EHA should promote and contribute sustainable, representative, high-quality data structures and sources.

EHA should:

• Promote and contribute to transparent, inclusive, and ethical use of novel analytical tooling for evidence generation
• Ensure best data practices are shared across groups within EHA/hematology
• Keep a Health Data Steering Group in place to oversee this on an ad hoc basis

EHA should ensure, via governance structures, that FAIR data principles are upheld in:

• Large data collectives used by the overarching committees and SWGs
• Internal management-related databases

To facilitate the design and implementation of novel ‘PM trials,’ EHA should ensure that the data structures for capturing, storing, and disseminating data:

• Are robust
• Adhere to the EHA Health Data Strategy and FAIR data principles

EHA should:

• Support and promote community-approved and developed open data models
• Advocate for (or even provide) funding for developing high-quality data standards

EHA should:

• Position itself in the vanguard of these efforts
• Monitor and proactively engage with initiatives of EU policymakers and regulators (EC, EMA)
• Ensure that relevant opportunities are brought to the attention of the appropriate committees and networks of EHA

EHA should engage with its patient advocacy groups and SWGs to promote the capture of critical PROM/PREM on a disease-specific basis. These will then be integrated, harmonized, and disseminated.

EHA should also ensure that, via its structures, critcial PROM/PREM are included in every layer of EHA’s data collection, storage, and dissemination.

In addition, EHA should:

• Support and promote development of advanced wearable monitoring technologies (patient measured outcomes) via strategic pilot initiatives (e.g. grants, public-private projects)
• Empower patient data ownership

EHA should facilitate the sustainability of these centralized repositories, through a combination of direct and indirect support.

EHA should also promote the addition of prospectively acquired high-quality trial type datasets to the existing repositories. In particular, it should promote those that involve novel targeted agents—thus facilitating our Personalized Medicine policy.

In addition, EHA should facilitate links between centralized and federated RWD datasets.