Enriching knowledge and enhancing care through health data

Societally Acceptable Codes of Good Practice and SOPs

Governing the Reuse of Health Data for Research

Aims

  • Maintain and promote codes of best practice in information governance, privacy protection and ethics for the uses for health data, especially for research but also for cross-border healthcare and public health.
  • Work with key decision makers and influencers to mutually agree good practices that balance societal benefits and personal privacy.

The Information Governance Task Force

Summary

The i~HD governance team has examined multiple sources of good practice in governing the research use of health data, from projects such as EHR4CR, EMIF, TRANSFoRm, ETRIKS. An important governance starting point is the recently published Innovative Medicines Initiative Code of practice on the secondary use of medical data in European scientific research projects. The team have developed an overarching set of high-level principles and standard operating rules that bring together these project results, combining them with other relevant instruments developed within the informatics and bioinformatics communities. These are now being finalised and will be initially adopted by the post-EHR4CR Champion Programme running the InSite Platform.

Achievements during 2016

  • Completed draft of the i~HD Governance Principles and advance drafts of the i~HD Standard Operating Rules for research sponsors, service providers and hospitals.
  • Active promotion at many European conferences and policy events of the importance of the trustworthy reuse of health data for research and the role of i~HD in developing instruments and other measures to support this.

Plans for 2017

  • Finalise the Codes of Practice, after consultation with key hospital and patient representatives starting at the Hospital Network Workshop.
  • Develop educational materials to support staff in adhering to them.
  • Evolve these codes in the light of experience and new legislation, especially following the GDPR.
  • Collaborate with other groups developing parallel codes for other scientific areas such as life sciences research.
  • Liaise especially with EMIF on the sustainability of its Code of Practice and Data Sharing templates, and their promotion across the IMI BD4BO programme.