GHLF’s New Dissemination Playbook for Patient Advocacy Organizations
A comprehensive, step-by-step guide designed to help patient advocacy organizations and health care professionals get research into the hands of patients who need it most.
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About the Playbook
We know research can be complicated and doesn’t always reach the patients who need it most in a way that’s clear and actionable. The Dissemination Playbook is a free, easy-to-follow guide for sharing accurate, trustworthy information with your patient community. It breaks down what dissemination is, why it matters, and how patient advocacy organizations and health care professionals can plan the best ways to deliver the right message to the right people.
How the Playbook Can Help You
BY USING THIS GUIDE, YOU CAN:
Your Roadmap to Sharing Research
Imagine planning a road trip. You map out the most important stops to make your journey smooth and successful. That’s exactly how this Playbook works — it helps you plan the best route to share research, step by step. Not every step will apply to every situation, and that’s okay. Just focus on the ones that are most important for your goals.
Who Is the Playbook For?
This Playbook is for patient advocacy groups and health care professionals who want to:
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Frequently Asked Questions
Is the playbook free?
Yes, the playbook is completely free to use and download.
How do I cite the playbook?
Please use the following citation to reference the playbook:
S. Venkatachalam, et al. Dissemination Playbook for Patient Advocacy Organizations. 2024. https://ghlf.org/dissemination-playbook
Can the playbook be used for different types of health conditions?
Absolutely! Disseminating research across communities applies to any condition. Everything within the Playbook can be applied to any type of research you wish to share.
How long will this take?
Because the Playbook is designed to be customizable, you can skip chapters to find the information that you need. Plan to spend 10-15 minutes reading through a chapter and considering how the information could impact your organization’s dissemination effort.
Your timeline for dissemination depends on the scope of what is being disseminated and will be different for every dissemination project.
I work in a very niche space, will this work for me?
Yes, the Playbook is designed for anyone to adapt the book’s broad recommendations to suit the specific needs and preferences of their niche patient community. This might involve customizing the language, format, and channels used to share research, ensuring that it resonates with the unique characteristics and health concerns of their intended audience.
What tools are included in the playbook?
The Playbook includes dissemination tools, including the “Partners in Action Forms” for gathering feedback from patients and partners. These forms helped shape relevant, culturally sensitive strategies. Blank forms in the Appendix are available for organizations. The Playbook also offers guidance on identifying target audiences and sharing evidence-based information effectively.
Are there real-world examples or case studies in the Playbook?
Yes, the Playbook includes real examples and case studies, particularly through its “Partners in Action” sections in Chapters 3-10. These sections highlight how patient feedback was integrated into the development of dissemination strategies. Examples in this section may spark ideas for you to adapt strategies that meet the needs of your organization and your dissemination effort. Patients were involved from the start, providing continuous input through meetings and Partners in Action Forms, ensuring the strategies were relevant, understandable, and culturally sensitive. The Playbook emphasizes collaboration and offers blank forms in the Appendix to guide others in applying similar evidence-based dissemination approaches.
Can I contact you if I have questions about dissemination?
Absolutely! Please contact us if you have questions. If you read the Playbook and find that you want additional support in designing your dissemination plan, see the information below about collaborating with us. Reach out to us at [email protected]
Playbook in Action
At GHLF, we take care in connecting patients with research that helps them become informed patients who can advocate for themselves and work with their providers to reach their health goals.
The ideas in our Dissemination Playbook relate to our patient community as well as the GHLF team itself, with many members of our staff living with or caring for people with chronic conditions. We see the benefits of connecting patients with the right research daily and through this guide hope that you can, too.
CreakyJoints.org
A global digital community offering support, education, and advocacy for arthritis patients and caregivers.
PatientSpot App
An app for chronic conditions to track treatments and symptoms, and export reports to share with your doctor.
Patient-Friendly Research News
Research translated into patient-friendly language patients can relate to and take better control of their care.
Vaccine Advocacy
A comprehensive guide for trusted vaccine safety information and resources.
The HEROES Program
An educational program that empowers salon professionals to support clients with scalp and skin conditions.
Our Podcast Collection
Immerse yourself in stories and insights with our captivating podcast collection.
Connect With Us
Do you or your organization have creative or innovative ways to connect patients with research? We want to hear what works — and even what doesn’t!
Share your insights and collaborate with us to make our Playbook even more effective for reaching patients. Let’s work together to make a bigger impact. Send us a message here or email us at [email protected]
Our Playbook Team
We would like to acknowledge and extend our gratitude to the many individuals who contributed their ideas and expertise to help this project meet its goal of helping patient advocacy organizations and health care professionals get research into the hands of patients who need it most.
This project was funded by the Patient-Centered Outcomes Research Institute (PCORI). We extend our gratitude to our program officers at PCORI for their support and feedback throughout this project.
Meet the Patient Advisory Team
Aberdeen Allen Jr.
Sara King-Dowling
Ashley Krivohlavek
Chantelle Marcial
Nerida Zapata
Meet the Patient Advocacy Organization Advisory Team
Ronald R. Browder, Ohio Federation for Health Equity and Social Justice
Cat Charrett-Dykes, Chronic Migraine Awareness Inc.
Carol Moss Chapman, Crohn’s & Colitis Foundation
Penny Mitchell, Lupus Research Alliance
Hannah Norris, AIDS United
Lynn Wilson, Myositis Support and Understanding
Meet the Clinical and Technical Advisory Team
Jeffrey Curtis, MD, MS, MPH
Laurie J. Ferguson, PhD
Elaine Husni, MD, MPH
Susan Nowell, DPT
Dissemination Playbook Terms of Use
The purpose of the Playbook is to provide a framework and methods for Patient Advocacy Organizations to disseminate PCOR and CER to patient populations and their caregivers.
Using the methods described in the Playbook does not guarantee results and there is no warranty associated with its use. By using this Playbook, you agree that you rely on this Playbook at your own risk and the Global Healthy Living Foundation has no liability to you for any claim arising from your use of the Playbook.
The GHLF Playbook Team
Shilpa Venkatachalam, Chief Patient Centered Research and Ethical Oversight Officer
Shelley Fritz, Manager, Patient-Centered Engagement and Insights
Angela Degrassi, Senior Manager, Patient Centered Research and Engagement
Laura Stradford, Associate Director, Patient Centered Research and Epidemiology
Susan Jara, Director, Patient Education
Ben Blanc, Associate Director, Digital Production and Engagement
Erik Stone, Associate Director, Learning Experience Design
James Dybisz, Associate Director of Technology
Ruohan Hong, Research Fellow
Emily Bergin, Research Fellow
About the Global Healthy Living Foundation
The Global Healthy Living Foundation is a U.S. based, 501(c)(3) nonprofit, international organization whose mission is to improve the quality of life for people with chronic illnesses by advocating for improved access to health care through education, patient-centered clinical research, support, advocacy, and economic and policy research. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the international, digital community for millions of people living with arthritis and their supporters worldwide who seek education, support, activism, and patient-centered research in English, Spanish, and French. In addition to arthritis and autoimmune disorders, GHLF supports dermatology, gastroenterology, neurology, cardiology, oncology, infectious disease, rare disease, and pulmonary patients through a host of different programs and activities.