MJFF Patient Engagement Request Form MJFF Patient Engagement Request Form | Template Shared by PALADIN Member Sample request form that Patient Advocacy Groups can use when pharmaceutical companies want to engage in a partnership View & Download Here
HealthMatch Report: Quantifying Diversity, Equity and Inclusion in Clinical Trials HealthMatch Report: Quantifying Diversity, Equity and Inclusion in Clinical Trials A report with findings from a large clinical trial patient engagement survey. Users on the HealthMatch platform and received 7,903 responses among patients. Questions explored interactions with the health system, Read more…
Inclusion by Design: Building Equity in Clinical Trials Through the Lens of Metastatic Breast Cancer Inclusion by design: building equity in clinical trials through the lens of metastatic breast cancer | The Health Policy Partnership Wilcox H, Wheeler E, Wait S. 2023. Inclusion by design: building equity in clinical trials Read more…
University of Maryland Patients Program University of Maryland Patients Program | UMD | Example The PATIENTS Professors Academy offers a complimentary 5-week program conducted entirely online, featuring interactive elements facilitated by our patient advisors and subject matter experts. View Here
MS Minority Research Engagement Toolkit MS Minority Research Engagement Toolkit – Researchers | MS Minority Research Engagement Partnership Network (MS MREPN) Tools and discussion guides, evidence-based research on patient perceptions, resources for identifying community leaders and reaching out to different groups, and educational materials. These tools are intended to help Read more…
NIH All of Us Research Program All of Us Research Program | NIH The NIH All of Us Research Program provides an opportunity for everyone who wants to participate to provide health data to help build one of the most diverse health databases in history to help researchers learn how Read more…
Allergy and Asthma Network Trusted Messenger Community Program Allergy and Asthma Network Trusted Messenger Community Program | AAN The AAN has developed a Trusted Messenger Community Program with Sanofi that provides free online health screening, offers a six week respitory health program, and provides access to free resources. View Here
Tigerlilly Angels Program Tigerlilly Angels Program | Tigerlilly The Tigerlilly Angel Advocacy Program is model for comprehensive training in community advocacy. The Angel Advocacy Program trains women of color between the ages of 21 and 50, who have been impacted by breast cancer to become more knowledgeable about the disease Read more…
Assessing the Financial Value of Patient Engagement: A Quantitative Approach from CTTI’s Patient Groups and Clinical Trials Project Assessing the Financial Value of Patient Engagement: A Quantitative Approach from CTTI’s Patient Groups and Clinical Trials Project | Article “In a 2017 article, a novel approach was introduced for assessing the Read more…
CIOMS Working Group XI – Patient Involvement CIOMS Working Group XI – Patient Involvement | CIOMS Published in 2022, this report underscores the essential role of patient involvement throughout the entire lifecycle of medicine, from early development to regulatory processes and ongoing healthcare usage. It offers a comprehensive overview of Read more…
Enhancing the Diversity of Clinical Trial Populations — Eligibility Criteria, Enrollment Practices, and Trial Designs Guidance for Industry Enhancing the Diversity of Clinical Trial Populations — Eligibility Criteria, Enrollment Practices, and Trial Designs Guidance for Industry | FDA Guidance for sponsors intended to support a new drug application or a Read more…
Developing and Submitting Proposed Draft Guidance Relating to Patient Experience Data Developing and Submitting Proposed Draft Guidance Relating to Patient Experience Data | FDA An overview of patient experience data draft guidance. View Here
FDA Patient-Focused Drug Development Guidance Series for Enhancing the Incorporation of the Patient’s Voice in Medical Product Development and Regulatory Decision Making FDA Patient-Focused Drug Development Guidance Series for Enhancing the Incorporation of the Patient’s Voice in Medical Product Development and Regulatory Decision Making | FDA A four-part series of Read more…
CDER Patient-Focused Drug Development CDER Patient-Focused Drug Development Overview of PFDD (Patient-Focused Drug Development). View Here
MS Minority Research Engagement Toolkit – Clinicians MS Minority Research Engagement Toolkit – Clinicians | PCORI Tools and discussion guides, evidence-based research on patient perceptions, resources for identifying current opportunities, and educational materials to download for your patients. View & Download Here
Touch, the Black Breast Cancer Alliance Touch, the Black Breast Cancer Alliance Touch, The Black Breast Cancer Alliance drives the collaborative efforts of patients, survivors, advocates, advocacy organizations, health care professionals, researchers, and pharmaceutical companies to work collectively, with accountability, towards the common goal of eradicating Black Breast Cancer. Learn Read more…
DIA Patient Centricity Research Summary Results DIA Patient Centricity Research Summary Results | DIA Results from the 2016 study that benchmarks adoption and impact of patient-centric initiatives in drug development. This research aimed to measure the impact of patient engagement across research and development. This is the first-of-its-kind research to Read more…
Patient Engagement in Medicines Development: Recommendations on How to Find the Right Match for the Right Patient Engagement Activity Patient Engagement in Medicines Development: Recommendations on how to find the right match for the right patient engagement activity | IHI (formerly IMI) PARADIGM PARADIGM: Guidance for Industry and PAGs providing Read more…
Public Workshop on Enhancing the Incorporation of Patient Perspectives in Clinical Trials Public Workshop on Enhancing the Incorporation of Patient Perspectives in Clinical Trials | CTTI and FDA Workshop on ideas for best practices and key considerations for enhancing the incorporation of patient perspectives on clinical trial access, design, conduct, Read more…
Patient Engagement Patient Engagement | National Health Council Guidance for PAGs on fairly and adequately capturing patient voice in clinical research. Learn More Here