On 1 December 2016, more than 250 professionals joined in Amersfoort to determine the compass course for the Health-RI initiative. This national initiative aims to establish an interconnected data infrastructure for Dutch personalized medicine and health research. The conference featured inspiring examples of personalized medicine in action and lively discussions about the ethical, technical and political hurdles on the road.
Many medical treatments are successful in only a limited percentage of patients. For instance, cancer drugs are only effective in 25% of cases, as Professor René Bernards (Netherlands Cancer Institute) mentioned at the conference. Scientific breakthroughs and technological innovations create opportunities to make healthcare more efficient by tailoring treatment and prevention to the individual patient, personalized medicine. However, it often takes long before these innovations reach clinical practice. A major obstacle is the lack of an efficient national research infrastructure for health research. “It is our societal responsibility to bring our discoveries to patients,” said Bernards.
Health-RI aims to create a sustainable solution to this problem. It is an initiative of the large infrastructures BBMRI-NL, ELIXIR-NL, and EATRIS-NL (all strongly anchored in European ESFRIs), the eight UMCs (gathered in the Netherlands Federation of University Medical Centres, NFU), DTL, Lygature, and Health~Holland. Health-RI aims to interconnect the existing health research infrastructure, including biobanks, image and data collections, facilities (e.g., for imaging, microscopy, genomics, proteomics, metabolomics, and phenotyping), and IT solutions, thus providing a one stop infrastructure shop for personalized medicine & health researchers.
Health-RI will function as a public utility, and provide a data backbone between the connected facilities. Health-RI will facilitate harmonization and easy adoption of standards for efficiently conducting high quality personalized medicine & health research. To this end, data must be FAIR (Findable, Accessible, Interoperable, Re-usable). This is similar to the European Open Science cloud.
Health-RI focuses on human health in the broadest sense: from prevention to care, and from proof of concept to translation into healthcare and industry practice. The plans will be realized in the coming years. It is a collective strategic program and will be funded from a variety of sources. Gerrit Meijer (Netherlands Cancer Institute, picture): “Health-RI does not just emerge out of the blue; we have been working on different constituent organizations over the last seven to eight years. Health-RI is now supported by more than 70 organizations and recognized by authorities.”
Frank Miedema (UMCU and NFU) addressed a major cause of the slow progress in translational medicine: fragmentation, i.e., expertise, funding, data, sample collections, and image collections are scattered. The NFU strongly supports the development of Health-RI to solve this fragmentation and wants to collaborate with other parties, including the science faculties. Health-RI is well aligned with European initiatives for open science and data sustainability. A major objective of Health-RI is to harmonise the data stewardship process and to offer a joint research environment that makes applications and data available to researchers and research teams. “A better research infrastructure will result in better health outcomes,” concluded Miedema.
The field of oncology has a frontrunner position in personalizing medicine. René Bernards presented several examples of personalized treatment options based on insight in molecular mechanisms that cause disease. He also discussed the challenges that we face, including the high costs of targeted drugs, and the lack of motivation of and incentive for pharmaceutical companies to develop tests to identify patients who actually benefit from drug therapy. “Healthcare payers should embrace biomarkers for drug response; they are the saviours of the healthcare system,” said Bernards. Personalized medicine and health is not only the key to improving patient outcomes, it is also a key element in mitigating healthcare costs.
In the session ‘translating science into clinical practice’, three researchers presented developments that may personalize healthcare in the future. For instance, Jingyuan Fu (Associate Professor in Bioinformatics at UMCG) presented her work on the gut microbiome in Lifelines participants. The composition of the gut microbiome shows significant individual variation and is influenced by a variety of factors, including medication use. She concluded that characterizing the gut microbiome will help us develop personalized medicine and diet solutions. She also stressed that human biobanks and databanks have been crucial in this work. In addition, Marian Joëls (UMCG) discussed big data for the brain and Ruud Schreurs (Radboudumc, AMC) talked about personalized patient-specific dental implant design.
In addition to examples of personalized medicine and health in action, the conference strongly focused on patient and citizen involvement in healthcare and health research, for instance during a panel discussion with Jasper Bovenberg (Legal Pathways), Jacquelien Noordhoek (Dutch Cystic Fibrosis Foundation), Dik Hermans (Vita Valley), and Peter Paul van Benthem (FMS). Ain Aaviksoo from the Ministry of Social Affairs in Estonia discussed the experiences in Estonia, which wants to take a leading role in genome-based personalized medicine. Many e-services already exist and are implemented in Estonia and citizens participate actively.
Margo Brands (NPCF) presented the view of the Dutch Federation of Patient’s Organizations. She stressed the importance of getting the patient’s perspective in the healthcare system in all different stages and aspects (“We want patients to be informed”). Personal Health records are tools to empower patients and support self-management; their value for patients is: Control, Comfort & Trust, Insight, Well-informed professionals, Freedom, Motivation & Fun.
André Dekker (Maastro Clinics, picture below) explained how the Personal Health Train (PHT) project connects research and care. The key concept behind PHT is to bring research to the data rather than the classical solution of bringing data to the research. The PHT is designed to give controlled access to heterogeneous data sources while ensuring maximum privacy protection and maximum engagement of individual patients or citizens. As a prerequisite, health data is made FAIR. Stations containing FAIR data (‘FAIRports’) may be controlled by individuals (‘Personal lockers’), (general) physicians, biobanks, hospitals and (public) data repositories. “This is not just a dream. We are already doing this in several cancer centres,” Dekker said.
Collaboration is at the core of Health-RI. The Netherlands have been pioneers of successful public-private partnerships. The key factor here is to develop a close interaction between scientists from different backgrounds and in different, multidisciplinary settings, ranging from basic to applied, from academic to industrial research. Miriam Koopman (UMCU), Arjen van Rijn (Nikhef), Jan Kimpen (Royal Philips), and Willem Jan Bos (DCRF (formerly DCTF)/STZ) gave inspiring examples of successful public-private collaborations.
At the end of the day, Marian Joëls (UMCG, NFU, picture above) presented a wrap-up, including a summary of ‘What holds us back?’ (fragmentation, money, legislation, ethical issues, taking the first step) and a summary of ‘What can enable?’ (a data chapter in large grant applications; collaboration between NFU, funding agencies, pharma, medical devices, IT companies; involving patients at a very early stage). Health-RI brings many different stakeholders together. The first focus will be to create a shared data backbone.
“I think that we have to promise here that next year, there will be examples of success stories of Health-RI in this meeting. We need your support; we have to do it together,” concluded Joëls.
Links to the presentations can be found on the conference website: http://www.nlhealthresearch.nl/programme-2016/
Pictures: Thijs Rooimans