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Patient health profiles automatically created from online posts accurately reflect user interests and can help connect patients for support. This highlights the potential of patient-generated health data (PGHD) in healthcare.

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Area of Science:

  • Digital Health
  • Health Informatics
  • Patient-Reported Outcomes

Background:

  • Patient-generated health data (PGHD) is valuable for patient care and health policy.
  • Limited research exists on the validity of PGHD-derived profiles from the patient's viewpoint.
  • Emerging technologies facilitate PGHD extraction and patient profiling.

Purpose of the Study:

  • To explore the validity and utility of automatically generated health interest profiles from online patient community posts.
  • To assess patient perspectives on the use and expansion of these profiles.

Main Methods:

  • Developed automated methods to extract health interest profiles from online community posts.
  • Conducted a user evaluation with community members to assess profile accuracy and user attitudes.
  • Analyzed alignment between automatically extracted profiles and manually stated interests.

Main Results:

  • Extracted profiles accurately reflected patients' stated health interests.
  • Automated profiles expanded upon manually entered interests with minimal user effort.
  • Patients expressed positive attitudes towards using profiles for peer support and connection.

Conclusions:

  • Automatically generated health interest profiles from PGHD are valid and useful from the patient's perspective.
  • PGHD in online communities offers significant opportunities for patient engagement and support.
  • Improvements in biomedical text processing are needed to fully leverage unstructured PGHD.