HOW TO LEVERAGE VOLUNTARY DATA
SHARING IN A DATA SPACE?

What is the problem?

Increased data sharing is required to deal with today’s societal, economic and environmental challenges. But despite the non-rivalrous nature of data (meaning that at a technological level, data are infinitely usable by multiple entities simultaneously), many key actors may lack access to data because there are limited venues for secure, voluntary data sharing. Privacy issues and fears of losing competitive advantage are some of the most common concerns cited by those who would otherwise be willing to voluntarily share their data.  

Scenario
The study of rare diseases would benefit from health data voluntarily released by patients and hospitals. The combination of data from various sources can generate new insights into rare diseases and speed up innovation in the field. In this context, a trustworthy actor data intermediary that collects, manages and processes data made available for the public good, or distributes the data for the general interest from the parties involved is needed.  

Proposed Solutions

Against this background, data spaces offer a protected environment to exchange data for the public benefit. To enable new ways of sharing data among a wider range of societal actors, the Data Governance Act (Chapter IV) also introduces a new category of data intermediary – “data altruism organisations” – to facilitate the voluntary sharing of data for objectives of general interest. Data altruism allows data holders and data subjects to select the type of data, the purpose of sharing such data, the duration, and the range of data users who will benefit from it. Engaging in data altruism can help to redistribute the value of data across society and increase public welfare. 

Selected resources
  • Carballa Smichowski B, Duch Brown N & Martens B. "To pool or to pull back? An economic analysis of health data pooling," JRC Working Papers on Digital Economy 2021-06, Joint Research Centre (Seville site) 
  • European Commission. Proposal for a REGULATION OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL on European data governance (Data Governance Act), 2020. 
  • Jones, C. I., and Tonetti, C. (2020). "Nonrivalry and the Economics of Data." American Economic Review, 110 (9): 2819-58. 
  • Ponti M. & Craglia M. Citizen-generated data for public policy, European Commission, Ispra, 2020, JRC120231 

DOWNLOAD PDF

HOW To's_Organisational_VoluntaryDataSharing.pdf



Recommendations
  • Data providers
    • Share data on altruistic grounds
    • Collaborate with data altruism organisations
    • Establish a data altruism organisation 
  • Data users
    • Credit contributions of data 
    • Create incentives for data holders to share data on an altruistic basis 
  • Public authorities
    • Assist and support data altruism organisations
    • Reward collaboration with recognised data altruism organisations  
Disclaimer: The views expressed are purely those of the authors and may not in any circumstances be regarded as stating an official position of the European Commission. 

  • No labels