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Concept Libraries for Repeatable and Reusable Research: Qualitative Study Exploring the Needs of Users.

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A concept library for health science phenotypes is valued by users for repeatable research. However, stakeholder requirements, barriers, and concerns must be addressed for successful development and adoption.

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Area of Science:

  • Health Data Science
  • Biomedical Informatics
  • Clinical Research Informatics

Background:

  • Big data research in health sciences faces challenges due to inconsistent definitions of medical conditions and medications.
  • Lack of standardized phenotype definitions hinders comparability and reproducibility of health research studies.

Purpose of the Study:

  • To investigate the requirements of diverse stakeholders for developing a phenotype concept library data portal.
  • To understand the needs of researchers, clinicians, machine learning experts, and managers in health data science.

Main Methods:

  • Qualitative study employing one-to-one interviews with 6 health data science professionals.
  • Focus group discussion with 14 researchers using the Secured Anonymized Information Linkage (SAIL) databank.
  • Thematic analysis of transcribed interviews and focus group discussions, including a SWOT analysis of the phenotyping system.

Main Results:

  • Participants recognized the potential utility of a concept library for reproducible research but highlighted numerous development requirements.
  • Existing concept libraries were generally perceived negatively; facilitators and barriers to sharing and reusing work were identified.
  • Suggestions were made for improving reproducible research using routine health data.

Conclusions:

  • A concept library for phenotypes is highly valued by most stakeholders.
  • Barriers to sharing definitions on a public platform and differing stakeholder needs present challenges for concept library development.
  • Addressing diverse requirements, facilitators, and barriers is crucial for the successful implementation of a phenotype concept library.