On June 5th, the European Heart Network (EHN) hosted a virtual meeting on patients and public involvement in Big Data research.
Sharing health data for scientific health research can boost innovation for diagnosis and treatments of various diseases and conditions, including cardiovascular disease. Support and cooperation of patients and the public is essential to achieve this goal. The EU-funded project BigData@Heart aims to create a platform for large-scale data research in cardiovascular health.
During this webinar, Ghislaine van Thiel, Associate Professor in Julius Center for Health Sciences and Primary Care, Medical Humanities Research University Medical Center Utrecht, opened the discussion with a presentation of the BigData@Heart project and the main outcomes from a literature review on patients’ and public views and attitudes towards the sharing of health data for research. She then presented a draft survey of the BigData@Heart project aimed at increasing our knowledge in this field by gathering views of patients and the wider public.
Patients and patient representatives from EHN members present in the virtual exchange, provided their feedback on changes to be made so that the survey is relevant and easy to understand from patients and the wider public. The group also discussed the launch of the survey in early autumn and EHN members' support in spreading it as wide as possible.