Promoting FAIR principles in the healthcare field

In December, the 3-year EU funded (Horizon 2020), pan-European project FAIR4Health was launched, and three weeks ago I attended its first general assembly in Seville. The overall objective of FAIR4Health is stated as “to facilitate and encourage the European Union (EU) Health Research community to FAIRify, share and reuse their datasets” using publicly available datasets and show the benefits this will have on this community. FAIR4Health is funded under the Science with and for Society (SwafS) programme and follows the principles of the Open Research Data (ORD; see here for some information) and Responsible Research and Innovation (RRI) initiatives. The project has four overarching objectives:

  • encouraging other institutions to join FAIR4Health through outreach;
  • to draft guidelines that can be followed by others and which can be channelled through the RDA to establish a FAIR “certification”;
  • to establish a platform for others to use;
  • to validate the FAIR4Health strategy through development of two case studies.

FAIR4Health is starting off by using publicly available datasets and various partners in the project have contributed 8 datasets ranging in sample size of 60 to over 2 million, with some having multiple observations per individual. These studies also take into account social care observations in many instances.

Whereas in non-clinical research, and other research fields in general, that have already embraced the FAIR revolution, the health research community has not been in a position to do so as easily: the elephant in the room, of course, is the sensitive nature of patient data. Additional concerns for these data include security and anonymisation of data subjects and, although not the primary concern from a technical aspect, these are a major component that is considered. To this end, FAIR4Health will utilise and advance the relatively new technology of privacy-preserving distributed data mining (PPDDM). Moreover, cross comparisons will be made to other FAIR related projects that are not necessarily involved in health research (horizontal approach, such as FAIRsharing, EOSCpilot, OpenAIRE) with those that are involved in health research (vertical approach, such as eTRIKS, BD2K, EHR4CR,). This will be done by analysing current technical, cultural and behavioural barriers, ethical implications, and security and legal requirements in data sharing and reuse. The project will have its own website but aims to deposit data in a pre-existing repository as much as feasible.

As you can probably tell, judging from the many suppositions I’m making, the project is very much in its infancy and there’s a lot of decisions to be made to establish metadata standards, ontologies, file formats, licenses and so forth. To address much of the above, there will be scientific and ethical advisory boards to provide guidance from experts in the field.

At the recent meeting, members from the 17 participant groups, covering 11 different countries, were all present and it was a great opportunity to put faces to names and hammer out the requirements for the project in the short and medium term. The DCC is involved in creating a DMP for the project, and also in outreach and open community engagement, and providing input on ethical aspects. As the outreach element implies, FAIR4Health is also very interested in recruiting new participants and users and there will be a programme to actively encourage this.

So, why am I blogging about this? As I said above, FAIR4Health would love your input. Although aimed at those involved in healthcare itself, the project also aims to involve “citizen scientists” – the societal impacts of the research contained in the project is a strong driver and complies with the SwafS remit. While accepting a difference between open science and FAIR principles, the idea of transparency can still be advocated without compromising sensitive data. Furthermore, we will be hosting a birds of a feather session at the upcoming RDA Plenary 13 at Drexler University, Philadelphia, with the provisional title “Assessing FAIR Data Policy Implementation in Health Research”. This will be a golden opportunity to find out more about FAIR4Health and to join in in the discussion, so please do say hello if you are attending. Follow the project at #FAIR4Health and watch out for the upcoming website!