Abstract
BackgroundThe ubiquity of health wearables and the consequent production of patient-generated health data (PGHD) are rapidly escalating. However, the utilization of PGHD in routine clinical practices is still low because of data quality issues. There is no agreed approach to PGHD quality assurance; therefore, realizing the promise of PGHD requires in-depth discussion among diverse stakeholders to identify the data quality assurance challenges they face and understand their needs for PGHD quality assurance.ObjectiveThis paper reports findings from a workshop aimed to explore stakeholders’ data quality challenges, identify their needs and expectations, and offer practical solutions.MethodsA qualitative multi-stakeholder workshop was conducted as a half-day event on the campus of an Australian University located in a major health care precinct, namely the Melbourne Parkville Precinct. The 18 participants had experience of PGHD use in clinical care, including people who identified as health care consumers, clinical care providers, wearables suppliers, and health information specialists. Data collection was done by facilitators capturing written notes of the proceedings as 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 analyzed thematically, using deductive and inductive coding.ResultsThe participants’ discussions revealed a range of technical, behavioral, operational, and organizational challenges surrounding PGHD, from the time when data are collected by patients to the time data are used by health care providers for clinical decision making. PGHD stakeholders found consensus on training and engagement needs, continuous collaboration among stakeholders, and development of technical and policy standards to assure PGHD quality.ConclusionsAssuring PGHD quality is a complex process that requires the contribution of all PGHD stakeholders. The variety and depth of inputs in our workshop highlighted the importance of co-designing guidance for PGHD quality guidance.
Highlights
Section 1: Welcome & Introduction Section 2: Presentation Section 3: Networking & Break Section 4: Group Discussion 1 Section 5: Networking and Break Section 6: Group Discussion 2 Section 7: Conclusion
Data are collected outside the clinical setting
Why Should We Care about Data Quality?
Summary
Patients, not clinicians, are primarily responsible for capturing or recording these data
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