PPA Remediated

PATIENTS Professors Academy (PPA)

2025

Resource Guide

Table of Contents PATIENTS Professors Academy 2025

Week 1: Health Equity and Disability Justice

Week 2: The PATIENTS 10-Step Framework for Continuous Patient and Community Engagement

Week 3: “Planning” -Engaging Credible Messengers and Communities to Develop Research Partnerships, Steps 1-3 of the 10-Step Framework

Week 4: “Doing”- Co-developing Research with Community/Patient Partners and Authentically Engaging Partners in Community Advisory Boards, Steps 4-7 of the 10-Step Framework Week 5: “Delivering”- Following through on Commitments, Dissemination, and Continuous Engagement, Steps 8-10 of the 10-Step Framework

Miscellaneous Resources (shared during the Roundtable Series) FDA Programs and Initiatives Patient Advocacy Plain Language/ Shifting Language Other Terms and Tools

PATIENTS Professors Academy Glossary

PATIENTS Professors Academy 2025

Note

PATIENTS Professors Academy 2025

This resource guide was created using links from internal and external sources. If you identify a link that is no longer active, please contact us at PATIENTS@rx.umaryland.edu.

The University of Maryland, Baltimore Data Services Librarians have created the Archived Government Data guide to help researchers find archived, rescued, and alternative sources of federal data. This page also includes tips for archiving data yourself, as well as a mechanism for recommending specific data for preservation.

Modified April 2025 PATIENTS Professors Academy 2025

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.

Negative Patient Descriptors: Documenting Racial Bias In The Electronic Health Record Steps Towards Engagement Integrity: Learning from Participatory Visual Methods in South African Communities

White patients’ physical responses to healthcare treatments are influenced by provider race and gender RICH 2.0

“REACHing” for Equity — Moving from Regressive toward Progressive ValueBased Payment

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

High-quality care is equitable care Advancing Health Equity in Chronic Disease

Health Equity-APHA

TRAINING AND VIDEOS This group of resources feature self-paced training, videos, documentaries, and recorded trainings.

Project SHARE Curriculum Health Equity Guiding Principles of the National Health Council

Region 2 Public Health Training Center Leadership Education in Neurodevelopmental Disabilities and Related Disorders What is Health Equity?

A History of Ethics in Medical Research

Week One: Health Equity and Disability Justice DISABILITY JUSTICE IN HEALTH Healthcare experiences and perceptions among people with and without disabilities

de Vries McClintock, Barg, Katz, BA, Stineman, Krueger, Colletti, Boellstorff, and Bogner

Supporting Patient Autonomy: The Importance of Clinician-Patient Relationships

Entwistle, Carter, Cribb, and McCaffery

Doctors with Disabilities Push for Culture Change in Medicine

Gordon, NPR

Resources to improve access to healthcare for people with disabilities

Centers for Medicare and Medicaid Services

Persons with disabilities as an unrecognized health disparity population

Krahn, Walker, Correa-de-Araujo

Person-first language: are we practicing what we preach?

Crocker and Smith

Blind Parents: The Fight for Rights Isn’t Over (Podcast)

National Federation of the Blind

Courtesy Rules of Blindness

National Federation of the Blind

People of color have been missing in the disability rights movement – looking through history may help explain why

Erkulwater on The Conversation, 2022 Recommended by Elita Hill, Class of '22

Blind but Intelligent

Snider, National Federation of the Blind

Racial bias affects media coverage of missing people. A new tool illustrates how

NPR

Mohamed Kamara Launched A Company To Improve The Maternal Health Sector After Losing His Sister And Aunt Due To Childbirth Complications

AfroTech

Week Two: The PATIENTS 10-Step Framework for Continuous Patient and Community Engagement PATIENT-CENTERED OUTCOMES RESEARCH RESEARCH ARTICLES AND BLOGS This group of resources features scholarly research articles, opinion pieces, and blog posts. Sources are from the original authors, academic institutions, and researchers.

Patients’ views can improve clinical trials for participants.

What’s Important: Patient Engagement in Research

Patient-Centeredness in the Design of Clinical Trials

Opening More Doors Patients’ views can improve clinical trials for participants

Patients’ early engagement in research proposal development (PEER-PD): Patients guiding the proposal writing

TRAINING AND VIDEOS This group of resources features videos explaining in great detail the definitions of patientreported outcomes, patient engagement, and patient-centered outcomes.

Week Two: The PATIENTS 10-Step Framework for Continuous Patient and Community Engagement

RESOURCE

DESCRIPTION

SOURCE

Comparative Effectiveness Research Explaining Comparative Effectiveness Research

Discusses what this type of research does

Patient-Centered Outcomes Research Institute

Comparative Effectiveness Research

Discusses the current state of Comparative Effectiveness Research and examples of it

Altarum Healthcare Value Hub

Defining Comparative Effectiveness Research The Importance of Getting It Right

“The Institute of Medicine committee approached the task of defining CER by identifying the common theme in the 6 extant definitions.”

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

Mullins, Abdulhalim, and Lavallee

What works when: Mapping patient and stakeholder engagement methods along the ten-step continuum framework

Edwards, Huang, Jansky, and Mullins

Site engagement for multi-site clinical trials

Goodlett, Hung, Feriozzi, Lu, Bekelman, Mullins

Pragmatic patient engagement in designing pragmatic oncology clinical trials

Davies-Teye, Medeiros, Chauhan, Baquet, Mullins

Week Three: “Planning” Engaging Credible Messengers and Communities to Develop Research Partnerships, Steps 1-3 of the 10-Step Framework

RESEARCH ARTICLES AND BLOGS This group of resources features scholarly research articles, opinion pieces, and blog posts. Sources are from the original authors and researchers.

Six ways to foster communityengaged research during times of societal crisis

Advancing community-engaged research: Increasing trustworthiness within community-academic partnerships

Access, Low Patient Trust Compounded for Poor COVID Vaccine Equity How Healthcare Is Starting to Heal Damaged Black Patient Trust

Defining and measuring community engagement and communityengaged research Access, Low Patient Trust Compounded for Poor COVID Vaccine Equity

DATABASES AND RESOURCE HUBS These resources feature resource hubs and databases for patients and researchers.

Principle of Community Engagement- 2nd Edition Community Based Participatory Research (CBPR) Guidebook

Week Three: “Planning” Engaging Credible Messengers and Communities to Develop Research Partnerships, Steps 1-3 of the 10-Step Framework Patient Engagement Studio

Patient Compensation and Fair Market Value (FMV) Calculator

Determining Fair Market Value: Demystifying the methodology behind patient remuneration

TRAINING AND VIDEO This course introduces students to the core principles of health equity research. Covers topics such as defining health equity, engaging community and policy stakeholders, patient-centeredness, cultural competence, and dissemination of research findings. Content will recognize different geographic, cultural, and social contexts where health inequities occur.

Dr. Mattingly will examine issues related to evaluating engagement.

Week Three: “Planning” 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.

A toolkit for patients and the public to evaluate patient engagement

Johns Hopkins HOPE brings volunteers, patients, and researchers together as partners in clinical research to deliver the promise of medicine.

The online community for conversations about Black health.

Week Four: “Doing”

Co-developing Research with Community/Patient Partners and Authentically Engaging Partners in Community Advisory Boards, Steps 47 of the 10-Step Framework DATABASES AND RESOURCE HUBS These resources feature resource hubs and databases for patients and researchers.

Engagement Resources from the Patient-Centered Outcomes Research Institute (PCORI)

The Value of Engagement from The Patient-Centered Outcomes Research Institute (PCORI)

Stakeholder Engagement

Clinical and Rural Health Research Department at St. Lawrence Health System

TRAINING AND VIDEOS This group of resources features self-paced training, videos, documentaries, and recorded training.

How to build a Stakeholder Group Structure

Engaging Stakeholders 5-step Approach to Patient Engagement

Week Four: “Doing” Co-developing Research with Community/Patient Partners and Authentically Engaging Partners in Community Advisory Boards, Steps 4-7 of the 10-Step Framework

RESOURCE

DESCRIPTION

SOURCE

Videos Introduction to and Examples of PatientCentered Outcomes Research (PCORI)

Part 1 of St. Lawrence Health System's Learning Together, Leading Together series

Carly Lovelett, St. Lawrence Health System

Exploring Research Methodology and Engagement Principles

Part 2 of St. Lawrence Health System's Learning Together, Leading Together series

Carly Lovelett, St. Lawrence Health System

Part 3 of St. Lawrence Health System's Learning Together, Leading Together series

Carly Lovelett, St. Lawrence Health System

Explaining One Concept in 5 Levels of Difficulty

An example of how to explain complicated ideas to different audiences

Daphna Shohamy for Wired

Introduction to "Best Practices for Engaging Community Stakeholders in Health Equity Research”

Introduces students to the core principles of health equity research

Lisa A. Cooper, MD, Johns Hopkins University

Community Advisory Boards (CABs)

Discusses how to employ Community Advisory Boards towards health equity

Key Considerations for Planning, Conducting, and Disseminating Engaged Research and the Importance of PCOR and Community Involvement

Lisa A. Cooper, MD, Johns Hopkins University

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.

Implementation Science & Practice

Active Implementation Hub

Competencies for Implementation Facilitators

The Collaborative for Implementation Practice

Eight Expert Conversations on Building Equity into Implementation

Week Five “Delivering” 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

Miscellaneous Resources RESOURCE

DESCRIPTION

SOURCE

FDA Related Services and Initiatives

21st Century Cures Act

The 21st Century Cures Act (Cures Act) is designed to help accelerate medical product development and bring new innovations and advances to patients who need them faster and more efficiently.

Shared during our FDA Roundtable

RegenMedEd Webinar: The Critical Role of Patients in Advancing Gene Therapy Treatments for Rare Diseases

The webinar brought together patients, caregivers, advocates, and other important stakeholders to celebrate and Shared during our recognize the contributions that FDA Roundtable patients with rare diseases have made to advancements in regenerative medicine.

Regenerative Medicine 101 Webinar: Information for Patients, Caregivers & Advocates

The webinar brought together important stakeholders to discuss how the FDA is working to advance regenerative medicine and its role in ensuring regenerative medicine treatments are safe and effective for patients.

Annual Patient Engagement & Regenerative Medicine Meeting 2022: An FDA CBER Workshop for Patient Advocates

FDA staff and panelists discussed how natural history studies contribute to Shared during our improved understanding of diseases and FDA Roundtable drug development, including regenerative medicine treatments such as gene and cell therapies.

Condition-Specific Meeting Reports and Other Information Related to Patients' Experience

This webpage provides links to certain publicly available external reports and resources relating to patient experience data.

Shared during our FDA Roundtable

Shared during our FDA Roundtable

Miscellaneous Resources

RESOURCE

DESCRIPTION

Request a Meeting with the Center for Drug Evaluation and Research (CDER)

Proposed ICH Guideline Work to Advance Patient Focused Drug Development

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 Assessing the sponsors are increasingly considering Financial Value of engaging with patients in the design Patient Engagement: A Quantitative and conduct of clinical development Approach from CTTI's programs, sponsors are often reluctant Patient Groups and to go beyond pilot programs because of Clinical Trials Project uncertainty in the return on investment.

Digital Health Technologies for Remote Data Acquisition in Clinical Investigations

ACT Coach

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.

Engaging patients and stakeholders to identify a research agenda to support social determinants of health (SDOH) screening and intervention initiatives in community pharmacy

SOURCE Shared during our FDA Roundtable

Shared during our FDA Roundtable

Shared during our FDA Roundtable

Shared during our FDA Roundtable

Veterans Affairs

Parikh, et. al

Miscellaneous Resources

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 Care Fact sheet on creating Patient and Family Advisory Councils

Quick Guide PDF available for screen readers.

Miscellaneous Resources

Federally Qualified Health Centers (FQHCs) FQHCs are federally funded nonprofit health centers or clinics that serve medically underserved areas and populations. Federally qualified health centers provide primary care services regardless of your ability to pay. Services are provided on a sliding scale fee based on your ability to pay Federally Qualified Health Centers (FQHCs) and the Health Center Program Overview - Rural Health Information Hub .

Health Insurance Health Insurance explained from the Centers for Medicare and Medicaid.

PDF available ready for screen readers.

Clinical Trials Clinical Trials explained with a helpful graphic of the steps in clinical trials.

Contract Research Organizations A comprehensive guide to Contract Research Organizations What is a Contract Research Organization

Understanding the US Healthcare system ISPOR - US Healthcare System Overview-Background

OTHER

These 197 Terms May Trigger Review Of your Grant Proposal

Article on potential language changes for funding

Forbes Magazine

Some Linguistics suggestions for continuing the work

Article on potential language changes

This Week in Public Health

PATIENTS Professors Academy Glossary of Terms AHRQ: Agency for Healthcare Research and Quality 10-Step Framework: Dr. Mullins 10-Step Process for Continuous Patient Engagement towards Patient-Centered Outcomes Research: “Continuous Patient Engagement in Comparative Effectiveness Research.”

Basecamp: The learning system for the PPA. All content will flow from Blackboard CBPR: Community-Based Participatory Research CEnR: Community-Engaged Research CER: Comparative Effectiveness Research CHW: Community Health Worker Clinical Research Glossary from the MCRT Center of Brigham and Women’s Hospital and Harvard CTSA: Clinical and Translational Science Awards DEIJ/EDI: Diversity, Equity, Inclusion, and Justice/Equity, Diversity, Inclusion EHR: Electronic Health Record FDA: U.S. Food and Drug Administration HEOR: Health Economics and Outcomes Research (HEOR) HIPAA: Health Insurance Portability and Accountability Act HS/HSL: Health Sciences and Human Services Library at the University of Maryland Baltimore IRB: Institutional Review Board

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 O2: Oxygen 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)

Modified April 2025 PATIENTS Professors Academy 2025

PATIENTS Professors Academy (PPA)

2025

Resource Guide