Defining and Scoping Participatory Health Informatics: An eDelphi Study

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.