by thinking of themselves as the center of a wheel instead of the top of a pyramid.

Diverse teams lead to more creative solutions. Teams that have a hierarchal power structure reach decisions fastest, but diverse teams where individuals are valued and respected for the expertise they bring lead to more creative and innovative solutions. Everyone Included™ leadership seeks to create teams that include diverse representation from all health care stakeholders.

Diversity requires considerate leadership. Considerate leaders think of the collective “we” but also respect, value and acknowledge the unique expertise of the individuals that compose a diverse team. Considerate leadership can help mitigate inherent misconceptions that link power with respect and helps all individuals contribute their fullest potential as a member of a diverse team.

page 8

MEDICINE

Medicine X Program

A culture of empathy and consideration creates trust. All stakeholders can bring inherent biases, misconceptions and misperceptions to a diverse team. Create a culture that values understanding other people’s experiences, helps safely uncover and learn from biases, and seeks to embrace differences and vulnerabilities as a collective strength. Create an environment that addresses the physical and emotional well-being of all members of a diverse team.

Conflict can lead to more creative solutions, but reduce its risk. Task conflict can help a team consider alternate viewpoints and lead to more creative solutions. Process and relationship conflicts almost never help a team perform better and can threaten team cohesion and viability.

Recognize the value of task conflict but manage process and relationship conflict through considerate leadership.

page 9

" My story is not about happy endings or miracle cures...

It’s about hope for healing our health care system through connectivity and collaboration."

~ Emily Kramer-Golinkoff

page 10

MEDICINE

Medicine X Program

Everyone Included™ case study:

How Emily’s Entourage leverages community to save lives

The Everyone Included™ co-creation model applied to medical research Emily Kramer-Golinkoff, a Medicine X ePatient Scholar, White House Precision Medicine Presidential Champion of Change and patient with cystic fibrosis, founded Emily's Entourage to rally communities to help find a cure for rare nonsense mutations of cystic fibrosis, including the scientific community. EE works side by side with scientists and biotechnology and pharmaceutical companies to fast track research for new treatments and a cure for nonsense mutations of CF. The overarching goal is to find a breakthrough in time to save Emily and others like her, and the organization quickly realized that required changing the paradigm in biomedical research. Patient and family-led organizations haven’t historically played such an intimate role in research and drug development. EE has experienced some challenges, but in rising to meet those challenges, they’ve used the power of a human story to bring all parties together to get them focused on the same shared goal, and they’ve harnessed the urgency of Emily’s situation to spur creativity and collaboration for faster breakthroughs that save lives.

Emily Kramer-Golikoff ’s Everyone Included™ call to action “The first step is to identify the ultimate stakeholder–the patient–and then reach out and talk to them. Patients and families are eager to partner. We want to help. We want to be part of the process and we want to be there every step of the way. We want to help set strategic priorities, we want to co-design and co-produce studies, we want our expertise and insight to be valued as the essential part of the team that it is–and we also want our unique offerings to be harnessed to make healthcare better for us and everyone.” page 11

MEDICINE

Medicine X Program

Everyone Included™ case study: How 11Health is revolutionizing stoma care

The Everyone Included™ as a framework for success in new health care ventures Michael Seres, the founder of 11Health, talks about how Everyone Included™ principles guided the product’s genesis from conception to successful commercial launch: “A patient founded 11Health, so underpinning everything the company does is a deep understanding, from experience, of the unmet need of the patient. However, for our business to deliver on its promise it has to have input and buy-in from every compass point in the healthcare landscape. Unless everyone is on board, our belief is that you cannot be successful. There is no point in creating the best technology for a patient if healthcare professionals won’t use it, hospitals don’t see the benefit, and insurers won’t pay. We decided that we needed to ensure our company understood the needs of everyone involved in the care delivery process before we launched.”

The Everyone Included™ co-creation process Patients and caregivers help focus efforts on problems that matter most to those on the frontlines of care. Since a patient led the development of 11Health through co-creation with providers and technologists, its technology and product development mission aims to solve real issues for patients and their families. Everyone Included™ values and respects the unique expertise each individual brings to the co-creation team. In building the technology at the prototype stage, Seres found that his surgeon and nutritionist were instrumental in understanding what data was needed from the device to help providers better collaborate and create care with patients.

page 12

"In any industry, you would never start a business or develop a new product without all stakeholders involved. So why on earth would it be different in health care?" ~ Michael Seres

page 13

MEDICINE

Medicine X Program

Everyone Included™ guide to action: How to implement into your practice

1. Start a conversation. We encourage you to print a copy of the Everyone Included Design Principles available at www.everyoneincluded. org. Distribute in your team and start a conversation about what everyone included means within your organization and other areas in healthcare.

Some starter questions are: • • •

How do we work? What is our culture? Is it more outcome focused?

Is it hierarchical? Is it empathetic? Who and what contributes to this culture, and what areas need work?

Who makes up our team? What hats do each of us wear? What each person's superpower? Who might be missing from the conversation? Who could lend a novel form of expertise?

Which of the design principles resonate most with our team or work? Which resonate least? Why is that?

2. Pinpoint an Everyone Included™ Moment. Everyone Included™ moments are actionable moments where individuals, teams or organizations to live the principles of leadership outlined on pages 8 and 9 of our guide to action. This might involve more stakeholders in the conversation, driving productive conversations, identifying and celebrating an individual’s area of expertise and beyond.

We’ve learned that starting conversations with more people at the table can lead to the nexus of expertise needed for radical new ideas. In planning for a meeting, pause to suggest or invite a stakeholder that isn’t present and take steps to include that stakeholder in the conversation.

Conflict can be productive when a team or organization uses the moment to consider another way of viewing a problem. Inviting stakeholders who might conflict with your work or ideas can radically and positively change the course of a project, implementation, or product.

page 14

MEDICINE

Medicine X Program

3. Define your space for co-creation. We have learned that co-creation requires consensus, time, resources, and space for experimentation. In order to successfully co-create in healthcare where these things are scarce, we encourage you to first define a problem space where co-creation and experimentation are possible, and to take steps to create the ecosystem for that co-creation to take place.

4. Invite outsider perspectives. At Medicine X, we encourage and celebrate outsider perspectives. The fields of business, design, policy, and beyond bring examples of analogous problems in analogous industries. In your work, search for analogues to the problems or challenges you face in your specific domain. It can provide the activation energy for an out-of-the box solution to a tricky problem.

Identify siloes of information and access within your own working environment. In large organizations and networks, individuals may be working on related problems but have no idea of it!

We believe in the role open sharing platforms play in surfacing novel sources of expertise. Sharing your challenges and lessons learned with the world can result in discovery of others with analogous challenges.

page 15

MEDICINE

Medicine X Program

“Everyone Included™ moves us from simply gathering disparate information and data to sitting at the same table and building a collaboration where our unique perspectives and expertise lead to greater knowledge and wisdom.”

PAMELA RESSLER, RN Founder, Stress Resources NURSE

"The Everyone Included™ model represents a new standard of human rights and vision for progress that...reflects a moral imperative to allow patients to participate in their health care as active, capable, and essential agents..."

EMILY KRAMER-GOLINKOFF Founder, Emily's Entourage and White House Presidential Champion of Change PATIENT

"Everyone Included™ creates a new expectation for collaboration and collective creativity.

By having Everyone Included™, questions you never thought to ask in the first place get answered."

CHRISTOPHER SNIDER Associate Editor, Quantified Self PATIENT

"Everyone Included™ is a disruptive force in health care that combines unique expertise from all stakeholders to drive innovation and change through openness and experimentation. It’s a model that encourages everyone to be health care rebels in an attempt to transform health care for the better." page 16

DOCTOR

LARRY CHU, MD Professor, Stanford Univ. School of Medicine