With the rapid development in health data science in recent years, in particular around electronic healthcare records and associated coded outcomes, there now exists a gap between technical innovation and robust clinical evidence.
In this context, the BigData@Heart Consortium organised a second stakeholder meeting, which took place on October 26th 2020 (14:00-16:30 CET) virtually, to guide future research and clinical decision support by raising awareness of current limitations and providing a framework for best practice approaches for (1) ascertaining the quality and adequacy of coding and (2) integration and harmonisation.
The first on-line stakeholder meeting on July 7th, 2020 gathered together around 50 relevant experts (i.e. regulators, journal editors, representatives from industry, payers, patients and cardiology professionals within the ESC) to discuss the coding standards and the impact on trials.
The October virtual meeting was focused on social aspects. It included some short presentations on social licence, patient perspective and regulatory decision making from thought leaders, and four break-out sessions:
Patient concerns & privacy;
Technical process & data stewardship;
Publication process & requirements;
Implementation into practice of EHR studies (regulatory to practice).
Finally, scientific experts were re-directed to the plenary session.
There will be an iterative process, so the online meetings, offline communications and drafts will all contribute to a final white paper.
For further information: https://www.escardio.org/Research/Big-Data-Heart/bigdata-heart-stakeholder-event-october-2020