MEDICINE
DOWNLOADABLE WORKBOOK AND PARTICIPATION GUIDE
Stanford Medicine X Grand Educational Challenge on COPD Sept 9–Dec 2, 2019 1
Our Medicine X Educational Grand Challenge is an opportunity to work with diverse and inclusive groups of health care stakeholders around an important health care problem by applying what you learn at Medicine X | CHANGE in an engaging and collaborative educational format. WHAT IS COPD? The topic of this year’s Medicine X | CHANGE Educational Grand Challenge is chronic obstructive lung disease, or COPD. It is a chronic lung condition that makes breathing difficult for the 16 million Americans who have the disease and millions more who are undiagnosed. According to the Centers for Disease Control, it is the #4 leading cause of death in the US and includes the conditions emphysema and chronic bronchitis. WHY IS COPD A CHALLENGE? Despite leading the US as a cause of illness and death, many people lack awareness of the condition or that they or a loved one may even have the illness. And there are more challenges with COPD, including trouble in getting diagnosed early enough to make a difference, getting rehabilitation and medication treatments available to everyone who needs them, and making research funding available to improve the quality of live for those living with COPD. HOW CAN YOU HELP? From Sept 9 until December 2, 2019, Stanford Medicine X will engage with our online community to raise awareness about COPD and engage in collective brainstorming and problem solving around five core questions on COPD. Will you join us? WHO CAN JOIN THE CHALLENGE? Anyone can join the challenge and contribute ideas to improving COPD care and solutions for everyone. You do not have to be registered for our annual fall conference and you are able to participate remotely through social media. If you live locally we encourage you to apply to participate in our live sessions at Stanford University September 20-22, 2019.
2
MEDICINE
“ Knowledge, adherence to medications, and exercise are powerful,” Grace Anne Dorney KOPPEL
Grace Anne Dorney KOPPEL and Ted KOPPEL Dorney-Koppel Foundation
Working with Stanford Medicine X on this year’s Educational Grand Challenge are two leading COPD advocacy experts, Grace Anne Dorney Koppel and Ted Koppel.
OUR MEDICINE X | STUDIO TEAM AND CHALLENGE FACILITATORS
GRACE ANNE DORNEY KOPPEL
Larry Chu, MD, Professor, Stanford University School of Medicine, Executive Director, Stanford Medicine X Program
Grace Anne Dorney Koppel is an educator, a behavioral scientist, and practicing attorney who was diagnosed with COPD in 2001. At the time of her diagnosis she had just 26% lung function and was not expected to live more than a few years. Thanks to pulmonary rehabilitation, exercise and knowledge, “It’s now 18 years since I was diagnosed and I still breathe better now than I did then. Knowledge, adherence to medications, and exercise are powerful,” she says. Grace Anne and Ted are passionate about raising COPD awareness to improve the quality of life for the hundred of millions worldwide who have COPD. Together they created the Dorney-Koppel Foundation and have co-funded 12 pulmonary rehabilitation clinics across the country. TED KOPPEL Journalist Ted Koppel was the anchor and managing editor of ABC News’ Nightline for 26 years, becoming the longest-serving news anchor in U.S. broadcast history. When he left ABC News after 42 years, he was the most honored reporter in that network’s history. He has won every major news award multiple times, including one for lifetime achievement. Ted now serves as CBS Sunday Morning’s Senior Contributor, in which role he just won his 43rd Emmy.
Monika Wittig, Associate Director of Inworks Innovation Initiative at UC Denver Nick Dawson, MHA, National Director for Innovation, Kaiser Permanente Dennis Boyle, Founding Partner, IDEO Audun Utengen, MBA, Partner, Symplur Jean Wright, MD, Chief Innovation Officer, Atrium Healthcare Stella Tu, Design Student, Stanford d.school Serene Chen, MD, Fellow, Kaiser Permanente Urvi Gupta, BS, Stanford University School of Medicine, Stanford Medicine X Program
Our Medicine X | STUDIO team and challenge facilitators will work on our Medicine X Educational Grand Challenge on COPD by helping to guide participants through the challenge steps using online webinars, tweetchats and in-person design sessions during our fall convening. Our design team and facilitators will help engage with diverse stakeholders representing all those living with and affected by COPD in order to develop approaches to key challenge questions that are most relevant and meaningful to the end-users of health care. We call this approach Everyone Incuded and it is a signature way of collaborating and co-producing positive change in the health care system that we use at Medicine X. You can learn more about Everyone Included by participating in this year’s Medicine X Educational Grand Challenge on COPD.
Alicia Staley, MBA, Stanford University School of Medicine, Stanford Medicine X Program Amy Price, DPhil, Stanford University School of Medicine, Stanford Medicine X Program Marcella Debidda, PhD, Chief Patient Officer, monARC Bionetworks
3
DOWNLOADABLE WORKBOOK AND PARTICIPATION GUIDE
Our Medicine X Educational Grand Challenge will be organized into five steps. We invite our Medicine X community to participate with us as we guide you through each of these separate steps of the educational challenge. Don’t worry, over the next few weeks, we will explain each of these steps as the challenge unfolds. Won’t you join us as we explore how we might learn more about COPD and engage together with the greater COPD community to create positive change?
• • • • •
Step 1: EXPLORE: What is it like to live with COPD? [Empathy and Understanding the Challenge] Step 2: SKETCH: Co-produce rough drafts that might address the problem you see. [Prototyping] Step 3: REFINE: Distill your ideas with the help of Everyone Included to the best one that is most impactful and elegant for your community. [Refining] Step 4: IMPLEMENT: Carry out your plan with the help of Everyone Included principles and the COPD Social Media dashboard. [Implementing] Step 5: MEASURE: Select an outcome measure and collect data on the impact of your work using the COPD Social Media dashboard. [Measuring]
TOGETHER, WE WILL EXPLORE FIVE KEY QUESTIONS IN OUR MEDICINE X EDUCATIONAL GRAND CHALLENGE: 1. How might we engage the medical community in the earlier diagnosis of COPD? 2. How might we convince Congress to appropriate line item funding for COPD NIH research consistent with the number of people it affects in the U.S.? 3. How might we reduce the societal stigma of COPD? How might we focus attention on the millions of people who have never smoked, those who got the disease through second hand smoke, environmental and work-related conditions? 4. How might we make access to pulmonary rehabilitation more routine? 5. How might we increase awareness of the evidence-based benefit for prescribing pulmonary rehabilitation for COPD patients? How might COPD rehabilitation treatment be implemented into clinical practice as effectively for people living with the condition as cardiac rehabilitation has been implemented for people living with heart conditions?
4
Our Medicine X Educational Grand Challenge is an opportunity to work with diverse and inclusive groups of health care stakeholders WHAT IS EXPLORE? In this part of the challenge we would like you to gain empathy for and understand what it is like to live with or care for someone with COPD. By gaining empathy for a problem, you can understand the perspectives and needs of the people living with COPD better. And through the process, you can also uncover any pre-existing biases or misconceptions you or others may have about the condition. So EXPLORE is about meeting people and understanding their lives and how COPD has affected how they our their love ones live their lives. HOW CAN YOU PARTICIPATE? Find someone who is living with or caring for someone with COPD. Ask them if they are willing to share some perspectives about their lives. Please keep in mind COPD may be just one aspect of a person’s health story. Consider some questions that may help you understand a person’s whole life:
• • • • •
#COPD is having to think about every breath you take. #medx #grandchallenge
How has COPD changed your life? What are things you don’t spend enough time doing? How has COPD affected that? What gives you hope? What makes you feel most alive? What is the biggest challenge you are facing in your life right now?
SHARE BACK ON TWITTER AND INSTAGRAM From Sept 3 until September 20, 2019, we ask that you share what you are learning with our Medicine X community on Twitter on the hashtag #MedX and on Instagram on the hashtag #MedX. “#COPD is...” #medx #grandchallenge IF YOU DON’T HAVE SOCIAL MEDIA We encourage you to submit your answers and perspectives using our anonymous web survey https://stanfordmedicine.qualtrics.com/jfe/ form/SV_beIhnHDlRx30X4x.
5
MEDICINE
YOUR GOAL Gain an understanding of what it is like to live with COPD or care for someone living with COPD. Share it. Notes:
STEP 1) FIND SOMEONE WITH COPD • COPD group online • COPD grand challenge list • Friends and aquaintances STEP 2) CONVERSATION STARTERS • How has COPD changed your life? • What are things you don’t spend enough time doing? How has COPD affected that? • What gives you hope? • What makes you feel most alive? • What is the biggest challenge you are facing in your life right now? • What has living with COPD taught you about yourself and others? STEP 3) SHARE • “#COPD is...” #medx #grandchallenge • On Twitter and Instagram • Or use our web survey: https://stanfordmedicine.qualtrics.com/ jfe/form/SV_beIhnHDlRx30X4x
6
DOWNLOADABLE WORKBOOK AND PARTICIPATION GUIDE
Join us for the next steps in a few weeks as we give you more information about how to take a deeper dive into Sketch, Refine, Implement and Measure. We will provide additional downloadable guides to help you through the process of sketching solutions to the five key questions to the right, using insights from EXPLORE phase of the challenge. Look for the next educational guide on SKETCH to launch in the next few weeks before the Medicine X | CHANGE conference September 20-22, 2019.
TOGETHER, WE WILL EXPLORE FIVE KEY QUESTIONS IN OUR MEDICINE X EDUCATIONAL GRAND CHALLENGE: 1. How might we engage the medical community in the earlier diagnosis of COPD? 2. How might we convince Congress to appropriate line item funding for COPD NIH research consistent with the number of people it affects in the U.S.? 3. How might we reduce the societal stigma of COPD? How might we focus attention on the millions of people who have never smoked, those who got the disease through second hand smoke, environmental and work-related conditions? 4. How might we make access to pulmonary rehabilitation more routine? 5. How might we increase awareness of the evidence-based benefit for prescribing pulmonary rehabilitation for COPD patients? How might COPD rehabilitation treatment be implemented into clinical practice as effectively for people living with the condition as cardiac rehabilitation has been implemented for people living with heart conditions?
7