The Stanford Framework for Stakeholder Partnership
The Stanford Framework for Stakeholder Partnership
It has been iteratively prototyped and improved at the world’s leading patient-centered medical conference with participation from over 100 patient scholars recruited from around the world.
Endorse our Everyone Included™ Declaration for Health Care Innovation
At the heart of the Stanford Framework is a declaration to nurture an environment that values everyone’s expertise and includes all health care stakeholders in conversations about the future of health care. We call these ideals our Everyone Included™ vision for health care innovation. We ask those seeking to use the Stanford Framework to endorse Everyone Included™ by sharing our declaration with other team members and stakeholders in your organization.
By sharing your support for the Everyone Included™ you signal the importance of an environment that values everyone’s expertise and includes all relevant stakeholders in the culture of your organization. Our declaration is intended to create a shared model amongst all team members to engage in meaningful dialogue through a framework of mutual appreciation and valuing of expertise and inclusivity amongst all stakeholders.
Stanford Framework – Charter Guidelines
Our Stanford Framework includes Everyone Included™ charters that are designed to provide specific guidelines to assist entities in implementing stakeholder partnership in a variety of health care domains. Our roadmap for Everyone Included™ charters includes the items listed below. Entities who wish to implement Everyone Included™ charters may also obtain a license to use the Everyone Included™ branding in sharing their implementation efforts with the world.
We plan to work broadly with health care and standards-based organizations to offer other benefits to entities that implement the Stanford Framework and Everyone Included™ charter guidelines.
Click the charter icon below to learn more or proceed directly to create a charter license.
Convenings
Technology
(In process)
Research and Publishing (In process)
Service Innovation
(In process)
Industry
(In process)
Award and Funding
(In process)
Frequently Asked Questions (FAQs)
Here are some frequently asked questions (FAQs)
about the Stanford Medicine X Framework for
patient partnership
What is the Stanford Framework?
The Stanford framework is not a simple checklist for inclusion.
It is a framework to create meaningful stakeholder partnership in health care and is composed of our Everyone Included™ declaration of mutual appreciation for and valuation of stakeholder expertise and inclusivity, along with a series of design principles, implementation aids and charter guidelines. The framework is intended to help entities build value through partnership with patients as experts in the experience of their conditions and in their interactions with the health care system. The Stanford Framework builds off Everyone Included™ principles of mutual respect and inclusivity as drivers of health care innovation.
Our Stanford Framework for convenings was co-developed by the Stanford University Medicine X program with a board of epatient and caregiver advisors as well as interdisciplinary health care providers over a five year period. It has been iteratively tested and prototyped at the world’s leading patient-centered medical conference with participation from over 100 patient and caregiver participants recruited from around the world.
How might my organization benefit from using the Stanford Framework for patient partnership?
Medical events are convened to drive improvement in health care through the creation of networks of domain experts, sharing of information, creation of collaborations, and thoughtful challenging of conventional thinking. Patients can make important contributions in all of these areas.
Well planned patient partnership brings value to medical convenings by helping everyone understand the issues and problems that matter most to patients, caregivers and their families. Patients bring empathy to discussion of the clinical care of patients, and widens the research agenda to identify domains that are important to patients. The active participation of patients also helps promote cultural change in medicine towards a productive collaboration with patients in health care design, delivery, education, research and practice.
Who might best utilize the Stanford Framework?
The Stanford Framework is intended for all organizations that seek to build value and enhance the expertise of their programs by including patients and caregivers as partners in their work. The Stanford Framework is designed to accommodate entities of any size and diverse resource settings. Anyone who wants to build value through partnering with patients and caregivers might utilize the Stanford Framework.
How was the Stanford Framework developed?
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Has the Stanford Framework been validated or tested?
The Stanford Framework has been iteratively prototyped and tested over five years through design challenges, workshops, research projects and convenings by the Medicine X program at Stanford University.
Over 100 patients from around the world have participated in our Everyone Included™ programs. Each participant has provided program feedback and evaluation as part of a continuous quality improvement program.
How can I implement the Stanford Framework?
You may sign a declaration showing your support for Everyone Included™, our model of mutual respect and inclusivity as a framework for health care innovation on this website.
We are also creating a series of charter guidelines, design principles and implementation tools for a variety of domains in health care. We are starting with our Stanford Framework for convenings, which is published here on this website.
Future Stanford Framework domain initiatives include: medical research and publishing, health care service innovation, industry participation, award and funding programs.
Patient Partners in Everyone Included™ Programs
“Nothing about us without us!” is a phrase close to the heart of Medicine X and its programs. We live our values of mutual respect and inclusivity by co-creating our programs in partnership with patients. Over 100 patients have participated in our programs and initiatives. Our patient partners help co-create our initiatives, initiate new ideas and programs and provide feedback to continuously improve them.
We are proud to recognize just some of the amazing individuals who have participated in and contributed to the development of our Medicine X programs and initiatives.
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Abby Norman writes about healthcare reform and her personal experience as an endometriosis patient and advocate. [2015]
Despite multiple arthritis and chronic pain diagnoses, Alan Brewington still skis, hikes, works full-time, is a homeowner, earned 2 degrees, and is a 2nd-year ePatient advisor for Medicine X.
As a 20-year, three-time cancer survivor, Alicia Staley has worked very hard over the past few years to advance the patient experience in the field of oncology care.
By authentically chronicling life with type one diabetes on her blog, Allison aims to inform and empower other patients to seek the care that they deserve.
Andrea Downing is a BRCActivist. When she was 25, Andrea discovered she has up to an 87% lifetime risk of having breast cancer and up to a 60% lifetime risk of ovarian cancer when she tested positive for a BRCA1 deleterious gene mutation.
Annette McKinnon is an advocate for patient inclusion in conferences, research and decision making in health care.
Breck Gamel is a Mom-Advocate for her son with the life-shortening disease Cystic Fibrosis.
Brett Alder built a web app that would allow ePatients with any condition to connect, share solutions, and feel comfortable being their real selves.
Britt Johnson is a spondyloarthropathy and rheumatoid arthritis ePatient and blogger of TheHurtBlogger.
Britta Bloomquist was diagnosed with the highly controversial Chronic Lyme Disease, and in 2013, Britta was diagnosed with Ankylosing Spondylitis, and previously wrote for the now defunct blog, Chronically Young, and she also advocates on multiple social media outlets.
Carly Medosch has been living for over twenty years with Crohn's disease and with fibromyalgia, and is passionate about breaking down silos between patient communities so we can share knowledge, support and increase our advocacy power.
Carolyn Thomas is a Mayo Clinic-trained advocate, knowledge translator, speaker and heart attack survivor who writes on women, heart disease, and the patient experience.
Casey Quinlan a storyteller with an extensive background in broadcasting, theater, and stand-up comedy. Days before Christmas in 2007, Casey was diagnosed with breast cancer. She wrote about her experience in a book about managing medical care, Cancer for Christmas: Making the Most of a Daunting Gift, an Amazon Best Seller in October 2009.
Since her mom’s death in 1997, Cathy has worked hard to raise awareness and improve the fight against ALS. She supports several ALS organizations and advocates on Capitol Hill annually.
As a college student studying family dynamics, Charlie Blotner hopes to change the future of participatory medicine for chronically ill adolescents and young adults.
Cherise began blogging about in hopes to inspire and help people like her with diabetes. She runs Diabetes Social Media Advocacy (DSMA) a program provided by Diabetes Community Advocacy Foundation (DCAF). DSMA promotes social media in all its forms to empower people affected by diabetes and to connect them with each other to foster support and education.
Christopher Snider was diagnosed with type 1 diabetes in the fall of 2002 during his freshman year at Virginia Tech. He actively participates and advocates on behalf of the diabetes community whenever possible—be it Twitter, Tumblr, Facebook, blogging, or even his podcast, he's all about making connections and sharing stories.
Cyrena Gawuga had always planned to be a physician, but her spinal cord stroke in February 2014 turned her into an ePatient instead.
Dana Lewis created and moderates the internationally-recognized #hcsm (health care communications and social media) conversation and community on Twitter.
Danielle Edges is a mother to two daughters, Alexandra and Aria. Alexandra was born with a rare medical condition, Heterotaxy Syndrome, resulting in 5 heart surgeries and an abdominal surgery all before the age of 4.
Deborah Boyce is an ePatient Scholar, a Cancer Research Advocate, and a 5-time Clinical Trial Participant.
As a blogger, a member of the Society for Participatory Medicine, chair of the board of the American Liver Foundation, and CEO of CryerHealth, Donna communicates virtually and in-person with thousands of patients, patient advocates, and providers in disease states she personally lives with.
Diagnosed with ovarian cancer in 2005, Dorinda authors the blog Women of Teal, where she shares resources with other women in New Jersey and shares her journey with the disease.
Doug Kanter is the founder of Databetes, a graduate of NYU's Interactive Telecommunications Program, a designer and photographer.
Elizabeth Apple is passionate about improving outcomes for young (working-age) stroke survivors.
Emily Bradley she started and runs Chronic Curve, a community for other adults with chronic diseases and chronic pain; specifically types of autoimmune arthritis and auto inflammatory diseases.
Emily Kramer-Golinkoff is the co-founder of Emily's Entourage, a nonprofit organization that raises funds and awareness to cure Cystic Fibrosis.
Erin is a member of the Committee for Patient Engagement at the Cystic Fibrosis Foundation and works on the Committee for Patient & Clinician Engagement on the New York CDRN. She also leads the patient engagement work for the development of a Collaborative Chronic Care Network (C3N) for Cystic Fibrosis.
Heather engages with the diabetes community and is eager to find ways to measure the impact of peer mentoring in youth with diabetes.
Hugo Campos is an advocate for patients with pacemakers and implantable defibrillators to gain access to data collected by their cardiac devices.
While exploring the impact of Multiple Sclerosis to her previously “normal” life, Jamia has re-mastered her life as a wife, mother of 2 boys, and a professional trail blazer.
Janet Freeman-Daily has metastatic non-small cell lung cancer and relies on social media and clinical trials to stay up to date on treatments.
After being diagnosed with Long QT Syndrome in 2009, Jasmine Wylie works to further the ePatient movement by best utilizing her passion and strengths
Jody Schoger is a free-lance writer, blogger and advocate currently living with metastatic breast cancer. Her writing has been featured in OncologyTimes and Cure online. She has been quoted in USA Today, and appears on SIRIUS radio's "Doctor Radio" discussing cancer survivorship and patient engagement. She is a co-founder and co-moderator of #BCSM, the breast cancer social media community.
Joe Riffe is also known as the Prosthetic Medic. He literally fell into his role as an ePatient and amputee activist when he fell 110 ft off of a waterfall. Joe has been on the ePatient Honor Roll; spoken to the Kentucky House of Representatives; and is petitioning the President to push Prosthetic Insurance Fairness nationally.
Julie is a Certified Holistic Health Coach, an Autoimmune Warrior, a yoga instructor, a Patient Influencer Network Director at at WEGO Health, a National Psoriasis Foundation Mentor, and a HealthCentral ambassador.
Julie (Jewels) Doskicz RN is a health blogger, ePatient, and creator of shesugar.com. She serves JDRF as a mentor, advocate, volunteer, and member of the online diabetes support team.
Julie created the first-ever narcolepsy advocacy mobile app, awareness video series and infographic to empower advocates with essential communication tools.
Karen Curtiss is an author and founder of Campaign ZERO, focused on Families for Patient Safety.
Karen persevered in the search for a cure for her daughter, who at 4-years-old succumbed to Niemann-Pick Disease, a rare fatal genetic condition.
Dr. Katherine Arbanasin leads the Northern California Neuroendocrine Cancer Fighters, a neuroendocrine cancer support group.
Kathy Kastner is a Knowledge Mobilization strategist at the Technologies for Aging Gracefully Lab, and CEO at bestendings.com.
Katie McCurdy is is a User Experience Designer, researcher, and a patient with 20 years' experience with the autoimmune disease Myasthenia Gravis.
Living with Type 1 Diabetes for 28 years, Kim Vlasnik began writing a diabetes patient blog called Texting My Pancreas in 2010, and in 2011 she started a diabetes support project called the You Can Do This Project.
At Not Standing Still’s Disease, Kirsten Schultz writes about her personal experiences with Still’s Disease and issues facing children and young adults affected by rheumatic and other chronic diseases.
Laura Barre scours the internet for information and uses social media to connect with others with "autoimmune soup" in the hopes of learning more about her disease.
Leslie Rott was diagnosed with lupus and rheumatoid arthritis in 2008, at the age of 22. She has a PhD in Sociology from the University of Michigan, and is currently working on a Master'd Degree in Health Advocacy at Sarah Lawrence College. She writes about her illness experience in her blog Getting Closer To Myself.
Liza Bernstein is a three time cancer survivor who has used Twitter and social media to extend her patient advocacy work to help others become engaged patients and partner in their own care.
Lizmari Collazo lives with type 2 diabetes, and she dedicates her time to help advocate and educate others about this disease.
M.A. Malone is the Director of Broadcast and New Media Relations at Stanford University.
Marianne Vennitti is a passionate rare disease Patient-Advocate and Co-Founder of the Alliance for Cryoglobulinemia.
Marie looks for ways in which patients form online communities of support which in turn informs and empowers more patients.
Mark is passionate about using design and systems-thinking tools to shift the prevailing view of mental illness.
Martine Ehrenclou is a healthcare consultant, an award-winning author, a freelance writer, and a blogger at thetakechargepatient.com.
Marvin Calderon Jr. has a passion for singing, and he hopes to strengthen his social media skills through a healthcare advocate perspective.
As a pre-med student and ePatient, Matthew Argame hopes to gain insight on what health care means on both the patient’s end and physician’s end.
Matthew Charron believes in health care as a fundamental human right. He believes that this can only be realized when health care providers, scientists, and patients have access to all scientific evidence.
Diagnosed with Acute Myelogenous Leukemia in 2013, Matthew Dudley underwent chemo and a stem cell transplant. He's been given a second chance at life and has returned to his profession as a physician.
McKenzie is an ambassador at the Arthritis National Research Foundation, and a blogger at Life According to Kenz.
Melissa has undifferentiated connective tissue disease (UCTD) and chooses to use the power of social media to improve patient experiences.
Dr. Gould decided to shift her focus away from being chronically ill to helping others communicate clearly with healthcare professionals and manage hospitalizations.
Meredith is a patient advocate who offers unique insight from her experiences as a healthcare professional, long-term caregiver, patient and digital media publisher.
Diagnosed with Crohn's at aged 12, Michael's passion is mentoring patients and their families. He is also a published author and founder of 11Health.
Once Health Care Social Media became an effective global communications tool, Michael Weiss launched a blog at www.HospitalPatient.com, where he regularly writes about topics which help people around the world living with chronic diseases such as Crohn's.
After being diagnosed with Crohn's, Molly Reisman became the co-facilitator of a Crohn’s and Colitis Foundation of America support group, and is also actively involved in the Crohnology.com community.
Natalie Abbott is a rare disease ePatient, and has been involved with the Moebius syndrome ePatient community since it developed an online presence.
Natasha Gajewski is the creator of Symple Health, a powerful tool that helps users record & manage their symptoms
Seniors, patients, their spouses and families need an advocate. As a new senior and a citizen, Natrice Rese believes it is important to raise awareness, and use our voices to make a difference and reach all segments of society.
Nikki Estanol was diagnosed with Rheumatoid Arthritis in 2007 at 17 years old, and it wasn't until recently that she has taken the driver's seat in managing her health, especially through technology and social media.
Nikolai Kirienko is the Project Director of Crohnology.MD, a Robert Wood Johnson Foundation funded pilot grant to design, build and evaluate a biometric device enabled mobile personal health record for Crohn's disease.
Nisha Pradhan is an anosmia patient and serves on the Executive Board of her campus' Pre-Health Club and programming council.
Rachel Crooks' diagnosis of Myasthenia Gravis and subsequent journey renewed her interest in becoming a physician. She blogs about patient experience and improving communication between patients and their health care providers.
Richard Anderson is an ePatient scholar who is responsible for teaching and implementing the human-centered design process at General Assembly.
Robin was misdiagnosed with an autoimmune disease and now believes that technology can empower patients and make a positive impact in the medical field.
Ryan Prior is a journalist and non-profit director interested in the intersection of complex disease, molecular medicine, and bio-informatics. Ryan's specific interest is in severe neuro-immune conditions like chronic fatigue syndrome/myalgic encephalomyelitis, as he contracted the disease in 2006.
Sabine Schwab is a 32-year old native German who moved to the USA in 2010. When diagnosed with a grade II-III astrocytoma – a brain tumor - she quickly had to master the American health care system to take charge of her care. She is an international ePatient, a young mom, and a blogger at sabineandmichael.blogspot.com.
Sara Nicastro was diagnosed with type 1 diabetes in February of 2003 and is a passionate diabetes advocate. She writes at MomentsofWonderful.com, and is Social Media Committee Chair on the Advisory Board of the Diabetes Community Advocacy Foundation.
Sarah's painful experience post-surgery made her realize that there are gaps in the healthcare system and patients have enough meaningful information to address them.
Sarah Kucharski, or AfternoonNapper, blogs as a health advocate fostering the patient voice in medicine.
Scott Strange has been a Type 1 diabetic since 1970. Strangely Diabetic is his story of how diabetes has affected his life and how his life was changed when he learned that he wasn’t alone in this chronic condition.
Sean Ahrens is currently building a social health network for patients with chronic conditions, with the backing of RockHealth.
Sheren Chiang is the Founder of Breadcrumb Health, a healthcare company focused on improving the patient experience.
Sherry Reynolds is an eHealth Evangelist, focused on Human Centered Health Design, and a Social Venture Entrepreneur.
Stephen Wilkins works on increasing patient engagement and improving outcomes, health care use and satisfaction by enhancing the quality of physician-patient communication.
Steven Keating is a doctoral candidate at the MIT Media Lab who is developing novel platforms for 3D printing and synthetic biological fabrication.
Teigan is an artist, advocate, public speaker, and full-time psychology student, whose goal is to use her personal expertise as a multiply-disabled person to spread the disability rights message.
Terri Wingham writes at A Fresh Chapter, a blog about life on the other side of breast cancer and includes stories about surgery, chemotherapy and new travel adventures.
Two of Tim's three daughters experienced preventable medical errors at the same children's hospital.