Research Advocate Training & Resources

Transcription

1 Research Advocate Training & Resources Training for Human Subject Research Human Subject Protection Training Certification The NIH training module can be found at: Click on the highlighted "Protecting Human Research Participants. You can download the entire PDF of the training for reference. There are very short quizzes at the end of 4 sections, the answers can be found in the PDF if you can t remember. Optional Trainings US Cochrane Center: Understanding Evidenced-Based Healthcare This web course has been created by the United States Cochrane Center as part of a project undertaken by Consumers United for Evidence-based Healthcare (CUE), and is designed to help consumer advocates understand the fundamentals of evidence-based healthcare concepts and skills. Registration is open and free of charge. Participants are encouraged to finish the course in three months. We recommend that participants complete only 1-2 modules at a time. Participants must commit to filling out evaluation forms upon completion of each module. Cancer Information and Support Network (CISN) offers multiple trainings. Below are links to various sections. CISN instructions - CISN e-training/quiz1-cancer This training is intended for advocates, patients and anyone else who would like a basic understanding of what cancer is. Everyone is encouraged to start here as vocabulary and basic concepts are introduced at this point. CISN e-training/quiz2-what We Know About Cancer This training will test your knowledge of cancer at a more advanced level. It includes questions on basic biology as well as advances in cancer research including the "OMICS" revolution and personalized medicine. CISN e-training/quiz3-how Cancer is Studied This training is designed to test your knowledge of each field of cancer research including their methods and tools. 1

2 CISN e-training/quiz4-drug Development This training is designed to test your knowledge about the drug development process including target identification, the regulatory process and the stakeholders involved. CISN e-training/quiz5-new Horizons in Cancer Treatments This training is designed to test your knowledge about the recent advances in cancer diagnosis and treatment plus the new tools needed. CISN e-training/quiz6-personalized Medicine This training is designed to test your knowledge of personalized medicine including ethics, tissue donation and molecular diagnostics. Other Resources 2015 on-line Webinars developed for National Clinical Trials Network Advocates by CISN All Webinars from : CISN webinar: How Cancer is Studied: CISN webinar: Drug Development: CISN webinar: Clinical Trials 201: Research Advocacy Network/Advocate Institute Research Advocacy Network Research Engagement Advocate Institute Precision Medicine in Oncology online course Webinars & Recorded Lectures Resources: Tutorials American Association of Cancer Research (AACR): Educational Series on Science and Advocacy contains articles designed to help cancer survivors and patient advocates learn about and explore cancer research and advocacy. CATIONAL-SERIES-ON-SCIENCE-AND-ADVOCACY 403E94.ASPX -.Vz3w16Pru00 2

3 NCI s Office of Advocacy Relations Research Advocacy at NCI Webinar: Research Advocacy Department of Defense Congressionally Directed Medical Research Program s Consumer Involvement. The program integrates consumers into the peer review process for awarding research grants. Understanding Clinical Trial Design: A Tutorial for Research Advocates: Authored by Jane Perlmutter, PhD, for Research Advocacy Network s Advocate Institute (PDF available at no cost, download link below) The American Society of Clinical Onlogogy (ASCO) - ASCO Post sign up for regular updates Research Advocacy General References Cancer Research Advocacy: Past, Present and Future. Jane Perlmutter et al. Cancer Research. 2013;73: Patient Advocates Role in Clinical Trials. Mira Katz et al. Cancer. 1 October 2012: Swimming Upstream: An Advocate Reflects on Cancer Research and Social Realities. Musa Mayer, JCO (16) Patient Advocacy in Research. Musa Mayer, (2) Seeking What Matters, Patients as Research Partners. Link Musa Mayer. Editorial. Patient 2012:5 (2): Glossaries The Alliance: 2FGlossary CISN: NCI Cancer Terms: NCI Drug Dictionary: 3

4 FDA glossary of terms: FDA Drug Development and Review Definitions - ved/approvalapplications/investigationalnewdrugindapplication/ucm htm De-jargon Medical Jargon CanTeen (The Australian Organization for Young People Living with Cancer)! Rice University MedicineNet.com, a list of Common Medical Abbreviations and Acronyms, Writing a Lay Abstract PRISM (Program for Readability In Science & Medicine) Toolkit Readability Formulas: Free Text Readability Consensus Calculator Transcend: Because words matter. Plain Language o Plain Language = Better Health Care o How to Measure the Grade Level of Your Document Book - Covering Medical Research: A Guide for Reporting on Studies Published by the Association of Health Care Journalists. Available free on the website: Toolkit for Journalist & Consumers Check it out! May want to sign up for their Newsletter. Our 10 Review Criteria for reviewing news reports Tips for analyzing studies, medical evidence & health care claims MD Whistleblower peeking behind the medical curtain FDA Patient Programs Patient Representative Program: Patient Focused Drug Development Initiative: Patient Engagement Advisory Committee (NEW): sorycommittee/default.htm 4

5 Trainings at National Meetings Alamo Breast Cancer Foundation at San Antonio Breast Cancer Symposium (SABCS)- Scientist <-> Survivor Program at American Association for Cancer Research (AACR) Annual Meeting Focus on Research Scholars Program at American Society for Clinical Oncology (ASCO) Annual Meeting - Accelerating Anti-cancer Agent Development and Validation (AAADV) - Scholarships for Patient Advocates Other Initiatives involving clinical research Clinical Trials Transformation Initiative CTTI makes the guidelines, recommendations and tools publically available on their website to spur widespread dissemination and implementation. Recommendations and Tools for: Informed Consent InformedConsent-Recs.pdf Effective Engagement with Patient Groups around Clinical Trials Efficient & Effective Clinical Trial Recruitment Planning Data Monitoring Committees Recommendations.pdf Multi-Regional Clinical Trials Center MRCT allows only sponsors to access their recommendations and tools. A list of sponsors is on their website. Data Sharing & Transparency Initiative Post-Trial Responsibilities Informed Consent: Ethical Frameworks regarding data sharing Return of Aggregate Results to Participants Return of Individual Results to Participants Causality Training (Global Standards) 5

6 Data Safety Monitoring Boards: Training Protocol Ethics: Ethical Frameworks The Center for Information & Study on Clinical Research Participation (CSCRIP) Learn about Clinical Research Communicating results Patient Advisory Board Panels Medical Heroes Campaign Training, Guidance & Tools for Serving as an Advocate on Research Grants FORCE Research Advocate Training (FRAT) Program Research Advocate Program Susan G. Komen Advocates in Science (AIS) Guidelines for Advocate Involvement in Komen Funded Research Webinars o How Advocates & Researchers Can Work Together on Komen-funded Research o The Call to ARMs: Advocates, Researchers, Mentors National Breast Cancer Coalition Project LEAD Institute (Note: Deadline for applying for the 2017 Institute - June 1, 2017) Financial Toxicities of Medical Treatment Statistics o NCI: Financial Toxicity & Cancer Treatment o Cost of Cancer Care: Financial Toxicity Facts (University of Chicago) Financially toxicity is a clinically relevant patient-centered outcome. Not Just Nausea And Vomiting: Cancer Docs Now Worry About Financial Toxicity It s Not An Even Playing Field: How Financial Instability Takes A Toll On Cancer Patients 6

7 The National Health Council Value Framework Get-Ready Checklist for Patient Organizations 50 Health Issues that Count as a Pre-existing Condition, TIME/Money, May 04, Suggested Books The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee The Immortal Life of Henerietta Lacks, by Rebecca Skloot o Article: Your Cells. Their Research. Your Permission?, by Rebecca Skloot The Developing Genome: An Introduction to Behavioral Epigenetics, by David S. Moore Blind Spot: The Hidden Biases of Good People, by Mahzarin R. Banaji & Anthony G. Greenwald 7