FasterCures created the Research Partnership Maturity Model (RPMM) toolkit to enable patient organizations that support or conduct research to 1) understand their assets and capabilities as research partners and 2) improve their ability to advance research.

Access the Model Visualization and Companion Guide

The RPMM consists of the model visualization (pictured above) and a supporting companion guide which provides:  

• A detailed description of the dimensions and elements of the RPMM

• Considerations for how the model might be used by patient organizations and their partners

• Examples of how the model mirrors real-world growth at research-focused patient organizations

Complete the following form to get free access to:

1. Research Partnership Maturity Model Visualization

2. The RPMM Companion Guide

3. An editable version of the RPMM visualization (please note that Adobe Acrobat Pro software is needed to edit this document)
    

Complete the Form

Tools You Can Use

This collection of tools provides resources aligned to the RPMM domains, and examples that can support the growth of patient organizations hoping to build their capacity in areas mentioned in the model. In the cross-cutting section below, there are toolkits containing resources applicable to multiple RPMM domains. Exploring them can help you identify resources that are relevant to the domain area you are hoping to strengthen. If you would like to suggest additional resources to include in the listings, please contact [email protected]. 

Cross-Cutting Resources

• “Measuring and Improving Impact: A Toolkit for Nonprofit Funders of Medical Research,” FasterCures

• TRAIN Toolkits, FasterCures

• Toolkit for Patient-Focused Therapy Development, National Center for Advancing Translational Sciences (NCATS)

• Resource Hub Toolkit, Global Genes

• WikiAdvocacy, Genetic Alliance

• Issues Section, Health Research Alliance (HRA)

Expertise Domain Resources

• Giving Smarter Guides, Milken Institute Center for Strategic Philanthropy 

• “Recommendations of the Global Multiple System Atrophy Research Roadmap Meeting,” Neurology, 2018

For additional Expertise domain-related resources, review the NORD and Genetic Alliance Toolkits in the cross-cutting section

Patient Domain Resources

• CDER Patient-Focused Drug Development, FDA

• Patient-Focused Drug Development Meetings: Smart Practices from Community Leaders, FasterCures

• “Key Considerations for Developing and Integrating Patient Perspectives in Drug Development,” BIO & PPMD, 2016

• The PCORI Engagement Rubric: Promising Practices for Engaging in Research, Annals of Family Medicine, 2017

• Patient Group Engagement, Clinical Trials Transformation Initiative

• Patient Engagement Management Suite, Patient-Focused Medicines Development

• Rare Diseases Registry Program, NCATS

• “Expanding the Science of Patient Input: Building Smarter Registries,” FasterCures, 2016

• “Collecting and Sharing Patient Data: Guiding Principles and Sustainability,” FasterCures, 2021

• Data DIY, Global Genes

• Patient Engagement, National Health Council

For additional Patients domain-related resources, review the NCATS, NORD, Global Genes toolkits in the cross-cutting section

Money Domain Resources

• “Venture Philanthropy Resources for LeadersLink,” FasterCures

• “Nonprofits: A Growing Force in Drug Development,” Milken Institute Center for Strategic Philanthropy

• “Nonprofit Funding Models,” HRA

• “About Translation,” NCATS

For additional Money domain-related resources, review the FasterCures TRAIN, NCATS, NORD, Global Genes, and Genetic Alliance toolkits in the cross-cutting section

Relationship Domain Resources

• “Partnering with Patients on Value, Coverage and Reimbursement,” FasterCures

• “Learn About FDA Patient Engagement,” FDA

• “An Essential Partnership: A guide for charities working with industry,” AMRC, 2014

• “Point of View: Open science takes on Parkinson’s disease,” eLife, 2021

For additional relationships domain-related resources, review the FasterCures TRAIN, NCATS, NORD, Global Genes, and HRA toolkits in the cross-cutting section

Foundation Domain Resources

• Kraft Precision Medicine Accelerator, Harvard Business School

For additional Foundation domain-related resources, review the NCATS, NORD, Global Genes, Genetic Alliance, and HRA toolkits in the cross-cutting section