PATIENTS Professors Academy(PPA)
Week One: Health Equity and Disability Justice
RESEARCH ARTICLES AND BLOGS
This group of resources features scholarly research articles, opinion pieces, personal testimonies, and blog posts. Sources are from the original authors, academic institutions, and researchers.
White patients’ physical responses to healthcare treatments are influenced by provider race and gender
RICH 20
“REACHing” for Equity — Moving from Regressive toward Progressive ValueBased Payment
Negative Patient Descriptors: Documenting Racial Bias In The Electronic Health Record
Steps Towards Engagement Integrity: Learning from Participatory Visual Methods in South African Communities
Cancer Statistics for African American/Black People 2025
Making the Business Case for Hiring Oncology Social Workers
SUPPORT ORGANIZATIONS
These resources are support organizations for patients experiencing different conditions and research efforts.
Week One: Health Equity and Disability Justice
DATABASES AND RESOURCE HUBS
These resources feature resource hubs and databases for patients and researchers.
Equitable Selection of Subjects
Public Health and Resource Navigator
Health Equity-APHA
Advancing Health Equity in Chronic Disease
TRAINING AND VIDEOS
High-quality care is equitable care
This group of resources feature self-paced training, videos, documentaries, and recorded trainings.
Region 2 Public Health Training Center
What is Health Equity?
Project SHARE Curriculum
Health Equity Guiding Principles of the National Health Council
Leadership Education in Neurodevelopmental Disabilities and Related Disorders
A History of Ethics in Medical Research
Week Two: The PATIENTS 10-Step Framework for Continuous Patient and Community Engagement
DESCRIPTION
Comparative Effectiveness Research
Explaining Comparative Effectiveness
Research
Comparative Effectiveness Research
Defining Comparative Effectiveness
Research The Importance of Getting It Right
Discusses what this type of research does
Discusses the current state of Comparative Effectiveness Research and examples of it
“The Institute of Medicine committee approached the task of defining CER by identifying the common theme in the 6 extant definitions.”
Patient-Centered Outcomes Research Institute
Altarum
Healthcare Value Hub
Sox, 2010
Ethical Research Practices and Recognizing Past Research Misconduct
Allegations of fabricated research undermine key Alzheimer's theory
A six-month investigation by Science magazine uncovered evidence that images in the much-cited study, published 16 years ago in the journal Nature, may have been doctored.
Membership Requirements for IRBs
How IRBs Protect Human Participants
Henrietta Lacks, Tuskegee, and Ethical Data Collection
Bendix and Chow, 2022
Recommended by Sandy Powell, Class of '22
Week Two: The PATIENTS 10-Step Framework for Continuous Patient and Community Engagement
PATIENTS 10- STEP ENGAGEMENT FRAMEWORK
Continuous Patient Engagement in Comparative Effectiveness Research
What works when: Mapping patient and stakeholder engagement methods along the ten-step continuum framework
Mullins, Abdulhalim, and Lavallee
Edwards, Huang, Jansky, and Mullins
Site engagement for multi-site clinical trials
Pragmatic patient engagement in designing pragmatic oncology clinical trials
Goodlett, Hung, Feriozzi, Lu, Bekelman, Mullins
Davies-Teye, Medeiros, Chauhan, Baquet, Mullins
Engaging Credible Messengers and Communities to Develop Research Partnerships, Steps 1-3 of the 10-Step Framework
SUPPORT ORGANIZATIONS
These resources are support organizations for patients experiencing different conditions and research efforts.
Johns Hopkins HOPE brings volunteers, patients, and researchers together as partners in clinical research to deliver the promise of medicine.
A toolkit for patients and the public to evaluate patient engagement
The online community for conversations about Black health.
Week Five “Delivering”
Following through on Commitments, Dissemination, and Continuous Engagement, Steps 8-10 of the 10Step Framework
RESEARCH ARTICLES AND BLOGS
This group of resources features scholarly research articles, opinion pieces, personal testimonies, and blog posts. Sources are from the original authors, academic institutions, and researchers.
Implementation Practice in Human Service Systems:
Understanding the Principles and Competencies of Professionals Who Support Implementation
Training in Implementation Practice Leadership (TRIPLE): evaluation of a novel practice change strategy in behavioral health organizations
Integration and Implementation Insights
DATABASES AND RESOURCE HUBS
These resources feature resource hubs and databases for patients and researchers.
Active
Implementation Hub
Competencies for Implementation Facilitators
Eight Expert Conversations on Building Equity into Implementation
Implementation Science & Practice
The Collaborative for Implementation Practice
Following through on Commitments, Dissemination, and Continuous Engagement, Steps 8-10 of the 10-Step Framework
TRAINING AND VIDEOS
This group of resources feature self-paced training, videos, documentaries, and recorded trainings.
Inspiring Change Course
Offers a virtual course on how to enact change from research
How do we make change using Dissemination & Implementation
A Practice Guide to Supporting Implementation
DESCRIPTION SOURCE RESOURCE
Request a Meeting with the Center for Drug Evaluation and Research (CDER)
Proposed ICH Guideline Work to Advance Patient Focused Drug Development
Assessing the Financial Value of Patient Engagement: A Quantitative Approach from CTTI's Patient Groups and Clinical Trials Project
Digital Health Technologies for Remote Data Acquisition in Clinical Investigations
ACT Coach
This paper identifies key areas where incorporation of the patient’s perspective could improve the quality, relevance, safety and efficiency of drug development and inform regulatory decision making.
While patient groups, regulators, and sponsors are increasingly considering engaging with patients in the design and conduct of clinical development programs, sponsors are often reluctant to go beyond pilot programs because of uncertainty in the return on investment.
This guidance provides recommendations to sponsors, investigators, and other stakeholders on the use of digital health technologies (DHTs) to acquire data remotely from participants in clinical investigations evaluating medical products.
Acceptance and Commitment Therapy (ACT) app that help people live with unpleasant thoughts and feeling without avoiding them or being controlled by them.
Shared during our FDA Roundtable
Shared during our FDA Roundtable
Shared during our FDA Roundtable
Shared during our FDA Roundtable
Veterans Affairs
Engaging patients and stakeholders to identify a research agenda to support social determinants of health (SDOH) screening and intervention initiatives in community pharmacy Parikh, et. al
USING PLAIN LANGUAGE
Health Literacy Resources
Health Literacy Resource Hub
Health Literacy for Public Health Professionals
PATIENT ADVOCACY
Patient and Family Advisory Councils: Resources for the Field | AHA—Podcast series about creating these councils and their role in promoting patient perspectives in hospital systems
BJC Healthcare Patient and Family Advisory Council Tool Kit.
Institute for Patient- and Family-Centered CareFact sheet on creating Patient and Family Advisory Councils
Quick Guide PDF available for screen readers.
PATIENTS Professors Academy Glossary of Terms
NCATS: National Center for Advancing Translational Sciences
NCI: National Cancer Institute
NIA: National Institute on Aging
NIH: National Institutes of Health
NIMHD: National Institute on Minority Health and Health Disparities
O : Oxygen 2
P & T: Pharmacy & Therapeutics Committee
PATIENTS Program: PATient-centered Involvement in Evaluating effectiveNess of TreatmentS at the University of Maryland, Baltimore
PATIENTS Professor: a graduate of the PATIENTS Professors Academy
Payer: A company that pays for a medical service
PCOR: Patient-Centered Outcomes Research
PCORI: Patient-Centered Outcomes Research Institute
PFDD: Patient-Focused Drug Development
PPA: PATIENTS Professors Academy
P-SHOR: Department of Practice, Sciences, and Health Outcomes Research (in the School of Pharmacy at the University of Maryland, Baltimore)
Pulse Oximetry: Pulse oximetry is a test used to measure the oxygen level (oxygen saturation) of the blood (Johns Hopkins Medicine)
R & D: Research & Development
RWE: Real World Evidence or data collected indirectly from patients through insurance claims data or electronic health records
PATIENTS Professors Academy Glossary of Terms
RFP: Request for Proposal
SDoH: Social Determinants of Health
Sunshine Act: "The Physician Payments Sunshine Act (PPSA) requires medical product manufacturers to disclose to the Centers for Medicare and Medicaid Services (CMS) any payments or other transfers of value made to physicians or teaching hospitals (Health Affairs)