Enriching knowledge and enhancing care through health data

Report

Around 85 delegates representing 50 hospitals from around Europe participated in the Hospital Network workshop held by the European Institute for Innovation through Health Data (i~HD), in Brussels on February 9, 2017. These hospitals are all committed to making better use of their routinely collected electronic health records, to become better learning health systems, improving quality and safety of care, and re-using health data for research.

Dipak Kalra welcomed the participants on behalf of i~HD. Many more hospitals than expected had registered for this event, sending a clear signal around Europe that our hospitals are ready to accelerate their learning capability from their electronic health records, and to work together to grow best practices in how to do this in a trustworthy way and how to maximise organisational value from new insights and knowledge discovery. He introduced i~HD itself, and the role it is playing in breaking down the barriers and developing enablers for reusing health data.

The audience learned from Dirk Colaert about the research challenges that remain in advancing the capability of health ICT solutions to support coordinated and integrated care, centring on the patient, optimising both healthcare and research processes. Many of these topics are expected to be part of future calls for research proposals under Horizon 2020. Tomas Andersson presented the vision of a strong partnership relationship between the pharma industry and hospitals towards jointly identifying the knowledge needed to improve clinical outcomes and accelerate healthcare innovation. Katie Gallagher emphasised the many and important roles that empowered patients can play in self-managing their health conditions, prevention and playing a greater part in clinical research. The European Patients’ Forum is working alongside many national patient associations and the European Commission to promote and support the active participation of patients in health decision making and in research. Jacques Demotes explained how clinical research can be undertaken to a high standard, by suitably trained staff in well organised research facilities, and well coordinated between trial centres in the growing number of multi-national clinical trials. ECRIN plays a vital role in developing the standards for this and accrediting clinical trial centres to these standards. The audience learned from Pascal Garel that hospitals all over Europe are needing to innovate in order to take advantage of the very real benefits offered through health ICT, robotics and machine learning technologies, and to deliver more personalised medicine. This includes providing more integrated care and centring care more strongly on the patient including shared decision-making.

Turning the spotlight on specific hospitals that have already achieved significant advances in integrating and reusing their data for research and quality improvement, the audience learned from Philippe Lechat of the Assistance Publique - Hôpitaux de Paris, Tony Amato from the Policlinico Gemelli in Rome and Giuseppe Banfi from the Fondazione Centro San Raffaele in Milan about how they have established a culture and governance around combining data from multiple local hospitals, and developed clinical data warehouses that can be analysed securely using advanced electronic health record systems and clinical research workflow systems. The speakers described how these systems have made the conduct and monitoring of clinical research more efficient, enabled accelerated knowledge discovery and the translation of that knowledge into improved health care. John O’Brien explained how good quality data is now vital for hospitals to deliver a high quality and efficient service, to focus their services on patients and to recruit and retain excellent staff. Health information and EHR systems are a critical part of hospital operation: a factor of production. However, it is essential that these systems are quality assured and that the information workforce is suitably trained and credentialed.

i~HD is developing good practices and support resources to help accelerate the capability of hospitals and other stakeholders to make maximum use of health data. Pascal Coorevits described the newly launched i~HD Quality Seal for Clinical Research Platforms (QS4RP) that has been jointly developed with EuroRec and is now starting to be applied to assess platform service providers and their products. Nathan Lea described the importance of trust and trustworthiness, especially from patients, in the reuse of EHRs for research and outlined the instruments that i~HD has developed to support good and trustworthy practice. Carlos Sáez explained the importance of good quality data to making correct decisions about healthcare and making valid inferences for research, and the work of the i~HD Data Quality Task Force in developing assessment methods and improvement strategies.

During afternoon break-out sessions the audience learned more about data quality and methods to improve this. There was very strong interest among many of these hospitals to form a data quality improvement community, which the Task Force will support through future workshops, online resources and dedicated on site visits. In the parallel break-out sessions participants learned more about the challenges of meeting societal concerns and complying with an evolving legal landscape, in the light of the new GDPR. They heard about the approach to these challenges being taken by i~HD, and the resources it has been developing to help promote legally acceptable and societally trusted reuse of EHRs for research. It was recognised that this is an ongoing challenge, and many of the hospital participants would like to collaborate with each other through i~HD to share and co-create best practices. Working with patient organisations such as the EPF was seen as vital to this success.

After the break-out sessions there was a panel discussion with Marie Sebille (Sanofi), Mats Sundgren (AstraZeneca), Bart Vannieuwenhuyse (Janssen) and Gareth Milborrow (ICON) about how hospitals and pharma can maximise their synergies to improve health outcomes in Europe. The discussion topics included how communities can work together to develop and promote better patient reported outcome measures and help these become the key focus of research and healthcare quality improvement.

Dipak Kalra emphasised to the audience that this event was the launch of the i~HD Hospital Network of Excellence: a community of hospitals working together across Europe to help each other to improve quality and maximise their contribution to research through better use of their health data. Several of the speakers were among those who had kindly agreed to join a steering committee to help drive forward this momentum and to guide the ways in which we work together to achieve these aims.

Aims of the i~HD Network of Excellence for hospitals:

  • Create a mutual support and shared learning community of hospitals wishing to accelerate their uses of health (EHR) data for clinical research and to become better learning health systems.
  • Develop and promote good governance practices to enable trustworthy internal and external reuse of hospital EHR data for knowledge discovery.
  • Develop and deliver education, good practices and tools (such as data quality improvement strategies) that maximise the capability to reuse health data.
  • Help hospitals to optimise the ways in which they use and benefit from their EHR systems.
  • Support hospitals with demonstrating the value to themselves and to other stakeholders from good uses of their health data.