Patient and community partnered research is becoming more common because community members have valuable insight that can help researchers develop research questions that matter the most to the community, design studies that are easier for people to participate in, and share the results of their research outside of academic journals. The tips here are meant to help you have the best possible experience partnering with researchers.
Patients
Persons with current or past experience of illness or injury, family members or other unpaid caregivers of patients, or members of advocacy organizations that represent patients or caregivers
STAR CRN Glossary of Acronyms & Terms
The STAR Clinical Research Network has developed a glossary of research acronyms and terms to help others who may encounter these terms in the course of their research.
Recruitment and Retention Strategies for PCORnet Studies: Learnings from INSIGHT CRN
Effective recruitment and retention strategies that are adaptable to the patient population and changing macro-environment are essential to the success of clinical research studies. INSIGHT CRN’s “Recruitment and Retention Strategies for PCORnet Studies” guide offers the most effective strategies we have used to date.
Rapid and Collaborative Response to COVID-19
Researchers responded rapidly and collaboratively to answer COVID-19 questions by using PCORnet resources including a flexible coordinating center, the PCORnet® Common Data Model, research-ready networks, and existing research studies that pivoted quickly. Researchers can use this resource to demonstrate how the resources of PCORnet can be used for studies that require fast answers.
How Common are New Symptoms and Conditions After COVID-19? Results from PCORnet
Summary of the CDC’s research on symptoms experienced more than 4 weeks after first being infected with the virus that causes COVID-19. Researchers studied data from electronic health records of 1.8 million adults and 300,000 children from 42 PCORnet network partners.
NORC Data Convenings Webinar: Expanding Social Determinants of Health Data across PCORnetExpanding Social Determinants of Health Data across PCORnet
The webinar discussed opportunities for social determinants of health (SDOH) data within the PCORnet data infrastructure. Objectives included: discussing the current status of SDOH data collection by PCORnet Network Partners; opportunities to optimize accessibility and availability of individual-, population-, and community-based SDOH data to support PCORnet research; and engaging stakeholders on short- and long-term infrastructure priorities to enhance SDOH data capture for network-wide research.
Access the Social Determinants of Health Data across PCORnet resources here.
GRID Toolkit for Prioritizing Health Research Topics
This toolkit offers equity-centered and creative approaches for authentic engagement in research. This toolkit can help uncover health priorities that matter to people and patients.
Building Stakeholder Capacity to Engage around Technical Content
This webinar could be a helpful resource for researchers and organizations working to engage patients in discussions and decision-making related to complex and highly technical topics. Panelists Monique Does (Kaiser Permanente) and Liz Salmi (OpenNotes) discuss tools and strategies for engaging stakeholders in research data and methodology topics, and their own experiences with this type of engagement from a researcher and patient/researcher perspective. Greg Merritt (PaTH Network) moderates.
Digital Tools for Facilitating Patient/Partner Engagement
This townhall-style webinar can be used by researchers and organizations interested in learning more about using digital tools and strategies to engage patients and other stakeholders in research. Panelists Shilpa Venkatachalam and Dana Goodlett discuss unique tools to support patient partner engagement in research and explore the opportunities and challenges for scaling and sustaining these types of tools. Bray Patrick-Lake moderates the session.
Supporting Diverse & Inclusive Engagement
These slides can be used by researchers and organizations to inform policies and programs for increasing underrepresented population engagement in research and governance. Panelists Carolyn Shimmin, George and Fay Yee, and Freddie White-Johnson discussed creating an inclusive environment for engagement, strategies for stakeholder retention, and the importance of community-centered approaches. Lisa Stewart moderated.