JMIR Publications

ABSTRACT

Background:

The ubiquity of health wearables and consequently, the production of patient-generated health data [PGHD] is rapidly escalating. However, the utilisation of PGHD in routine clinical practices is still low due to data quality obstacles. As there is no agreed approach to PGHD quality assurance, realising the promise of PGHD requires in-depth discussion among diverse PGHD stakeholders to identify the challenges they face and to understand their needs for PGHD quality assurance.

Objective:

A participatory workshop aimed to explore stakeholders’ data quality challenges, identify their needs and expectations and to offer practical solutions.

Methods:

A qualitative multi-stakeholder workshop was conducted as a half-day event in the Melbourne Parkville Precinct. The 18 participants were members of the public who had experience of PGHD use in clinical care, including people who identified as healthcare consumers, clinical care providers, wearables suppliers, and health information specialists. Attendees engaged in participatory design activities in written and oral formats using a range of whole-group and small-group interactive methods. The collected data were analysed thematically, using deductive and inductive coding.

Results:

The participants’ discussions revealed a range of technical, behavioural, operational, and organisational challenges surrounding PGHD from when data are collected by patients until they are used by healthcare providers for clinical decision-making. PGHD stakeholders found consensus on sufficient training and engagement, continuous collaboration with all PGHD stakeholders, and development of technical and policy standards to assure PGHD quality.

Conclusions:

Assuring PGHD quality is a complex process which requires the contribution of PGHD stakeholders. The variety and depth of inputs in our workshop highlighted the importance of developing PGHD quality guidance.