Background: Without stakeholder involvement, research projects may be undermined by poorly contextualized research questions, poor study design, limited enrollment, and ineffective dissemination to communities.
Proposed Solution to the Problem: The PRIDEnet Patient-Powered Research Network (PPRN) proposes to design, develop, and deploy an open-source software package as a platform to increase stakeholder involvement in all research phases. This platform will allow researchers to meet stakeholders in their environments and provide an easy-to-use method to provide meaningful, actionable input into PCOR and comparative effectiveness research (CER) studies. The platform will “close the loop” by communicating back to stakeholders regarding how their input was implemented. Previous solutions only permitted stakeholders to provide feedback to companies and were high-burden, requiring significant time commitments.
- Convene stakeholder group to develop and refine the functioning and design of the platform for researchers to easily crowdsource ideas from stakeholders
- Develop and test the platform with specific attention to human-focused design
- Deploy platform on public website and market/disseminate it widely to researchers, patient groups, etc.
Activities: The project will:
- Convene a diverse Stakeholder Advisory Committee (SAC) to conduct design research as well as information and interaction design activities (with a consultant) to develop a visually compelling, functional platform
- Create the website and open-source software package as a platform based on these specifications
- Deploy the platform at MyHealtheVoice.org and MyHealtheVoice.com
- Disseminate cocreated marketing materials broadly to facilitate uptake and use of the platform
- Gather feedback from stakeholders and researchers, and analyze research projects that have used the platform to study the platform’s impact
Outcomes: This project will create a website as well as an open-source software package for deployment on research organization websites. The project will result in increased meaningful, diverse stakeholder involvement in PCOR and CER studies.
Patient and Stakeholder Engagement: Stakeholders include participants, patients, clinicians, caregivers, community members, and members of advocacy/professional organizations. Stakeholders in this project are in the SAC, including leadership roles. SAC members will cocreate, test, and refine the platform. SAC members will cocreate platform marketing/dissemination materials to promote platform through stakeholders, research organizations, etc.
Project Collaborators: PCORnet ADVANCE Clinical Research Network (CRN), Health Disparities Collaborative Research Group, PCORnet STAR CRN, Community and Patient Partnered Research Network (CPPRN), Texas Health Institute/TransFORWARD, and Ibis Reproductive Health will help recruit stakeholders to cocreate this platform.