Vall d’Hebron Research Institute and Salus.Coop (a citizens’ data cooperative for health research) have signed a pioneering collaboration agreement. For the first time in Catalonia, any citizen will be able to donate their data for a health research project. In the same manner as one would give blood or an organ, citizens will be able to transfer their data from a mobile application to the researchers on a research project. These researchers may maintain direct contact through surveys or request new data to enrich their research.

COVID-19 has made it abundantly clear that research (and especially epidemiology) needs to take into account factors that go beyond the activity of the public health system: geolocalisation, steps[A1] , hours of sleep or the results of a test carried out in a private laboratory are just a few examples.[A2]  These are data that have a very high value for researchers and which are stored in different environments (on the device itself, in the cloud or the apps that record them). The citizen, as the owner of these data, has the right to use or transfer them as he or she see fit.

Under what terms are these data transferred? Health research projects for public interest for non-commercial purposes, with the commitment to share the results openly and freely, respecting the utmost privacy of the donor and with the option for the donor to withdraw from being a donor at any time are the five [A3] conditions detailed in the first licence for the transfer of data developed by Salus.Coop.[A4] 

Dr Lluisa Montesinos Magraner, co-ordinator of the Vall d’Hebron University Hospital Spinal Cord Injury Unit and Head of the Vall d’Hebron Research Institute Emerging Research Group in Physical Medicine and Rehabilitation, affirms that this new way of relating with the citizens is a shift in the research paradigm: “Citizens cease being a subject of passive study. With their complicity, it will be possible to generate more scientific knowledge concerning all the unknowns still surrounding COVID-19 in a quick and useful manner”. According to Dr Joan Guanyabens, Chairman of Salus.Coop and co-founder of the co-operative “right now, citizen’s data are being used without their consent. Now is the time for them to take control of their data, use them as they see fit and transfer them to whomever they please”.

It is expected that the first projects will commence in July.

Vall d’Hebron will participate with two projects

First, there is an ongoing project dedicated to the study of COVID-19 in under 18s in Catalonia, co-ordinated by Doctors Pere Soler and Antoni Soriano, members of the Vall d’Hebron Research Institute (VHIR) Infection in the Immunodepressed Paediatric Patient research group. The main purpose of this project is to estimate the prevalence and identify COVID-19 risk factors present in under 18s in Catalonia, as well as to study the manifestations of the sick with a clinical presentation over time. Vall d’Hebron, in conjunction with the paediatric teams at the Primary Care centres of Catalonia and other hospital centres, forming part of the COPEDI-CAT research group, will make use of a questionnaire that gathers sociodemographic and clinical data in order to evaluate the prevalence, risk factors and repercussions of the presentation of symptoms in minors in our area. “This will help establish how to deal with these patients and, if necessary, make changes in the public health measures addressing COVID-19 in the different age groups", affirms Dr Soriano, lead researcher of the Vall d’Hebron Infectious Diseases Immunodepressed Paediatric Patient research group.

The second project, coordinated by Dr Luisa Montesinos, will evaluate the physical activity self-reported in people with functional diversity within a pandemic setting. The pathologies of interest are spinal cord injury, spina bifida, the after-effects of poliomyelitis and the after-effects of strokes, to name a few. The physical activity aims to evaluate a specific questionnaire for people with functional diversity using the Spanish version of the PASIPD questionnaire. Likewise, the possibility of gathering data on the participants in real time through the Google Fit application or the iOS version, Polar Flow or MiFit (smartband or smartwatches) is being considered, with those that have the ability to walk being of special interest.

Salus.Coop is cofinanced by the “Unique Projects” Social Economy programme.