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

Thomas M. Atkinson, Lisa Diamond and Andrew Vickers (Core Heads)

Email(s)

procelcore@mskcc.org

Mission

To support MSK investigators who wish to implement patient- or other self-reported outcomes into clinical research or routine care via traditional survey or interview techniques, as well as those who seek to engage socioeconomically, linguistically, and culturally diverse patients and community members.

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Background

The Patient-Reported Outcomes, Community-Engagement and Language (PRO-CEL) Core comprises a merging of two previously functioning cores, the Behavioral Research Methods (BRM) Core and the Web Survey Core, with an expansion of activities to encompass support of research studies involving multicultural populations. This reorganization has permitted expansion of the array of patient and community engagement services to the growing numbers of MSK investigators who require community-engagement, as well as cultural and linguistic adaptation when using survey and/or qualitative interview methodologies across diverse populations. The depth and breadth of scientific expertise of this unified PRO-CEL Core promotes MSK interdisciplinary collaboration.

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Services

Selection, analysis, and interpretation of psychometrically sound patient-reported outcomes (PRO) or other self-report instruments for the capture of health-related quality of life (HRQoL), health behavior change, symptom control, treatment-related adverse events (AEs), and quality of care

  • Methodological support to select or develop self-report survey tools to collect data from patients and other key stakeholders (e.g., caregivers, physicians, nurses, community members at high risk of cancer) based on the current state of measurement science
  • Bimonthly training workshops for MSK research support staff in techniques for the effective collection of patient-reported outcomes (TECPRO)

Qualitative interview, focus group, and other observational research methodology for generating new testable hypotheses, developing novel assessment tools, and establishing cultural and linguistic equivalency of PRO measures

  • Pre-testing, comprehension, language equivalency, and alternative wording for survey instruments using concept elicitation and cognitive interviewing
  • NIH-application and MSK-protocol formatted templates for qualitative data collection, interview/focus group guides, coding, and content/thematic data analysis

Pre-review and feedback of peer-reviewed funding applications consistent with “best practices” in psychosocial, behavioral, and community-engaged oncology research, including culturally and linguistically responsive research

  • 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

Creation of online surveys for data capture

  • Development of elaborate, complex survey administration platforms, including integrated skip patterns, interactive questions, sophisticated scoring, and surer-feedback of data based on advanced algorithms
  • Support for the migration of PRO surveys into web-based data capture methods (e.g., Research Electronic Data Capture [REDCap] or Qualtrics)

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

  • Transcreation of study materials into participants’ languages
  • Interpretation services for informed consent and study visits
  • Community-engagement (including the engagement of key gatekeepers and opinion leaders, consultation regarding the design of community advisory boards and other mechanisms for community representation in research studies, and community-engaged survey development)
  • Use of community-based participatory research methods
  • Identification and resolution of logistic and structural barriers to research participation by minority patients and community members
  • Assessment/data analytic methods designed in concert with the community
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