Patient-Reported Outcomes, Community Engagement, and Language Core: Overview

Patient-Reported Outcomes, Community Engagement, and Language Core
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Patient-Reported Outcomes, Community Engagement, and Language Core: Overview

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Background

The Patient-Reported Outcomes, Community Engagement, and Language (PRO-CEL) Core enhances the objectives of the Center’s research programs by supporting the array of MSK investigators who wish to capture self-reported information from culturally diverse patients, caregivers, clinical staff, and community members. The faculty of the PRO-CEL Core are nationally recognized social and behavioral scientists and community engagement experts who provide technical assistance to all users throughout multiple stages of research, including grant and protocol development, research study assistant and support staff training, and result dissemination.

Services

Research consultation support and training in the selection and/or design of specific patient-reported outcomes (PRO) survey tools, as well as measures to collect data from other key stakeholders (e.g., caregivers, physicians, nurses, community members at high risk of cancer) 

  • PRO-CEL selects measures to address the specific research questions under investigation with respect to disease type and cultural/linguistic background of the target population. PROs are then categorized based upon established psychometric guidelines (e.g., FDA PRO Guidance, 2009) and best practices (e.g., FDA Core Patient-Reported Outcomes in Cancer Clinical Trials Draft Guidance, 2021)
  • Bimonthly didactic training in the effective collection of PROs for MSK investigators and research support staff

Assisting investigators in the design and implementation of all aspects of qualitative research

  • Conceptualization of study designs and mixed methods integration for peer-reviewed funding applications and study protocols, design of data collection strategies, multi-language observational coding and ethnographic research methods, content and thematic data analyses, and writing summary reports for peer-reviewed manuscripts
  • Biweekly qualitative methods training workshop for MSK investigators

Supporting MSK investigators who wish to incorporate PRO, qualitative, and/or community engagement research methods into peer-reviewed funding applications

  • Critical feedback provided by PRO-CEL Core Members using NIH review template to help improve clarity, rigor, reproducibility and overall quality of quantitative/qualitative research design and theoretical framework for grant funding applications

Providing methodological support for clinical trial, behavioral, and population-based research that seeks to engage community or minority populations

  • Translation and/or transcreation of study materials into participants’ languages for patient and community members from diverse cultures or with limited English proficiency (LEP)
  • Rewriting English language PROs so that they are more widely understood and used by minority populations
  • Interpretation services for informed consent and study visits
  • Community engagement (including engagement of key gatekeepers and opinion leaders, consultation regarding design of community advisory boards (CAB), and survey development)
  • Use of community-based participatory research methods
  • Identification and resolution of barriers to research participation by underrepresented patients and community members
  • Assessment/data analytic methods designed in concert with the community