Building Capacity to Engage in Patient-Centered CER on Fungal Diseases

MyCARE Foundation has received a $300,000 funding award through the Eugene Washington PCORI Engagement Award Program to strengthen the ability of patients, caregivers, clinicians, researchers, and stakeholder organizations to participate as meaningful research partners in fungal disease research.

The project, Building Capacity to Engage in Patient-Centered CER on Fungal Diseases, is supported under PCORI Engagement Award EACB-49088 and will be conducted from July 1, 2026, through June 30, 2028.

People affected by fungal diseases often have limited opportunities to help determine which research questions are asked, which outcomes are measured, and how findings are communicated to patients and families.

This project will establish a durable, national, patient-driven engagement infrastructure for fungal disease research. Patients, caregivers, clinicians, researchers, and stakeholder partners will participate as meaningful research partners to help shape, conduct, and sustain future patient-centered comparative clinical effectiveness research, commonly called patient-centered CER.

Patient-centered CER compares two or more healthcare options, such as treatments, diagnostic approaches, services, or care strategies, to help patients, caregivers, and clinicians make better-informed healthcare decisions.

Patient-centered research starts with the questions and outcomes that matter to people living with fungal diseases.

Engage

Patients and caregivers as partners and co-designers.

Learn

Build practical skills for patient-centered CER.

Improve

Identify priorities and outcomes that matter most.

Partnership Approach

Partners will advise on curriculum design, researcher training, evaluation, technology, dissemination, recruitment, and connections to academic and clinical networks. MyCARE Foundation retains responsibility for overall project leadership, coordination, and final deliverables.

Carolynn Thomas Jones, DNP, MSPH, CRN-BC, FAAN

University of Alabama at Birmingham

Co-Principal Investigator; helps lead curriculum development, researcher training, and integration of project materials through UAB’s Clinical Research Management programs.

Andrej Spec, MD, MSCI

Washington University School of Medicine

Contributes expertise in fungal diseases, clinical research, training design, and project evaluation.

Ruth Kleinpell, PhD

Vanderbilt University

Serves as the project’s evaluation lead, helping assess participation, readiness, inclusion, engagement quality, and early impact.

Tom Davis

Information Technology Consultant

Supports the online learning, resource, and participant-management infrastructure.

A Representative National Engagement Network

Build relationships with patients, caregivers, clinical centers, professional societies, researchers, stakeholder organizations, and community partners across the United States, with intentional attention to diverse and historically underrepresented perspectives.

A Patient and Caregiver Core

A core group of patient and caregiver partners will serve as co-designers and advisors, review materials, identify priorities, test tools, participate in working groups, and guide dissemination and sustainability.

A Patient-Centered Curriculum and Toolkit

Co-develop practical training and tools on patient-centered research, outcomes that matter, partnership-building, accessibility, shared decision-making, and understandable communication.

Stronger Researcher-Community Partnerships

Create opportunities to learn together and practice partnership skills through workshops, facilitated discussions, consultations, co-design sessions, case examples, and a stakeholder convening.

Community-Informed Research Priorities

Identify research questions and priorities that reflect the decisions, outcomes, and care experiences that matter most to people affected by fungal diseases.

Public Curriculum and Resource Library

Use FightFungus.org to house public-facing modules, worksheets, recorded learning materials, engagement tools, priority-setting products, and project updates as they are developed and approved.

Diversity and Representation

Include partners and communities affected by fungal diseases, including perspectives historically excluded from research.

Early and Ongoing Engagement

Invite partners to contribute from project planning through development, testing, dissemination, and sustainability.

Dedicated Resources and Compensation

Provide compensation for designated work and support participation needs when applicable.

Capacity to Work as a Team

Offer orientation, training, accessible materials, and support so all team members can contribute effectively.

Meaningful Inclusion in Decisions

Use transparent processes so partner perspectives influence priorities, tools, activities, and products.

Ongoing Review and Improvement

Gather feedback, monitor engagement quality, and adjust approaches when needed.

What Meaningful Partnership Looks Like

• People with lived experience contribute to real project decisions.
• Roles are clear, flexible, and matched to strengths and preferences.
• Barriers to participation are identified and addressed.
• Feedback is documented, discussed, and acted on when feasible.

Building the Foundation

• Launch the national engagement infrastructure.
• Recruit and onboard patient and caregiver partners.
• Establish communication and participation processes.
• Begin co-designing the curriculum and engagement toolkit.
• Identify training, accessibility, and partnership needs.

Co-Design, Pilot Testing, and Priority Setting

• Pilot and refine training modules.
• Test engagement tools with diverse partners.
• Convene virtual learning and priority-setting sessions.
• Develop community-informed research priorities.
• Hold a broader stakeholder convening.

Dissemination and Sustainability

• Finalize the curriculum and toolkit.
• Complete patient-informed priority products.
• Release patient and researcher training resources.
• Conduct webinars and dissemination activities.
• Evaluate the network and implement a sustainability plan.

This page will serve as the public resource center for materials developed through the project. Resources will be added as they are completed, reviewed, and approved for public dissemination.

Start Here

Project overview, patient and caregiver core overview, frequently asked questions, and a plain-language introduction to patient-centered CER.

Patient and Caregiver Partner Resources

Onboarding presentation, orientation handbook, roles and responsibilities, meeting preparation, accessibility support, compensation information, and preparation for future consulting roles.

Patient-Centered CER Training

Self-paced modules, slides, worksheets, videos, and recorded webinars on research questions, methods, outcomes, team roles, priority setting, and dissemination.

Researcher and Clinician Resources

Guidance on partnering with people with lived experience, trust, power-sharing, compensation, accessibility, facilitation, and sustaining partnerships.

Engagement Toolkit

Recruitment templates, readiness forms, orientation checklists, meeting agendas, decision frameworks, feedback surveys, contribution trackers, and dissemination tools.

Fungal Disease Research Priorities

Community-informed research topics, priority-setting summaries, a final Research Priorities and Interests document, and plain-language summaries.