On 27 and 28 November, the European Institute for Innovation through Health Data (i~HD) held a conference entitled ‘Joining the Dots: ensuring better data for person-centred health and care, optimised research and Learning Health Systems’. The meeting was held in Brussels, Belgium, and was attended by stakeholders from academia, industry, regulatory bodies, EU Institutions and patient organisations. The conference aimed to facilitate the exchange of use cases, methods, successes and challenges in 6 key areas: 1) quality and interoperability of high-value health datasets; 2) patient empowerment in access and use of health data; 3) promoting and sustaining federated health data ecosystems; 4) advancing solutions for multimorbidity; 5) legal and ethical challenges of health data; and 6) boosting digital transformation.
Dipak Kalra, President of i~HD, kicked off the conference by facilitating an opening session with presentations from six EU projects: C3-Cloud, Trillium II, Digital Health Europe, eHealth Action, EHR2EDC and EHDEN. All of these projects are built around eHealth and electronic health record (EHR) use, either in the context of standard healthcare or (in the case of EHR2EDC) clinical trials. Another commonality between these projects is the involvement of academic, industry and regulatory stakeholders. Following this opening session, conference attendees participated in parallel morning and afternoon sessions focused on the six key topics identified above. All parallel sessions were designed to be interactive, with participants providing input and feedback on the specific topics. This input was then collated into a list of recommendations during an evening plenary review. Prof. Kalra presented the list of recommendations and calls to action to the eHealth Network meeting that was being held at a different location in Brussels.
The first two parallel sessions delved into the capture, interoperability and quality of high-value datasets, and the education and empowerment about access and use of health data. The second two parallel sessions discussed federated data networks and the societal challenges of multimorbidity, while the third parallel sessions focused on the legal and ethical challenges of digital health, and how to boost digital transformation of health and care. The second day finished with spotlight sessions on the C3-Cloud project, which is focused on EHRs in multimorbidity.
Key messages from these sessions included a call for patient-centric approaches to multimorbidity, with particular relevance to older people living with chronic conditions. In addition, several stakeholders highlighted the need for improved evidence-based guidelines built around patient-relevant outcomes, identified through meaningful engagement with patients and their caregivers. Attendees also discussed issues around building trust in health data; citizens and patients should be able to trust their healthcare professionals and treating institutions to collect, use and share their health data in a secure and transparent way. Legal instruments such as the GDPR were identified as an enabler of trust in health data use and sharing, although several stakeholders highlighted issues due to misapprehensions around the GDPR. One of the final recommendations was to engage directly with citizens and patients to improve health and digital literacy: this should be done from a young age, to ‘future-proof’ digital health.
Link to conference: https://www.i-hd.eu/index.cfm/events/joining-the-dots-conference-27-28-november-brussels/
