Enriching knowledge and enhancing care through health data

Joining the Dots Conference

 

Ensuring better data for person-centred health and care, optimised research and Learning Health Systems

 

Come and learn from seven leading European initiatives
Contribute to key recommendations and future strategies for Europe

 

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 to the nearby eHealth Network meeting during our second day. We will learn of their feedback at the end our conference.

In order to guide the discussion sessions, i-HD will be bringing together leading European projects that have tackled some major health data challenges. You will participate in three of the six sessions (see challenges below). These sessions will be led by European thought leaders who will exchange use cases, insights, success and challenges. DigitalHealthEurope will contribute multi-stakeholder expertise to help shape actionable policy recommendations. The final sessions on Thursday 28th will focus on how EHR systems can be adapted to guide clinicians and patients to manage multimorbidity, starting with lunch-time demonstrations of C3-Cloud project’s clinician and patient solutions.

So be prepared for a very hands-on and interactive think-tank conference!

 

 

 

 

Make an informed choice and find out more about the contributing projects:

  • C3-Cloud aims 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 is coordinating and supporting efforts towards an interoperable international patient summary.
  • DigitalHealthEurope undertakes 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 wants 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 to accelerate research through more trustworthy reuse of health data. It is a membership-based organisation with members from pharma, healthcare providers, 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) is developing 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 wellbeing, disease, treatments, outcomes and new therapeutics and devices.

 

Challenges we will tackle during the parallel sessions.

On Wednesday 27th you can register for one morning session (challenge 1 or 2) and one afternoon session (challenge 3 or 4).  On Thursday 28th you can register 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 has 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 increase 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 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 scaling up of innovative solutions. Explore how different evaluation approaches can optimise decision making and boost investments in digital health and care.

 

 

 

Participation is free but registration is required.  

 

In summary

Why should you attend? Because you want to be part of scaling-up the success conditions for the best health data reuse in co-creation with key digital health and research thought leaders.

Who should attend? All those who want to contribute to key recommendations and future strategies for Europe: patient organisations, health professionals, healthcare providers and payers, research organisations, EHR system vendors and standards bodies.

Our ultimate goal? Finalise a list of forceful calls to action for European Health Ministries.

 

C3-Cloud

eHAction

 The European Institute for Innovation through Health Data

Trillium II

DigitalHealthEurope

 

C3-Cloud, Trillium II, DigitalHealthEurope, eHAction, EHR2EDC, EHDEN are (partially) funded by the E.C.

European Commission

IMI Innovative Medicines Initiative

Horizon 2020 - The EU Framework Programme for Research and Innovation

EIT Health