Scientific breakthroughs and technological innovations create opportunities to tailor healthcare to the individual patient, personalised medicine. However, it often takes long before these innovations reach clinical practice. An important obstacle is the lack of an efficient national biomedical research infrastructure. An impressive list of Dutch research organisations has now joined forces to change this situation: BBMRI-NL, DTL/ELIXIR-NL, EATRIS, Federa/COREON, FHI, Federatie Medisch Specialist, NFU, ZonMw, NWO, Diabetesfonds, Hartstichting, Reumafonds, MLDS, Inspire2Live, SURFSara, and the Top Sector Life Sciences & Health. As a first step, they organised the conference Empowering Personalised Medicine and Health Research on 4 November 2015.
Personalised medicine tailors healthcare (i.e., prevention, diagnostics, prognostics, or treatment) to the individual patient or healthy individual based on his or her molecular characteristics. These may be biomarkers such as DNA variations that predict the success of a treatment. But personalised medicine is more than biomarkers. It is often called P4 medicine: personal, preventive, predictive, and participatory. The holy grail of P4 medicine is preventing disease and managing one’s personal health rather than managing disease.
‘P4 medicine is a wonderful prospect, but we have quite a long way to go before the scientific progress can be applied in clinical practice’, says Dr Ruben Kok (DTL/ELIXIR-NL). ‘The technological advances that will make personalised medicine possible have also resulted in an explosive growth of complex research data. It is imperative that research data become available for combinatorial analysis among scientific communities, while respecting privacy restrictions. This calls for a clever and safe way to store, share, and combine the data. We need a highly advanced research data infrastructure to make this possible, advanced both in terms of ICT and in terms of data interoperability and quality assurance. Building the required data handling expertise will be crucial.’
Han Laméris (FMS) continues: ‘Speakers at the Empowering Personalised Medicine and Health Research conference presented several research data infrastructures that already exist in the Netherlands. We discussed best practices and obstacles that block the road from bench to bedside. In order to get to a point where personalized medicine is no longer a dream, the stakeholders involved need to connect and collaborate. This conference was a first important step.’
Science journalist Simon Rozendaal (Elsevier) chaired the conference. He says: ‘It was not until I prepared for this conference that I truly appreciated the massive volume of data that is coming our way. For me, this was a key point at this meeting: everyone was talking about the upcoming tsunami of data.’
At the conference, several speakers shared their experiences in collaborating and building national infrastructures. One example is the Data4lifesciences programme. This programme is coordinated by the Netherlands Federation of University Medical Centres (NFU) and it builds on founding initiatives such as BBMRI-NL and DTL. Data4lifesciences aims to create a shared infrastructure for the eight Dutch UMCs. This will make their biomedical research more efficient. The programme has been in preparation for several years now and it is delivering its first results.
The basis for the implementation of the Data4lifesciences infrastructure is a manual for researchers on how to handle their research data (data stewardship). The first version of this Handbook for Adequate Natural Data Stewardship (HANDS) was presented at the conference by Dr Paula Jansen (Erasmus MC). She explains: ‘HANDS’ guidelines relate to accountability, use and reuse of data, privacy protection, involvement of patient organisations, taking responsibility for storing and sharing of data, legislation, and regulations. The FAIR concept that was developed by DTL is our guiding principle: making data Findable, Accessible, Interoperable, and Reusable. HANDS is a living document on the Data4lifesciences website, that offers guidelines as well as practical tools and solutions for researchers. We decided on a living online document because we plan to continually improve the content following the rapid technological and legal developments. In addition, we want to share best practices and respond to researchers’ questions, so we sincerely invite people to participate actively.‘
The conference hosted several inspiring speakers. Professor Hans Clevers (Hubrecht Institute) gave a fascinating talk about the champions of all stem cells, confetti mice, mini-guts, and a living cancer biobank. Dr Nicky Hekster showed how IBM’s Watson Health supercomputer can serve both as a second opinion system for healthcare providers and as a method to expedite scientific research. (‘It is not big brother; it is just Watson.’) Professor Bob Löwenberg, founder of the HOVON research infrastructure (Haemato Oncology Foundation for Adults in the Netherlands, which has existed for thirty years and is considered a best practice in this field), shared his secrets to success in a video interview. (‘Focus on those who want; the others will come later.’) Dr Niklas Blomberg (ELIXIR) concluded the day with his story on building the European ELIXIR framework for data exchange. He stressed that we are making great progress, but that there is still an immense task ahead of us.
Gerrit Meijer (BBMRI-NL): ‘The conference demonstrated the great spirit of collaboration in this field. And many stakeholders from outside the research infrastructure field participated, including research funders, all of whom responded very enthusiastically to the initiative.’ Rob Hooft (DTL) adds: ‘I did not know everyone that was present. That is a good sign because it means that we are reaching out to new people. My hope is that more and more people will get to know our organisations through this meeting.’
Conference attendee Kees van Bochove (CEO at bioinformatics company the Hyve) is positive as well: ‘It is good that so many different stakeholders gathered. Dutch people are good at coming up with initiatives, but we often fail to follow through. This day will help us to move things forward. I really think that it is crucial that we start collaborating more.’
David van Enckevort (Technical Project Lead at UMCG): ‘For me, the conference has been an excellent opportunity for networking. It was very useful because several of my research partners were present. And I do not have a biomedical background, so I have heard many new things at the conference.‘ Dr Elisa Hoekstra (Project Leader at Genetics department, UMCG) adds: ‘The conference was well-organised. I have heard several inspiring examples of technological innovations, for instance in the field of personalised cancer treatment.’
The conference’s discussion sessions allowed participants to jointly identify obstacles that block the road from bench to bedside. One major concern of many attendees was the long-term sustainability of the existing infrastructures, i.e., they often do not have a strong funding basis. In addition, regulations were frequently mentioned as a large challenge.
The participants also mentioned that some groups are missing in the discussion. Simon Rozendaal: ‘It is great that so many parties gathered at the conference, but I did miss the pharmaceutical industry. Pharmaceutical companies will undoubtedly play a key role in bringing personalised medicine into clinical practice, so they should have been there. In addition, I would have liked to hear more about biomarkers: which biomarkers are out there and how can we apply them more efficiently in clinical practice? So there is room for improvement in next year’s edition of this conference.’
The future is bright
Gerrit Meijer concludes: ‘The event will have follow up in multiple ways. We aim to make this conference an annual event. And, perhaps more importantly, BBMRI-NL, DTL/ELIXIR-NL, and EATRIS have taken the initiative to start active discussions with all stakeholders on the optimal way to build an effective infrastructure empowering personalized medicine and health research in the Netherlands.’