Resources & References
Patient Advisory Boards (PABs) are a valuable way of implementing patient insights into the drug development and clinical study processes. The constitution of your PAB should reflect your study population in general. Below are several links to whitepapers or resource materials for a PAB
- CISCRP whitepaper on planning and implementing Patient Advisory Boards: https://www.ciscrp.org/wp-content/uploads/2019/06/Insights-and-Best-Practices-for-Planning-and-Implementing-Patient-Advisory-Boards.pdf
- Patient-Centered Primary Care Collaborative on starting/sustaining PABs: https://www.pcpcc.org/resource/starting-and-sustaining-patient-advisory-board
- FDA Patient Engagement Advisory Committee Meeting Materials: https://www.fda.gov/advisory-committees/committees-and-meeting-materials/patient-engagement-advisory-committee
- FasterCures Patient Engagement resource tools: http://train.fastercures.org/issues/patient-engagement/
- The American Medical Association offers its reasoning for engaging patients here: https://www.ama-assn.org/practice-management/payment-delivery-models/what-patient-advisors-do-and-why-your-practice-needs
- The Clinical Trials Transformation Initiative (CTTI) Patient-Focused Drug Development recommendations: https://www.ctti-clinicaltrials.org/files/pgct-executive-summary-2015-09-01.pdf
- Patient-Centered Outcomes Research Institute (PCORI) has a searchable list on patient engagement publications: https://www.pcori.org/literature/engagement-literature
Places to Look for Patients:
For a patient to be successful contributing to the development of therapeutics, it may be helpful to provide some background knowledge of the development life cycle. Providing patients with a pre-read to acquire a basic understanding of the drug development process may help the patients acclimate.
- FDA.gov Drug Development Process (a good, high-level overview of the development process and regulatory approval, in simplistic terms): https://www.fda.gov/ForPatients/Approvals/Drugs/default.htm
- Drug Development PDF with more details, graphics/illustrations: http://phrma-docs.phrma.org/sites/default/files/pdf/rd_brochure_022307.pdf
- Patient Advisor Role (Henry Ford Health Care) video: https://www.youtube.com/watch?v=vWxWcMhvsyk
- Being a Patient Advisor guide: https://www.pcpcc.org/sites/default/files/resources/Patient%20and%20Family%20Advisor%20Guide.pdf
Templates to help support engagement discussions with patients and provide feedback to the study teams and patients/Patient Advisory Boards (PAB).