AMBASSADOR PROGRAM WORKSHOP WORKBOOK · The PCORI Ambassador Program team thanks the PCORI staff,...

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PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE AMBASSADOR PROGRAM WORKSHOP WORKBOOK SEPTEMBER 17, 2019

Transcript of AMBASSADOR PROGRAM WORKSHOP WORKBOOK · The PCORI Ambassador Program team thanks the PCORI staff,...

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PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE

AMBASSADOR PROGRAM WORKSHOP WORKBOOK

SEPTEMBER 17, 2019

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TABLE OF CONTENTS

Welcome from Ambassador Team ................................................................................................... 3

Acknowledgments .............................................................................................................................. 4

Agenda ................................................................................................................................................. 5

Featured Speakers and Staff ............................................................................................................. 6

Introduction ........................................................................................................................................ 8

Research Perspective: Fostering Stakeholder Engagement through Storytelling Information Sheet ........................................................................................ 10

Skills-Based Session: “Creating a Clearing: Why Stories Matter” ................................................ 12

PCORI Storytelling Resources ......................................................................................................... 14

Ambassador Program Offerings .................................................................................................... 16

Glossary ............................................................................................................................................. 17

Ambassador Workshop Participant Directory .............................................................................. 18

Appendices ....................................................................................................................................... 21

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DEAR AMBASSADORS,

Welcome to Washington, DC, for the 2019 PCORI Annual Meeting! We are excited to meet our newest Ambassadors as well as to see several familiar faces in today’s workshop.

This year’s Annual Meeting theme is Making a Difference: Using Patient-Centered Research Results in the Real World and attendees will learn about how patients, researchers, clinicians, payers, and others across the healthcare community are working to make health research more useful and relevant. In addition, attendees will hear about the latest results of PCORI-funded research, learn about efforts to promote their use in practice, and find out how our unique approach to engaging patients and other stakeholders in the work we do is changing the way health research is conducted. Attendees will also hear about how PCORI can best serve the healthcare community into the future.

Considering the Annual Meeting theme, we have planned a robust workshop that will highlight how Ambassadors are currently working to make health research more useful and relevant and how we can enhance these efforts moving forward. This year, the Ambassador Program Workshop will focus on narrative medicine, otherwise known as storytelling, as a new method to build capacity within the patient-centered outcomes research (PCOR) community and promote uptake of research evidence.

This workshop aims to further harness the energy and passion that Ambassadors have to promote PCORI-funded research results and stakeholder engagement practices nationwide. PCORI recognizes the value of its Ambassadors and their critical role in community capacity building for research evidence uptake. Your participation in this workshop is an important opportunity to help ensure that the value of PCOR is shared with the people and communities who could benefit most. Amplifying your story will make a difference towards shifting the culture of healthcare research to be more patient-centered! Enjoy the Ambassador Program Workshop and the Annual Meeting. PCORI staff look forward to connecting with all of you throughout the Annual Meeting.

Sincerely, Krista WoodwardSenior Program Associate, Public and Patient Engagement, PCORI

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ACKNOWLEDGMENTSThe PCORI Ambassador Program team thanks the PCORI staff, featured speakers, Ambassador panelists, and Advisory Panel on Patient Engagement (PEAP) subcommittee members who have contributed to the planning of the 2019 PCORI Annual Meeting Ambassador Program Workshop.

The PCORI Ambassador Program team members gratefully acknowledge those participating in theworkshop. They acknowledge Julie Eller and Kathleen McTigue along with Ambassador panelists Bill Adams, Matthew Hudson, Bobbie Reed, and Kimberly Richardson for presenting their work toward advancing patient involvement in research and beyond. A special thank you to Chris Wilson for bringing the concept of storytelling to life by facilitating the interactive storytelling workshop session.

The PCORI Ambassador Program team members gratefully acknowledge those who helped provide guidance and input throughout the workshop’s planning process. They acknowledge PEAP subcommittee members Sonya Ballentine, James Harrison, Philip Posner, Ting Pun, Brendaly Rodriguez, Norah Schwartz, Thomas Scheid, David White, and Freddie White-Johnson. They also acknowledge the PCORI Public and Patient Engagement team members for their support and guidance.

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EVENT AGENDA Annual Meeting Ambassador Workshop September 17, 2019 (Noon–6 pm)

Washington Marriott Wardman Park 2660 Woodley Road NW, Washington, DC, 20008

Noon Lunch Available Room Location: Salon 3

1 PM Welcome and Introductions Krista Woodward, MPH, MSW | Senior Program Associate, Public and Patient Engagement, Patient-Centered Outcomes Research Institute (PCORI)

1:15 PM Keynote Speech Julie Eller | Manager, Grassroots Advocacy, Arthritis Foundation

1:45 PM Ambassadors in Action Panel: Storytelling to Support PCOR Capacity Building & Promotion Moderated by Krista Woodward, MPH, MSW | PCORI

3 PM Break

3:20 PM Research Perspective: Fostering Stakeholder Engagement Using Stories Kathleen McTigue, MD, MPH, MS | Associate Professor of Medicine and Epidemiology, University of Pittsburgh Department of Medicine

3:50 PM Skills-Based Session: “Creating a Clearing: Why Stories Matter” Christine Wilson, MA, MS | Vice President of Advocacy Communications and Marketing, National Patient Advocate Foundation (NPAF)

5:50 PM Concluding Remarks & Adjourn

6–8 PM Networking Reception Room Location: Roosevelt 1 Foyer

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WORKSHOP PRESENTERSJulie Eller is the manager of Grassroots Advocacy at the Arthritis Foundation, leading a patient network of 150,000 patient Advocates as they share their story to effect change. Julie has had arthritis since she was seven years old and the Arthritis Foundation has helped her foster a passion for translating the patient experience into advocacy action. Her mission is to elevate patient voices and ensure that they are at the heart of healthcare decisions and design. She is thankful for the opportunity to lead the Advocate and Ambassador Programs, which bring together dedicated volunteers to share their arthritis stories with their state and federal elected officials. Eller is inspired daily by the Arthritis Foundation’s grassroots network and is thankful to help be the voice for those touched by arthritis. She earned a bachelor of science in public health from Stockton University, a small school in her home state of New Jersey.

Kathleen McTigue is a general internist and an associate professor of medicine, epidemiology and clinical/translational science at the University of Pittsburgh. She is the lead principal investigator of the PaTH Clinical Research Network (CRN), a regional collaboration including six sites with academic and health system-affiliated partners. PaTH is one of nine networks that make up PCORnet, enabling access to standardized data as well as tools to help support efficient patient-centered and pragmatic health research. McTigue has served as a CRN representative to the PCORnet Executive Committee and is currently a member of the PCORnet Steering Committee. She is also one of the first investigators to work with PCORnet data as co-principal investigator for the PCORnet Bariatric Study and has a track record of scientific discovery focusing on how body weight influences health, evidence-based weight management, and patient-centered care.

McTigue is keenly interested in the science of stakeholder engagement and has led the development of the MyPaTH Story Booth, an archive of audio narratives describing patient and caregiver experiences with illness and accessing the healthcare system. This archive is used to foster the development of patient-centered research questions and the formation of research teams that include patients and other stakeholders.

Christine Wilson brings deep, broad experience to health communications. She served for many years at Fox Chase Cancer Center in Philadelphia as vice president for communications and marketing, playing a key role in helping the Center achieve recognition as one of the nation’s most respected research and clinical facilities. After leaving Fox Chase, she became senior director of communications at the American Association for Cancer Research, working with top scientists and physicians to advance biomedical research to lay and professional audiences. In that position, she also served as liaison with Stand Up To Cancer, bridging their efforts with the cancer research and treatment world. She then founded her own consulting company, specializing in working with nonprofit and academic institutions. In 2017, she became vice president for advocacy communications with the National Patient Advocate Foundation.

Wilson has a passion for bringing patient voices to the forefront and for making complex medical and scientific ideas understandable to the public. She has a master of arts in English literature from the University of Michigan and a master of science in narrative medicine from Columbia University. She loves putting stories at the center of communications and helping people to understand the uses of narrative and integrate stories into their own communications and lives.

AMBASSADOR PANELISTSBill Adams is a consultant who lives in west central Minnesota and works in government and public policy issues, specializing in healthcare and rural issues. He has been involved with improving the patient experience, lowering health care costs and improving the health of the population. In addition, Bill has been a part of multiple community and national health initiatives, including but not limited to; Lake Region Healthcare Patient and Family Advisory Council, Right Care Alliance Patient Council, Minnesota Shared Decision- Making Collaborative, American Board of Internal Medical Physicians Foundation, Minnesota Community Measurement at Aligning Forces for Quality, Measurement Framework Steering Team of the Minnesota Department of Health initiative, Lown Institute’s Real Best Hospitals Metrics Advisory

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Workshop Presenters Julie Eller is the manager of Grassroots Advocacy at the Arthritis Foundation, leading a patient network of 150,000 patient Advocates as they share their story to effect change. Julie has had arthritis since she was seven years old and the Arthritis Foundation has helped her foster a passion for translating the patient experience into advocacy action. Her mission is to elevate patient voices and ensure that they are at the heart of healthcare decisions and design. She is thankful for the opportunity to lead the Advocate and Ambassador Programs, which bring together dedicated volunteers to share their arthritis stories

with their state and federal elected officials. Julie is inspired daily by the Arthritis Foundation’s grassroots network and is thankful to help be the voice for those touched by arthritis. She earned a bachelor of science in public health from Stockton University, a small school in her home state of New Jersey.

Kathleen McTigue is a general internist and an associate professor of medicine, epidemiology and clinical/translational science at the University of Pittsburgh. She is the lead principal investigator of the PaTH Clinical Research Network (CRN), a regional collaboration including six sites with academic and health system-affiliated partners. PaTH is one of nine networks that make up PCORnet, enabling access to standardized data as well as tools to help support efficient patient-centered and pragmatic health research. McTigue has served as a CRN representative to the PCORnet Executive Committee and is currently a member of the PCORnet Steering Committee. She is also one of the first investigators to work with PCORnet data as co-principal investigator for the

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Workshop Presenters Julie Eller is the manager of Grassroots Advocacy at the Arthritis Foundation, leading a patient network of 150,000 patient Advocates as they share their story to effect change. Julie has had arthritis since she was seven years old and the Arthritis Foundation has helped her foster a passion for translating the patient experience into advocacy action. Her mission is to elevate patient voices and ensure that they are at the heart of healthcare decisions and design. She is thankful for the opportunity to lead the Advocate and Ambassador Programs, which bring together dedicated volunteers to share their arthritis stories

with their state and federal elected officials. Julie is inspired daily by the Arthritis Foundation’s grassroots network and is thankful to help be the voice for those touched by arthritis. She earned a bachelor of science in public health from Stockton University, a small school in her home state of New Jersey.

Kathleen McTigue is a general internist and an associate professor of medicine, epidemiology and clinical/translational science at the University of Pittsburgh. She is the lead principal investigator of the PaTH Clinical Research Network (CRN), a regional collaboration including six sites with academic and health system-affiliated partners. PaTH is one of nine networks that make up PCORnet, enabling access to standardized data as well as tools to help support efficient patient-centered and pragmatic health research. McTigue has served as a CRN representative to the PCORnet Executive Committee and is currently a member of the PCORnet Steering Committee. She is also one of the first investigators to work with PCORnet data as co-principal investigator for the

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PCORnet Bariatric Study and has a track record of scientific discovery focusing on how body weight influences health, evidence-based weight management, and patient-centered care. McTigue is keenly interested in the science of stakeholder engagement and has led the development of the MyPaTH Story Booth, an archive of audio narratives describing patient and caregiver experiences with illness and accessing the healthcare system. This archive is used to foster the development of patient-centered research questions and the formation of research teams that include patients and other stakeholders.

Christine Wilson brings deep, broad experience to health communications. She served for many years at Fox Chase Cancer Center in Philadelphia as vice president for communications and marketing, playing a key role in helping the Center achieve recognition as one of the nation’s most respected research and clinical facilities. After leaving Fox Chase, she became senior director of communications at the American Association for Cancer Research, working with top scientists and physicians to advance biomedical research to lay and professional audiences. In that position, she also served as liaison with Stand Up To Cancer, bridging their efforts with the cancer research and treatment world. She then founded her own consulting company, specializing in working with

nonprofit and academic institutions. In 2017, she became vice president for advocacy communications with the National Patient Advocate Foundation. Wilson has a passion for bringing patient voices to the forefront and for making complex medical

and scientific ideas understandable to the public. She has a master of arts in English literature from the University of Michigan and a master of science in narrative medicine from Columbia University. She loves putting stories at the center of communications and helping people to understand the uses of narrative and integrate stories into their own communications and lives.

Ambassador Panelists Bill Adams became a PCORI Ambassador after attending a PCORI meeting in Minneapolis; he was impressed that patients were at the center of PCORI’s

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PCORnet Bariatric Study and has a track record of scientific discovery focusing on how body weight influences health, evidence-based weight management, and patient-centered care. McTigue is keenly interested in the science of stakeholder engagement and has led the development of the MyPaTH Story Booth, an archive of audio narratives describing patient and caregiver experiences with illness and accessing the healthcare system. This archive is used to foster the development of patient-centered research questions and the formation of research teams that include patients and other stakeholders.

Christine Wilson brings deep, broad experience to health communications. She served for many years at Fox Chase Cancer Center in Philadelphia as vice president for communications and marketing, playing a key role in helping the Center achieve recognition as one of the nation’s most respected research and clinical facilities. After leaving Fox Chase, she became senior director of communications at the American Association for Cancer Research, working with top scientists and physicians to advance biomedical research to lay and professional audiences. In that position, she also served as liaison with Stand Up To Cancer, bridging their efforts with the cancer research and treatment world. She then founded her own consulting company, specializing in working with

nonprofit and academic institutions. In 2017, she became vice president for advocacy communications with the National Patient Advocate Foundation. Wilson has a passion for bringing patient voices to the forefront and for making complex medical

and scientific ideas understandable to the public. She has a master of arts in English literature from the University of Michigan and a master of science in narrative medicine from Columbia University. She loves putting stories at the center of communications and helping people to understand the uses of narrative and integrate stories into their own communications and lives.

Ambassador Panelists Bill Adams became a PCORI Ambassador after attending a PCORI meeting in Minneapolis; he was impressed that patients were at the center of PCORI’s

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Committee, Otter Tail County (MN) Accountable Community for Health Initiative, and the Baby Boomers for Balanced Health Care. Bill has been a PCORI Ambassador since 2014 and has served as a patient member on several PCORI projects. He earned his BA in history, English and philosophy from Macalester College and did graduate work at the University of Minnesota in the College of Business Administration and Department of South Asian Languages.

Matthew Hudson is the director of comparative effectiveness research and cancer care delivery research (CCDR) at Greenville Health System in Greenville, South Carolina. Hudson oversees initiatives examining how social factors, financing systems, organizational structures, health technologies, and provider and individual behavior affect cancer care quality, cost, and access. Hudson co-chaired the National Cancer Institute’s Community Oncology Research Program’s CCDR Coordinating Committee. Hudson is an advisor to the Greenville Health System Health Sciences Center (HSC), a regional collaborative that facilitates clinical-academic partnerships. Through the HSC, Hudson contributes to scholarship on patient-centered models of care; healthcare workforce education and development; and comparative effectiveness of interventions improving healthcare access, clinical practice, and population health. Hudson holds faculty appointments at Clemson University, the University of South Carolina School of Medicine Greenville, and the Arnold School of Public Health, University of South Carolina.

Kimberly Richardson is a survivor of a rare form of ovarian cancer, granulosa cell tumor. She has been active since treatment in various forms of advocacy. Richardson speaks with legislators on the importance of funding for ovarian cancer research, hosts a cycling and running fundraiser for ovarian cancer awareness, and speaks at hospitals and community health fairs on the need for better screening tests to prevent late-stage diagnoses. Currently, her energy is focused on research advocacy in her role as patient advocate for the University of Illinois Cancer Center.

Roberta (Bobbie) Reed has been involved with patient-centered outcomes since her son, then 22 years old, suffered end-stage renal disease. Through navigating his disease, dialysis, wait listing, finding a donor, transplant, and now posttransplant, she learned a lot. Wanting to help others, she became an advocate to help them with their journey by using her skills in sales, communication, and marketing. Reed helped in the development and delivery of the National Kidney Foundation’s Big Ask Big Give program. She has also presented at multiple events about caregiving support. These included the 2018 American Association of Kidney Patients National Patient Meeting, 2018 University of Pittsburgh Medical Center acute kidney injury symposium, 2017 National Academies of Science and Engineering Workshop on Medications and Advocacy at the National Kidney Foundation Kidney Patient Summit in Washington, DC, in 2017 and 2018. Her work experience includes 20 years with AT&T doing sales and marketing. Her educational background includes a bachelor of science from Indiana University of Pennsylvania, majoring in home economics with a concentration in family consumer sciences. Reed also has a minor in business and economics.

PCORI STAFF Krista Woodward is a senior program associate in the Public and Patient Engagement Department at PCORI. She manages the PCORI Ambassador Program and has led the program’s redesign efforts and new programming offerings for the past two years. She supports other aspects of PCORI’s engagement efforts, including the science of engagement with analysis and tool development as well as stakeholder engagement. Before joining PCORI, Woodward was a public health research technician supporting the conduct and analysis of two research studies at Washington University School of Medicine in St. Louis. Woodward received a bachelor of science in psychology from Lafayette College and a dual master of public health and master of social work from Washington University in St. Louis.

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Denese Neu, PhD, is an Engagement Officer at PCORI. In this role, she acts as a liaison between the Engagement and Science teams, helping manage the organization’s research portfolio and assuring engagement of patients and other stakeholders throughout the course of research projects. Before joining PCORI, her Neu’s work focused on the intersection of social policy, health, and community planning. Through this work, sShe gained experience working with a range of patient populations and community issues and served as a PCORI stakeholder merit

reviewer. Denese Neu earned her doctorate PhD in urban studies while working as a health care administrator.

Krista Woodward, MPH, MSW, is a Senior Program Associate in the Public and Patient Engagement Department at the Patient-Centered Outcomes Research InstitutePCORI. She primarily manages the PCORI Ambassador Program and has led the program’s redesign efforts over the past year. Before joining PCORI, Woodward was a Public Health Research Technician supporting the conduct and analysis of two research studies

at Washington University School of Medicine in St. Louis. Her research interests include social determinants of health, environmental injustice, and community engagement methods. Woodward received a BS in pPsychology from Lafayette College and her a dual MPH- and MSW degrees from Washington University in St. Louis. Ambassador Panelists

Matthias Cheung, PhD, RPh, is Adjunct Professor of Pharmacy Practice at in the Thomas J. Long School of Pharmacy at the, University of the Pacific. His interests include rare diseases, comparative effectiveness, and medication adherence research. His Cheung’s pharmacy practice included community and, teaching hospitals, as well as and managed care. He initiated improvement programs for drug use, formularies, and claims-based prescribing analysis.

He held leadership positions in several large pharmaceutical companies, where he developed partnerships for pharmacoeconomic outcomes research, and comparative effectiveness research, and he placed clinical trials at research networks. Matthias Cheung received his BS in pPharmacy and a PhD in pPathology and lLaboratory mMedicine at the University of Wisconsin–Madison. He conducted post-doctoral research in molecular biology at the University of Western Ontario. He is a fellow of the American Society of Health-System Pharmacists and the California Society of Health-System Pharmacists and was a member of the Academy of Managed Care Pharmacy for ovemore thanr 20 years, where he served on many committees.

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Roberta (Bobbie) Reed has been involved with patient-centered outcomes since her son, then 22 years old, suffered end-stage renal disease. Through navigating his disease, dialysis, wait listing, finding a donor, transplant, and now posttransplant, she learned a lot. Wanting to help others, she became an advocate to help them with their journey by using her skills in sales, communication, and marketing. Reed helped in the development and delivery of the National Kidney Foundation’s Big Ask Big Give program. She has also presented at multiple events about caregiving support. These included the 2018 American Association of Kidney Patients National Patient Meeting, 2018 University of Pittsburgh Medical Center acute kidney injury symposium, 2017 National Academies of Science and Engineering Workshop on Medications and Advocacy at the National Kidney Foundation Kidney Patient Summit in Washington, DC, in 2017 and 2018. Her work experience includes 20 years with AT&T doing sales and marketing. Her educational background includes a bachelor of science from Indiana University of Pennsylvania, majoring in home

economics with a concentration in family consumer sciences. Reed also has a minor in business and economics. Erika Szabo has over 18 years of experience in the pharmaceutical industry. She contributes to the unmet need of global population decision makers for scientifically rigorous data that identify appropriate treatment options based on economic, clinical, humanistic, and outcomes variables. Szabo is driven by her patient advocacy to ensure patients and their team of healthcare professionals have the option of choice in their treatment decisions by ensuring payers provide access to treatments. She joined PCORI at its beginning as an Ambassador and merit reviewer. Her active participation in PCORI has provided insights and value to her studies in rare cancers.

PCORI STAFF

Krista Woodward is a senior program associate in the Public and Patient Engagement Department at PCORI. She manages the PCORI Ambassador Program and has led the program’s redesign efforts and new programming offerings for the past two years. She supports other aspects of PCORI’s engagement efforts, including the science of engagement with analysis and tool development as well as stakeholder engagement. Before joining PCORI, Woodward was a public health research technician supporting the conduct and analysis of two research studies at Washington University School of

Medicine in St. Louis. Woodward received a bachelor of science in psychology from Lafayette College

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work. Adams participated in a Eugene Washington Engagement Award project as a member of the Training Advisory Group from 2015 to 2017. The project’s goal was to develop and implement training and curricula to increase the skills and capacity of medical students to engage with patients. Adams has acted as a reviewer of Patient-Centered Outcomes Research Translation Center summaries. He also participates in PCORI’s online webinars and Ambassador Coffee Breaks. Adams has been privileged to attend PCORI national meetings and has taken information from those meetings into his work as a patient voice and consumer representative.

Matthew Hudson is the director of comparative effectiveness research and cancer care delivery research (CCDR) at Greenville Health System in Greenville, South Carolina. Hudson oversees initiatives examining how social factors, financing systems, organizational structures, health technologies, and provider and individual behavior affect cancer care quality, cost, and access. Hudson co-chaired the National Cancer Institute’s Community Oncology Research Program’s CCDR Coordinating Committee. Hudson is an advisor to the Greenville Health System Health Sciences Center (HSC), a regional collaborative that facilitates clinical-academic partnerships. Through the HSC, Hudson contributes to scholarship on patient-centered models of care; healthcare workforce education and development; and comparative

effectiveness of interventions improving healthcare access, clinical practice, and population health. Hudson holds faculty appointments at Clemson University, the University of South Carolina School of Medicine Greenville, and the Arnold School of Public Health, University of South Carolina.

Kimberly Richardson is a survivor of a rare form of ovarian cancer, granulosa cell tumor. She has been active since treatment in various forms of advocacy. Richardson speaks with legislators on the importance of funding for ovarian cancer research, hosts a cycling and running fundraiser for ovarian cancer awareness, and speaks at hospitals and community health fairs on the need for better screening tests to prevent late-stage diagnoses. Currently, her energy is focused on research advocacy in her role as patient advocate for the University of Illinois Cancer Center.

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work. Adams participated in a Eugene Washington Engagement Award project as a member of the Training Advisory Group from 2015 to 2017. The project’s goal was to develop and implement training and curricula to increase the skills and capacity of medical students to engage with patients. Adams has acted as a reviewer of Patient-Centered Outcomes Research Translation Center summaries. He also participates in PCORI’s online webinars and Ambassador Coffee Breaks. Adams has been privileged to attend PCORI national meetings and has taken information from those meetings into his work as a patient voice and consumer representative.

Matthew Hudson is the director of comparative effectiveness research and cancer care delivery research (CCDR) at Greenville Health System in Greenville, South Carolina. Hudson oversees initiatives examining how social factors, financing systems, organizational structures, health technologies, and provider and individual behavior affect cancer care quality, cost, and access. Hudson co-chaired the National Cancer Institute’s Community Oncology Research Program’s CCDR Coordinating Committee. Hudson is an advisor to the Greenville Health System Health Sciences Center (HSC), a regional collaborative that facilitates clinical-academic partnerships. Through the HSC, Hudson contributes to scholarship on patient-centered models of care; healthcare workforce education and development; and comparative

effectiveness of interventions improving healthcare access, clinical practice, and population health. Hudson holds faculty appointments at Clemson University, the University of South Carolina School of Medicine Greenville, and the Arnold School of Public Health, University of South Carolina.

Kimberly Richardson is a survivor of a rare form of ovarian cancer, granulosa cell tumor. She has been active since treatment in various forms of advocacy. Richardson speaks with legislators on the importance of funding for ovarian cancer research, hosts a cycling and running fundraiser for ovarian cancer awareness, and speaks at hospitals and community health fairs on the need for better screening tests to prevent late-stage diagnoses. Currently, her energy is focused on research advocacy in her role as patient advocate for the University of Illinois Cancer Center.

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INTRODUCTIONThis section outlines the Ambassador Program Workshop purpose, goals, and outcomes that will prepare you to participate in the event meaningfully and strategically. The Ambassador Program Workshop will focus on the power of storytelling, otherwise known as narrative medicine, to advance the value and adoption of PCOR in communities nationwide.

BackgroundThere is a dramatic shift in health care and research toward being more human-centered, meaning, looking at the whole person rather than just symptoms. This has been achieved by accounting for a person’s needs, values, preferences, and desired outcomes within the healthcare and research context. One strategy for bolstering human-centeredness has been to leverage storytelling, otherwise known as narrative medicine, to bring patient and other stakeholder voices to the forefront of health research (Capello, L. A., Messervy L., and Kowalczyk, 2015).

What is narrative medicine—storytelling—and how is it used? Narrative medicine is an interdisciplinary field that builds powerful narrative skills with an overlay of creativity from the humanities and the arts to address the needs of all who seek, study, and deliver health care. Narrative medicine enables patients, caregivers, and other stakeholders to voice their experience so that they can be heard, recognized, and valued with the aim of improving the delivery of health care for not only themselves, but for everyone. Narrative medicine is a unique and effective method for infusing your own personal story to advance a greater cause. Every person has their own unique perspective on healthcare decision making and should be accounted for when considering system-level improvements.

Storytelling is already pervasive in all aspects of our lives. It is a tool for empathizing, relating, sharing, and collaborating on important issues from the individual to systemic levels. This can be especially true within the scope of health care and research. However, we can do more to decrease fragmentation and break down the silos within research. Storytelling is a way to do that by providing the much-needed context

that can help researchers, clinicians, and others understand new perspectives or provide an important clue. Alternatively, storytelling to patients and caregivers can provide the necessary training and education to meaningfully partner in research. These stories can coalesce into a greater narrative that underscores the importance of patient and stakeholder engagement and how we can all leverage our experiences to discover new opportunities and foster collaboration within PCOR (Capello, L. A., Messervy L., & Kowalczyk 2015).

To date, storytelling has been adopted by patient advocacy groups, physicians, administrators, caregivers, and other stakeholders within our healthcare system to further advance equity, inclusivity, and quality. Today, we hope to advance the culture of patient-centeredness and to encourage meaningful stakeholder engagement in health research through storytelling. We also hope that the research results coming from PCORI’s funded portfolio can be integrated into personal stories to increase uptake in policy and practice. In this case, patients, clinicians, researchers, and others can share their own experiences and perspectives and tie it into a greater narrative about the value of PCOR.

Storytelling is only one method for spreading the word about the value of healthcare experiences, research partnerships, and findings. However, storytelling is a powerful tool that everyone, including Ambassadors, can leverage to shift our healthcare system and research enterprise to be more patient-centered. The Ambassador Program is a perfect foundation for stringing stories together to create a larger narrative that will reach large, diverse audiences.

PurposePCORI has grown and evolved in recent years. Most notably, our emergent research evidence has started to inform and shape healthcare practice nationwide. A major focus for PCORI has been to strategically disseminate our funded research evidence to ensure it gets into the hands of those who need it most. In a similar spirit, the PCORI Ambassador Program has mirrored this new focus, shifting toward promotion of research results and PCOR practices to enhance healthcare decision making for patients, clinicians, researchers, and more. This workshop will provide an opportunity to hone the skills of promoting PCORI-funded research findings and building the PCOR

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community through storytelling. Ambassadors will learn how storytelling is an effective medium for intertwining personal experiences with research involvement to underscore the value of PCOR and stakeholder engagement. Ambassadors will also learn how storytelling can be adapted for elevator pitches, written pieces, and presentations across diverse audiences.

GoalsThe Ambassador Program Workshop aims to educate Ambassadors about narrative medicine and storytelling techniques to promote PCOR practices and research evidence. As such, the goals for this workshop are to:

1. Conduct a hands-on workshop focused on storytelling to support Ambassadors in their pursuit of shifting health care through their stories,

2. Share tactics and strategies to develop compelling and resonant stories reflecting Ambassadors’ perspectives and experiences to share with diverse audiences,

3. Strategize innovative ways to share Ambassadors’ stories or partner with others

to create a larger narrative that will enhance community action, and

4. Use storytelling to build initiatives and coalitions within and external to the Ambassador Program that will ultimately lead to community and system-level impact.

OutcomesTo measure the success of the Ambassador Program Workshop, we have outlined some desired outcomes:

1. Ambassadors understand how stories can be leveraged to promote the value of PCOR and stakeholder engagement in their own communities,

2. Ambassadors can craft their own story and understand the components of a compelling narrative that ties personal and professional experiences to support PCOR, and

3. Ambassadors understand how to tailor their stories across diverse audiences depending on the audience’s needs and familiarity with research and stakeholder engagement.

 

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Dr. Kathleen McTigue will share methods and findings from the PCORI Engagement Award, “Fostering Stakeholder Engagement Using Patient Stories.”

FOSTERING STAKEHOLDER ENGAGEMENT USING STORIES

Project Summary Patients’ and caregivers’ stories convey rich information about what it is like to be ill, to seek better health, to provide care, and/or to access health services. The MyPaTH Story Booth project, an indexed archive of patient and caregiver stories, can inform the development of people-centered research questions. Story Booth also fosters patient/researcher involvement in research. The archive amplifies patient and caregiver voices, which can inform the development of patient-centered research questions by researchers and can help patients/caregivers understand the perspectives of others with health problems. It also supports team building, bringing together patients and caregivers and health researchers who have shared interests to form partnerships as research teams.

FindingsDiverse stakeholders including patients, caregivers, clinicians, researchers, and educators met in Fall 2018 for a daylong retreat where they deliberated about what is needed for an online forum to support story sharing and team building.*

This activity was followed by a workshop run by StoryCorps in which the Story Booth team learned about how to help storytellers share great stories.

Lessons Learned Include:• Many patient community groups are intrigued

by the concept of patient-centered research but may not be familiar with the concept; open communication about the goals of patient-centered research is useful to support the development of engagement infrastructure and engage community groups in research

• Emerging work about engaging diverse populations may be critical for ensuring adequate representation of important patient communities

• Stakeholders affiliated with this project struggled to balance the goal of amplifying patient stories with that of protecting storytellers from the potential for negative feedback or loss of privacy

• Participants recommended expanding the scope of storytelling to include clinician stories

• To promote effective partnerships, participants recommended that both patients/caregivers interested in engaged research and researchers seeking patient partners be asked to share personal stories

• Participants felt that it was important to minimize filtering of the publicly posted stories and ensure that storytellers’ words were not taken out of context

To date, 17 community groups have partnered with the Story Booth project, as has the PCORI Ambassador Program. Storytellers from those groups have the option to share their stories back with their affiliate groups to help support the groups’ missions.

Resources:Learn more about the project at https://pittplusme.org/studyarms/publicdetails?guid=b19a32bf-1c55-486c-843d-59706fab81e2.

Listen to Story Booth stories at https://www.pathnetwork.org/Community/story_booth.html.

Stay tuned! The new Story Booth website is expected to go live in November 2019.

*This work is funded by a PCORI Eugene Washington Engagement Award (8531-UP).

Project Goals

• To engage patients and caregivers from diverse community partners in the sharing of stories to promote people-centered research

• To develop a patient-centered online forum for sharing stories between patients, caregivers, and clinicians, and fostering research partnerships between researchers and people involved in healthcare decisions.

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Storytellers can choose from questions such as the ones below to structure their story:

• How have you made decisions about what is the right treatment for you?

• Has anyone or anything made those decisions easier? Or more difficult?

• How has your culture or religious beliefs shaped your treatment decisions?

• What it is like to live with [your health issue]?

• In what ways do you look at your life differently now than before you were diagnosed?

• What has it been like for you to receive treatment for this health issue?

• What has been the easiest part of being treated for this?

• What has been the most difficult part of being treated for this?

• What advice would you give someone going through a similar situation?

• What would you like doctors or other healthcare professionals to know when they care for someone with a diagnosis like yours?

• Has this illness changed you? What have you learned?

• How could the healthcare system have improved your experiences?

• If you could change one thing about the healthcare system, what would it be?

Participants at the Story Booth planning event consider how to build a vibrant online community for story-sharing to support stakeholder-engaged research

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In this session, we will work together to understand why stories matter when you are talking about medicine, science, and data. We’ll look at new ways to think about how to tell your story and integrate it effectively into your presentations—and we will do some storytelling and share our voices with each other.

Pre-Workshop Activity:

Prior to the workshop, take some time to think through these questions.

1. Why are you an Ambassador?

2. Was there a defining moment when you chose to become an Ambassador?

3. How does your personal story connect to the larger story of the PCOR community?

4. Was there a moment or time when you thought it was important that your voice be heard?

5. Is there a story that you heard, read, or saw from someone else that really inspired you?

SKILLS-BASED SESSION

“CREATING A CLEARING: WHY STORIES MATTER”

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Notes

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PCORI RESOURCES FOR STORYTELLINGIn order to tell your story, it’s important to include both your personal and professional experiences that have motivated your involvement with health research. Ambassadors have such varied involvement with PCORI, serving as project leads or investigators, partners, and advisors or playing other roles through our research funding program, the Eugene Washington Engagement Awards Program, and other avenues. Given the nature of your involvement, consider how you can tie research evidence, tools, and other products into your story to advance PCOR while also encouraging others to get involved in research. Below are some resources that you can leverage as you craft your story and include PCORI involvement.

Project InvolvementHave you been a part of a PCORI-funded project? If so, you can use a myriad of sources to include information about specific projects you have been or currently involved with.

PCORI-Funded Research Project Pageswww.pcori.org/research-results#search-results

• Project-specific page providing a summary and details• Public and Professional Abstracts — Available for completed projects• Peer Review Summary — Available for completed projects • Final Research Report — Available for completed projects• Affiliated journal articles• Other project resources

Eugene Washington Engagement Award Pages www.pcori.org/research-results?f%5B0%5D=field_project_type%3A299

• Project-specific pages providing background, proposed solution, objectives, activities, outcomes, patient and stakeholder engagement plan, and project collaborators

• Project resources• Affiliated journal articles

Other PCORI ProductsIf you haven’t been formally involved in a PCORI-funded project, there are plenty of PCORI-developed resources that can be used and integrated into your story.

• PCORI Fact Sheets: www.pcori.org/about-us/fact-sheets• PCORI Topic Pages: www.pcori.org/topics• Engagement in Health Research Literature Explorer:

www.pcori.org/literature/engagement-literature• PCORI-Funded Evidence Synthesis Products: www.pcori.org/research-results/evidence-synthesis

• Evidence Updates: www.pcori.org/research-results/putting-evidence-work/evidence-updates

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AMBASSADOR PROGRAM OFFERINGSThe Ambassador Program offers a wide range of activities for members. If you would like to learn more, please visit our website at www.pcori.org/engagement/engage-us/pcori-ambassador-program or email PCORI staff at [email protected].

Ambassador Calls to Action NewsletterIn addition to our quarterly newsletters, we send bimonthly newsletters to all Ambassadors with calls to action, which are concrete ways to promote and share information about PCORI and PCOR to their networks. We might ask Ambassadors to share a new blog/editorial piece, peer-reviewed article, PCORI-developed product, or research result using social media, email, or other channels. We hope that these calls to action mobilize and inspire Ambassadors to continue sharing information about cutting edge PCOR research as well as PCORI updates. We will also provide a standing list of bonus calls to action in order to capture all the great activities that Ambassadors do on a regular basis. We hope to track activities so they can be shared with PCORI staff so that we can have a deeper sense of the program’s impact!

Please review each bimonthly newsletter for an archive of all calls to action and bonus activities.

Ambassador Mentor ProgramNew Ambassadors have the optional opportunity to be paired with a longstanding Ambassador through the Ambassador Mentorship Program. Mentorship helps onboard new Ambassadors and welcome them into the community, and ultimately aims to promote development of skills needed to be actively involved in PCORI’s Ambassador Program.

Ambassador mentors will have opportunities to further develop leadership skills and learn about emerging trends from new Ambassadors. Ambassador mentees will gain a trusted advisor and will have enhanced involvement in the Ambassador Program. Both will form professional relationships and share their professional, research, and advocacy interests and connections.

Please review the Ambassador Mentor Packet at www.pcori.org/sites/default/files/PCORI-Ambassador-Mentor-Program-Booklet-June2019.pdf to learn more and sign up.

Ambassador CenterThe Ambassador Center is an online tool that creates a stronger network among the Ambassadors by providing information about Ambassadors’ organizational affiliations and roles, involvement with PCORI research and activities, and specific PCOR interests. It also enables Ambassadors to search for and connect with other Ambassadors based on their location, stakeholder type, conditions of interest, and more. The Ambassador Center allows the community to facilitate partnerships both within and outside the network for potential research partnerships, speaking engagements, and more.

Visit the Ambassador Center and the Who are PCORI’s Ambassadors? page on the PCORI website.

Ambassador Coffee BreaksThe Ambassador Program Coffee Breaks are 20-minute webinars that provide brief program updates and Ambassador spotlights. Over the last year, the series has offered peer-learning opportunities and highlighted new aspects of the program.

Find archived recordings of previous Coffee Break webinars on Yammer and in the Resources area of the Ambassador Program section on the PCORI website.

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Ambassador Online TrainingOur programmatic online training equips Ambassadors with the necessary content expertise and skills to effectively communicate and share information surrounding PCORI, PCOR, the Ambassador Program, and stakeholder engagement.

The updated training is not mandatory, but PCORI staff highly recommend that Ambassadors, both new and longstanding, complete the training. It will provide a refresher on knowledge about PCORI and will introduce the Ambassador Program.

If interested, please complete an interest form to take the new training. If you already have completed an interest form, you can log in to your profile and request to take the training. You can find the interest form on the Get Involved page on the PCORI website at www.pcori.org/engagement/engage-us/pcori-ambassador-program/get-involved.

The Ambassador Program is a volunteer network of individuals dedicated to changing the culture of health research. Its mission is to engage healthcare stakeholders in strengthening the patient-centered outcomes research (PCOR) community while increasing the reach and influence of PCORI-funded research.

In their communities and nationally, Ambassadors are shifting how research is being done by partnering with researchers, leading engagement initiatives, setting priorities, and spreading the word about the importance of stakeholder-engaged research.

We encourage individuals of all professional and educational backgrounds to become an Ambassador.

To become an Ambassador, have interested participants complete an interest form at http://bit.ly/PCORIAmbassador

Encourage Others to Become a PCORI Ambassador

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GLOSSARYThe glossary provides working definitions of key concepts introduced during the Ambassador Program Workshop. Please refer to these terms throughout the workshop for clarification and direction.

Community: Any group of people that you identify as belonging to. Your community can be defined by geographic location or by a shared characteristic, interest, experience, identity, or goal. A community can also exist virtually or physically and in any sphere of your life. Examples of communities are faith-based organizations, colleagues, and condition-specific support groups.

Dissemination: The intentional, active process of identifying target audiences and tailoring communication strategies to increase awareness and understanding of evidence and to motivate its use in policy, practice, and individual choices.

Evidence: The available body of facts or information that supports or counters a scientific theory or hypothesis. Examples of evidence that PCORI-funded projects produce are peer-reviewed scientific articles, PCORI’s lay and professional abstracts, and PCORI evidence updates.

Narrative Medicine: An interdisciplinary field that brings powerful narrative skills of radical listening and creativity from the humanities and the arts to address the needs of all who seek and deliver health care. Narrative medicine enables patients and caregivers to voice their experience, to be heard, to be recognized, and to be valued, improving the delivery of health care.

Narrative: Refers to the many stories that make up one’s own personal history. Narrative is the web of which each story, each tale told, is one strand. Throughout our daily experiences, the evolving stories that make up our narrative provide the common thread that allows us to incorporate new information into our understanding.

Story: An account of past events in someone’s life or in the evolution of something. A story may be one component of a person’s entire narrative.

Targeting: The efforts to reach intended communities with the goal of evidence uptake.

Tailoring: The efforts to adapt information and evidence to target communities.

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DIRECTORY OF AMBASSADOR SCHOLARSHIP RECIPIENTS

Scholarship Recipient Name Affiliated OrganizationBill Adams Patient Advocate/ConsultantJacqueline Alikhaani PCORI/American Heart Association Ambassador, UCLA

Volunteer Patient Advocate, Congenital Heart Patient/Survivor/International Patient Advocate

Sadegh Alikhaani CaregiverPeter Anderson Research AdvocateHoa Appel University of Washington BothellMary Baliker SIDM Patients Improve Research Diagnosis, National Kidney

FoundationBrian Bankes PREPARE NOWCherie Binns MS PPRNTerrie Black Association of Rehabilitation NursesGloria Boone Georgia Southern University Jiann-Ping Hus College of Public

HealthMickie Aerne Bowe Kaiser PermanenteCrystal Brown-Tatum Sisters NetworkKorey Capozza Global Parents for Eczema ResearchMartie Carnie Brigham and Women’s HospitalMatthias Cheung University of the PacificLatania Dodd Fannie Lou Hamer Cancer Foundation, Mississippi State

Department of Health, MedEd ServicesAlexandria Domingo USF St. PetersburgMichael Duenas American Optometric AssociationMat Edick Michigan Public Health InstituteAmy Eisenstein CJE SeniorLifeDale Fiedler SIHF HealthcareValerie Fraser Inflammatory Breast Cancer International Consortium (IBC-IC)Emily Godfrey University of WashingtonRegina Greer-Smith Healthcare Research Associates LLCMonique Guishard The Bronx Community Research Review BoardRay Haeme Research AdvocateCarolyn Hampton Research AdvocateBruce Hanson Research AdvocateSharon Holder Clemson UniversityLibby Hoy PFCCpartnersDeborah Hunt College of New RochelleSalman Hussain Research Advocate

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Scholarship Recipient Name Affiliated OrganizationDeborah Jacobson University of UtahRichard James Mended Little HeartsWenora Johnson Fight CRCLucretia Jones Bronx Community Research Review Board,

NYC Dept of Health & Mental HygieneCharlotte Kauffman NAMIShabina Khan CapricornLaura Kolaczkowski iConquerMS/Accelerated Cure Project for MSKatina Lang-Lindsey A PCORI Patient Co-Investigator on PREPARE NOW Project and

an Assistant Professor at Alabama State UniversityAlyssa Lanzi University of South FloridaMegan Lewis RTI InternationalSusan Lin MGH Institute of Health ProfessionsKimberly Martin Epilepsy Foundation Central & South TexasKathleen McTigue University of Pittsburgh Department of MedicineLoretta Medellin Research AdvocateMichael Mittelman American Living Organ Donor Fund, The BMJKelly Morales El Futuro, Inc.Nancy Netherland Research AdvocateChristie North Research AdvocateRebecca Olsen BayCare Health SystemsMary Grace Pagaduan Afya FoundationBrandy Parker-McFadden My Epilepsy StoryCorella Payne Research AdvocateTracy Perkins Research AdvocateJane Perlmutter MultipleNeha Reddy Pidatala American Cancer SocietyLaurel Pracht NRG OncologyTing Pun Research AdvocateRoberta Reed National Kidney FoundationGwendolyn Richardson Research AdvocateJamie Roberts Duke Clinical Translational Science InstitutePhyllis Rodgers Peer Plus Education and Training AdvocatesJessica Sand NAPCRGClaire Santos Allclaire Health Communication LLCLeonard Schwartz Research AdvocateBetty Scull Strategies to Reduce Injuries and Develop confidence in Elders

(STRIDE) National Patient and Stakeholders Council MemberRebecca Seago-Coyle Research AdvocateMaureen Smith Canadian Organization for Rare DisordersDominique Stevens-Young Serenity Life Management Group

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Scholarship Recipient Name Affiliated OrganizationErika Szabo Teva PharmaceuticalZohreh Talebizadeh Children’s Mercy HospitalRachelle Tepel GWU CABJanice Tufte UW CERTAIN Patient Advisory NetworkDaniel van Leeuwen Health HatsShilpa Venkatachalam Global Healthy Living Foundation/CreakyJointsCurtis Warfield Research AdvocateSusan Wozniak National Patient Advocate Foundation, Advocacy VolunteerColleen Zak ARPKD/CHF AllianceGeorgiann Ziegler University of Michigan Department of Medicine

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APPENDICESThese appendix materials are provided for storytelling support after the Ambassador Workshop. Please review and utilize these materials as you continue to refine your narrative.

Appendix 1. Narrative Components

All of these elements are components within your narrative. These critical questions help to “paint the picture” of why you got involved in patient-centered outcomes research and why others should get involved, too. When framing your overall narrative, try to think of all the different experiences that answer these questions in the figure below.

What?What changes do you

hope to see through your involvement in PCOR?

What challenges do you still face that impact your

involvement?

What PCOR projects are you involved in that are

helping to create change?

Who?Who are you? What are

your values, motivations, and attitudes? How do

they relate to health care and research?

What experiences shaped you and your

perspectives on health care and research?

Why?Why did you first get

involved in PCOR?

Why do the issues that you work on matter?

Where?Where did your

motivation come from?

Where are you now in your PCOR story?When?

When did you decide to get involved in PCOR?

How?How do you want to

create change?

How will you leverage your story to support and

grow PCOR?

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Appendix 2. Personal Narrative Organizing Worksheet

Reflect on the figure in Appendix 1 and jot down some notes below that will make up your narrative. Take some time to write down your responses and share with others.

Who?

Why?

Where?

When?

How?

What?

Cited from Make it Work & Wellstone. Telling Your Story. Retrieved from http://www.makeitworkcampaign.org/wp-content/uploads/2016/02/Telling-Your-Story1.pdf

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Appendix 3. Narrative Challenge, Choice, and Opportunity Organizing Worksheet

While reflecting on your story that led to your involvement in PCOR, jot down some notes in the figure below. Reflect on your challenges and successes within the healthcare system, choices for treatment and/or research, and any meaningful opportunities to get involved in PCOR.

Your Challenge

Your Choice

Your Success

Cited from Make it Work & Wellstone. Telling Your Story. Retrieved from http://www.makeitworkcampaign.org/wp-content/uploads/2016/02/Telling-Your-Story1.pdf

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Appendix 4. Group Storytelling Worksheet

Now that you have started to frame up your personal story within the context of PCOR involvement, answer the following questions with others in your team.

1. What themes do you find you have in common?

2. How are your challenges and successes similar to other Ambassadors?

3. How are your PCOR involvement experiences similar to other Ambassadors?

4. How does your opportunity and action connect to others?

Cited from Make it Work & Wellstone. Telling Your Story. Retrieved from http://www.makeitworkcampaign.org/wp-content/uploads/2016/02/Telling-Your-Story1.pdf

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Appendix 5. Health Information Organizer

There is so much research published on different conditions and illnesses every day. You can learn how others have navigated health experiences or research endeavors through a multitude of outlets including books, memoirs, newspaper and magazine articles, or films about health challenges. This worksheet will help you manage and organize all the information that you have encountered over the years. (Capello, L. A., Messervy L., & Kowalczyk 2015)

1. Main themes or ideas

2. Things you learned that resonated with you

3. Things you learned that surprised you through PCOR involvement

4. New questions or topics to explore in future PCOR involvement

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