Meeting Report Health-RI 2017

From plans to action

On 8 December 2017, the Jaarbeurs in Utrecht hosted the third Health-RI conference. Health-RI co-chair Ronald Stolk (UMCG, RUG): “There were more than 350 registrations, so the number of participants has increased substantially compared to last year. This reflects the timeliness of the initiative. In contrast to the previous two conferences, where we mainly sketched our plans, we were now able to show plenty of concrete examples of what Health-RI can do for researchers.”

Slides of the presentations are available here.

The national Health-RI initiative aims to establish an interconnected infrastructure for Dutch personalised health research. The initiative is endorsed by more than 70 organisations, including research institutions, patient organisations, companies, governmental organisations, and research funders. Health-RI co-chair Gerrit Meijer (Netherlands Cancer Institute): “A lot of great health research is being done, but it is a challenge to bring the results to patients and improve healthcare. This innovation gap is caused by fragmentation of data, sample collections, image collections, and more. Health-RI can provide the solution to this problem.” Meijer presented the Health-RI business plan at the conference.

Business plan

The Health-RI business plan is an ambitious yet realistic plan to assemble all stakeholders and create a sustainable infrastructure that will facilitate world-class personalised health research in the Netherlands. It will build on existing infrastructures and attract new partners. In 2018, the current temporary governance will evolve into a permanent governance as described in the plan. Meijer: “Importantly, Health-RI governance will be inclusive, i.e., all ten chambers of stakeholders will be present in the general assembly and each chamber appoints a representative in the strategic committee. Building on the current strength of public-private partnership research in the Netherlands, Health-RI will bring together the best of the country’s expertise and resources for open-science health research. It will make these accessible to researchers by connecting activities and shared services, and it will act as a collective national and international voice for the sector.” To conclude the session, several Health-RI partners introduced themselves and symbolically placed a building block on a Health-RI wall.

Perspectives on why

The conference elaborated on why we need Health-RI from three points of view. Barend Mons (GO FAIR) presented the patient’s perspective on behalf of Dirk-Jan van der Pol: “Health-RI should bring the patient in as a researcher.” Andrew Morris (Health Research UK) discussed the researcher’s perspective and shared his experiences from the UK: “Health-RI is bold, ambitious, and enterprising. It will require a depth of collaboration I have never seen before.” Martijntje Bakker (ZonMw) stressed the importance of an interconnected research infrastructure from a research funder’s perspective: “We believe that a one-stop-shop can make a difference and that Health-RI can be this shop.”

Developments and opportunities

Six parallel sessions addressed the latest developments and opportunities in personalised health research and:

  • Clinical research data. This session was organised by the Netherlands Orthopaedic Association (NOV). Taco Gosens (Elisabeth-TweeSteden Hospital) and Wim Schreurs (Radboudumc) presented the Dutch Arthroplasty Register (LROI) and addressed its value for medical specialists in quality control and scientific research. There was a productive discussion on how to deal with the challenges that registries such as the LROI face.
  • FAIR principles. FAIR Data stewardship (Findable, Accessible, Interoperable, Re-usable) constitutes a key component of the Health-RI initiative because it stimulates secure re-use of resources. In the ‘Science goes FAIR’ parallel session, Luiz Bonino (GO FAIR) presented the FAIR Data tools developed by his group at DTL. Michel Dumontier (Maastricht University) announced the publication of the FAIR metrics to assess the FAIRness of digital resources. The FAIR principles are also a hallmark of the Personal Health Train Initiative, that was frequently mentioned during the day.
  • Multi-omics in biomarker discovery. Lodewyk Wessels (NKI/AVL) discussed how integrating multiple types of omics data can improve drug response prediction. Eline Slagboom (LUMC) showed how sharing and integrating various types of molecular data in BBMRI has resulted in novel biomarkers for and insights in mechanisms of ageing.
  • Biomedical research tools, big data analyses, and collaborative IT platforms. Wessel Kraaij (Leiden University, TNO) addressed the challenges and opportunities of unlocking new types of data, and how this allows for answering new questions using machine-learning. Peter Michielse (SURF) presented current developments in trusted infrastructures to cover the increasing demands for data sharing, data linking, analytical solutions, and support.
  • Imaging data as a biomarker resource. Hugo Aerts (Harvard University) nicely introduced the potential of artificial intelligence in radiology data analysis. He illustrated how combining clinical, molecular, and radiomics data can improve diagnostics and facilitate cancer precision medicine. Meike Vernooij (Erasmus MC) provided examples of the impact of population imaging on clinical practice. Population imaging may produce insight in disease aetiology, provide new markers for disease risk, and result in reference data. She also discussed why we need a research infrastructure to facilitate harmonising, sharing, extracting, and analysing combinations of quantitative imaging biomarkers.
  • Ethical, legal, and social challenges of linking health data. Erik Flikkenschild (LUMC) explained how researchers can link personal data without breaching privacy and how collaboration of national expert groups plays an essential role in securely linking records. Jasper Bovenberg and Sandra van den Belt (BBMRI-NL) presented the OMEGA Linkage Use Case, where pseudonymised BSNs are used to link records of epidemiological cohorts and biobanks with disease registries. This session was followed by an interactive discussion on the impact of the General Data Protection Regulation on health research and how to apply the Regulation’s exemptions for research.

During the breaks, the conference offered excellent opportunities to meet like-minded people from academia and industry, government, and health foundations to discuss ideas and explore possible collaborations. There were almost 80 poster presentations and many demonstrations of services and tools that constitute key components of Health-RI. Castor EDC’s Derk Arts gave a lunch presentation ‘The way forward for medical research is user-friendly, rewarding technology’.

Concrete examples

Many Health-RI partners offer services and resources to support researchers. Martijntje Bakker (ZonMw): “However, it is very complex for researchers to find their way to such research infrastructure, for instance to find out how to gain access. Health-RI can help to improve this.” An overview of several key services and resources is already available on the Health-RI website. The conference also featured six pitches of infrastructure that is currently available to researchers.

Hakim Achterberg (Erasmus MC) presented a quantitative imaging biomarker infrastructure, in part based on the Extensible Neuroimaging Archive Toolkit (XNAT),  that facilitates storage, management, productivity, annotations, image analysis, and quality assurance tasks for imaging data. This research infrastructure is already used in various projects—such as the CVON Hear-Brain Connection and the Rotterdam Scan Study. André Uitterlinden (Erasmus MC) pitched the services of the Erasmus MC Genomics Core Facility, including SNP genotyping using arrays and the associated expertise in study design, data analysis, and data storage. Johan van Soest (Maastro Clinic) presented the Personal Health Train Initiative (PHT), which allows researchers to query distributed databases via a secure, authenticated network, only requiring data owners to make their data FAIR.

Erik van Iperen (Durrer Center) pitched the BBMRI Request Portal ‘Podium’, which is an online one-stop-shop to request samples, images, and data from multiple national health registries, health databases, image archives, and biobanks. Robert Verheij (NIVEL) invited researchers to use the NIVEL primary care database, with contains routinely recorded data from health care providers. Salome Scholtens (UMCG) presented the efforts of the Data Federation Hub in Groningen to link and support research infrastructure initiatives in Groningen. She invited researchers in Groningen to contact the Hub and colleagues from elsewhere to exchange experiences.

Wrap-up

Like last year, Marian Joëls (UMCG, NFU) concluded the day. “We had a large audience and there were enthusiastic discussions. During the day, we have seen several examples of infrastructure and tools that are available to you all. Now, several challenges lie ahead of us. For instance, we will need people that can truly dedicate time to Health-RI, as well as a start-up budget and a commitment from the stakeholders, also financially. Now is the time for us all to show that we can really unite the groups and move forward.”

The Health-RI conference was organised by BBMRI-NL, DTL, EATRIS-NL, ELIXIR-NL, Federatie Medisch Specialisten (FMS), Lygature, NFU, and SURF. We thank our main partner Health~Holland and the conference sponsors (Castor EDC, The Hyve, Hartwig Medical Foundation, Quaero Systems, RSRCH, and the Groningen Data Federation HUB) for their support.