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Participatory health informatics (PHI) empowers individuals in healthcare decisions using technology. This study defines PHI as a multidisciplinary field focused on individual-centered care and its societal impact.

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Area of Science:

  • Health Informatics
  • Digital Health
  • Consumer Health Informatics

Background:

  • Healthcare is evolving to include patient involvement in decision-making through mobile apps and wearables.
  • Participatory health informatics (PHI) is an emerging term for these patient-empowering activities.
  • The research scope of PHI requires a clear definition.

Purpose of the Study:

  • To propose a preliminary definition for Participatory Health Informatics (PHI).
  • To define the scope and boundaries of the PHI research field.

Main Methods:

  • An adapted Delphi study design was employed to achieve expert consensus.
  • A literature review identified initial attributes for PHI (18 characteristics, 14 aims, 4 relations).
  • Researchers, health professionals, and informaticians participated in three survey rounds to refine PHI attributes.

Main Results:

  • Consensus was reached on 16 characteristics, 9 aims, and 6 related fields for PHI.
  • The study involved 44 participants in the first round, with 28 completing all three rounds.
  • Participants represented diverse sectors (industry, academia, health) and global regions.

Conclusions:

  • PHI is defined as a multidisciplinary field utilizing information technology for individual-centered care.
  • PHI aims to support patients and improve overall societal health.
  • The defined scope aids in developing research priorities and outcome measurements for PHI.