Health research collaborations mean sharing data. "We can deliver faster if we identify and remove obstacles early", write Niklas Blomberg, IHI Executive Director, and Magda Chlebus, Executive Director - Science Policy & Regulatory Affairs, EFPIA in the IHI news item about the Data Sharing Playbook, released on 24 July 2024.
Download the IHI - EFPIA Data Sharing Playbook here >
The Data Sharing Playbook captures the experience and collective wisdom of scientists who have travelled this road before.
The Playbook addresses the complex reality of sharing data, including participants’ need to implement internal procedures, regulatory mandates and technical processes. It acknowledges that working with health data is far from trivial, but solving these problems on a project-by-project basis is inefficient. By shedding light on data-sharing workflows and processes, identifying common roadblocks and proposing standardised solutions, the Playbook marks a turning point in unlocking the potential of data projects. It intends to be a user-friendly and comprehensive tool for all those involved in data sharing in IMI/IHI projects. Instead of reinventing the wheel with every health collaboration, researchers now have a detailed and practical guide that allows them to hit the ground running. The Playbook takes the user through the data sharing journey from the outline of the IMI/IHI topic and proposal preparation to the negotiation of the grant and consortium agreement and project execution.
A central message is to start early. This means defining data sharing from the outset, while frontloading decisions on a Data Management Plan as soon as practicable. In the topic writing phase, project participants can identify which type of data will be needed to answer their research question. A consortium should decide on a data-sharing model early (whether that is centralised, federated or a hybrid approach), and select an appropriate data anonymisation strategy. Starting early also provides opportunities to engage internally with colleagues whose support may be required – academic leads, lawyers, and data protection officers among others. This reduces the risk of running into problems down the line. Along with practical and procedural steps, a cultural shift is required: organisations must view sharing as a means of unlocking the power of data for all partners. From there, participants can create a compelling business case to show internal colleagues the added value of data, and where necessary, assign a value to this data as part of IHI partner’s in-kind contribution to a project. Read the full article here >
HARMONY
In several chapters of the Data Sharing Playbook you will find the HARMONY Alliance mentioned among the resources, such as in Chapter 1 about the Public-PrivatePartnerships & Data Sharing Culture, in Chapter 5 about General Data Protection Regulation (GDPR) and as well as in the content about Challenges. We are honored that our 7 years of experience in shaping data sharing and data innovation in hematology are considered a valuable example to open horizons for new health data-focused projects and collaborations.
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Public-private partnership for Big Data in Hematology
HARMONY and HARMONY PLUS are funded through the Innovative Medicines Initiative (IMI), Europe's largest public-private initiative aiming to speed up the development of better and safer medicines for patients. Funding is received from the IMI 2 Joint Undertaking and is listed under grant agreement for HARMONY No. 116026 and grant agreement for HARMONY PLUS No. 945406. This Joint Undertaking receives support from the European Union’s Horizon 2020 Research and Innovation Programme and the European Federation of Pharmaceutical Industries and Associations (EFPIA).
HARMONY Coordination Office
Institute of Biomedical Research of
Salamanca (IBSAL)
Salamanca, Spain
HARMONY Communications
European Hematology Association (EHA)
The Hague, The Netherlands
