Joining the Dots Conference

Strength lies in numbers. Let’s make a powerful impact by joining the dots between all those striving for a better use of data to optimise person-centred health and research. The tangible goal we want to achieve thanks to each attendee’s input: finalise a list of forceful calls to action for European Health Ministries to be presented by a few of us at the nearby eHealth Network meeting during our second day. We will learn of their feedback at the end of our conference.

To guide the discussion sessions, i~HD brought together leading European projects that tackled some major health data challenges. These projects participated in three of the six sessions (see challenges below). These sessions were led by European thought leaders who exchanged use cases, insights, success, and challenges. DigitalHealthEurope contributed multi-stakeholder expertise to help shape actionable policy recommendations. The final sessions on Thursday, 28th, focused on how EHR systems could be adapted to guide clinicians and patients in managing multimorbidity. They started with lunch-time demonstrations of the C3-Cloud project's clinician and patient solutions.

• C3-Cloud aimed to develop personalised care plans for complex multimorbid patients, supported by ICT tools and managed by a coordinated multidisciplinary team, that promotes integrated care and the involvement of the patient and/or caregiver.
• The Trillium II project was coordinating and supporting efforts towards an interoperable international patient summary.
• DigitalHealthEurope undertook a number of actions to boost innovation and advance the Digital Single Market priorities for the digital transformation of health and care: citizens’ secure access to and sharing of health data across borders; better data to advance research, disease prevention and personalised health and care; digital tools for citizen empowerment and person-centred care.
• The main objective eHAction wanted to address works together with a common vision at EU Level, Country and Regional level to promote and strengthen the use of ICT in health development, from applications in the field to EU governance and strategies implementation.
• The European Institute for Innovation through Health Data, in short i~HD, aims to improve healthcare and accelerate research through more trustworthy reuse of health data. It is a membership-based organisation with members from pharma, healthcare providers and academic organisations, and works closely with patient organisations, healthcare payers, the health ICT sector and standards development organisations.
• The EHR2EDC project (from Electronic Health Records to Electronic Data Capture systems) developed solutions to enable routinely collected hospital EHR data to be directly reused within the conduct of clinical trials, if trial subjects have given their consent for this.
  EHDEN (European Health Data & Evidence Network) was launched to address the current challenges in generating insights and evidence from real-world clinical data at scale, to support patients, clinicians, payers, regulators, governments, and the pharmaceutical industry in understanding well-being, disease, treatments, outcomes and new therapeutics and devices.

On Wednesday 27th, attendees could register for one morning session (challenge 1 or 2) and one afternoon session (challenge 3 or 4). And on Thursday 28th, for one morning session (challenge 5 or 6).

Challenge 1. Promoting the capture, interoperability and quality of high-value data sets across Europe: cross standards alignment, data quality, cross-border access for care and research. This will include the international patient summary experience from Trillium II, mapping approaches by the EHR2EDC project between eHealth and CDISC standards to exchange data between EHRs and ED C systems, the core data sets and rules C3-Cloud used for multimorbidity guidelines and the data set rules needed by i~HD to benchmark data quality.

Challenge 2. Educating and empowering patients across a spectrum from self-care, care pathway decision-making, health system priority-setting, to clinical trials and the reuse of data for research: Explore with patient representatives from Digital Health Europe and C3-Cloud how we can focus data collection and sharing on what matters most to patients, and enable patients to have access to enough information for shared decision-making along their care pathway. Learn how patient preferences can best be reflected in decisions about how health data is used for research.

Challenge 3. Scaling up federated data networks to deliver big data insights for clinical research, personalised medicine and healthcare quality improvement: This challenge embraces issues like the mapping of diverse registries and EHRs to a common data model for research addressed by EHDEN and how to govern the research reuse of health data. Find out from EHR2EDC how GDPR compliance is essential to win hospital trust in connecting to a federated reach network. Explore how all stakeholders should promote and reward more shareable and reusable (FAIRer) data.

Challenge 4. The societal challenges of multimorbidity and polypharmacy that are having the greatest impact on health systems from an ageing society and increased complexity of care, as addressed by C3-Cloud: Multimorbidity is the strongest driver for urgently adopting interoperability standards. This challenge is being addressed by eHealth Action by prioritising the knowledge gaps that research needs to deal with as well as the information flows and service delivery transformations that are needed to meet ageing patient needs. How should health systems be designed for better multimorbidity solutions?

Challenge 5. Addressing the legal and ethical challenges of digital health: Digital health is fueled by data exchange, which demands trust in the integrity of the data and confidence that privacy can be assured. Using data demands that traditional legal concepts of data ownership, stewardship and responsibility are re-examined to ensure that the law supports digital health and allows appropriate data flow. Share experiences with DigitalHealthEurope experts to identify the most pressing legal challenges of using data in digital health and how they can be addressed.

Challenge 6. Boosting digital transformation of health and care: scaling up and evaluation: Digital solutions for health and care can increase the well-being of millions of citizens and radically change the way health and care services are delivered to patients, if designed purposefully and implemented in a cost-effective way. Examine with DigitalHealthEurope main traits of the present EU market of digital solutions for person-centred care, analyse good practices, key drivers and inhibitors for large-scale deployment. Learn how twinning actions can support the scaling up of innovative solutions. Explore how different evaluation approaches can optimise decision-making and boost investments in digital health and care.