Everyone Included™ case study:
How Emily’s Entourage leverages community to save lives
Everyone Included™ creates a culture where everyone is trusted and respected for the expertise they bring to the future of health care. This blog series shines a light on individuals and organizations bringing successful innovation to health care using Everyone Included™ principles.
“My story is not about happy endings or miracle cures. It’s about something bigger and more transformative. It’s about hope for healing our health care system through connectivity and collaboration.” ~ Emily Kramer-Golinkoff
What is Emily’s Entourage?
Emily’s Entourage (EE) grew out of one cystic fibrosis (CF) patient seeking to accelerate CF research to save lives by leveraging the power of community. Emily’s Entourage is a 501(c)3 organization that fast tracks research for new treatments and a cure for rare nonsense mutations of Cystic Fibrosis, a fatal genetic disease afflicting Emily and many others. Founded by Emily, her family and friends, Emily’s Entourage is made up of powerful, everyday people who have rallied together to raise nearly $2 million since 2011 to drive high-impact research, groundbreaking collaboration, and raise awareness around the world.
Emily Kramer-Golinkoff, the CF patient who founded the organization, was named a White House Champion of Change in Precision Medicine in 2015. She has also been a MedicineX ePatient Scholar since 2013, and is now a member of the ePatient advisory panel and Precision Medicine Advisory Board.
Everyone Included™ as a framework for medical research
Emily’s Entourage started with one CF patient’s story, but it’s taken off through its “it takes a village” approach. To achieve a breakthrough in time to save Emily and others with nonsense mutations of CF, it quickly became clear that close collaboration between scientists, clinicians, venture capital, industry, patients, and more was essential. EE has a deep bench of experts on its Scientific Advisory Committee, and an equally deep level of expertise on its Board of Directors, but the scientific community it has built extends far beyond those immediate circles. In fact, EE’s symposia have brought together experts from all across the globe and encouraged cross pollination of ideas and technologies to spur meaningful collaborations that lead to faster breakthroughs.
The Everyone Included™ model is a total win-win; it’s the right thing to do morally and it is the sensible thing to do from an outcomes and operations standpoint too. We believe in the power of collaboration. We believe in shattering the silos between researchers, diseases, and stakeholders. We believe that we are stronger and more powerful when we work together and we believe that each member of the team offers a unique expertise that is crucial for improving health care. We must harness that collective power to make change.” ~ Emily Kramer-Golinkoff
The Everyone Included™ co-creation model applied to medical research
Emily’s Entourage was founded 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 and 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.
“Share your story. Let people into your world and be open and straightforward about the things you need. You’ll be shocked to see how people come out of the woodwork to help. I’ve been constantly amazed by the thread of humanity that binds us, how eager people are to help and how much we all want to be part of something bigger than ourselves. It’s all about relationships and that starts with being willing to share your story and experiences.
Don’t assume that everything is already being done. Nobody has a bigger vested interest in your care and outcomes than you do. You can’t throw your arms up and assume that everything is being exhausted. If there’s a change you want to see in your health and care, then it’s up to you to do it.” ~ Emily Kramer-Golinkoff
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.”
About Everyone Included™
Everyone Included™ creates a culture where everyone is trusted and respected for the expertise they bring to the future of health care. This blog series shines a light on individuals and organizations bringing successful innovation to health care using Everyone Included™ principles.