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Francis P. Crawley Clinical Practice Alliance – Europe

The Importance of Digital Health Literacy in Linking Health Research and Healthcare for Patient Outcomes Digital Health Literacy: Public Hearing Brussels, Belgium 30 January 2019. Francis P. Crawley Clinical Practice Alliance – Europe

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Francis P. Crawley Clinical Practice Alliance – Europe

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  1. The Importance of Digital Health Literacy in Linking Health Research and Healthcare for Patient OutcomesDigital Health Literacy: Public HearingBrussels, Belgium30 January 2019 Francis P. CrawleyClinical Practice Alliance – Europe Strategic Initiative for Developing Capacity in Ethical Review fpc@gcpalliance.org 1

  2. The Vantage Point • EU GCP Dir/Reg and Paediatric Regulation • Chair WG, Guidelines and Recommendations for European Ethics Committees (Brussels 1995/7) • Past member UNAIDS ERC • Chair WHO WGs on Guidelines for Ethics Committees & DSMBs • Co-founder, Strategic Initiative for Developing Capacity in Ethical Review (SIDCER) • Past Member, WHO GCP & ICTRP Committees • Member, EORTC IRB; Chair, INCTR EC • Member, EWG, European Academy of Paediatrics • Co-founder, European Network for Research on Alternating Hemiplegia (ENRAH) • EUROSOCAP, ENCCA, nEUroped, RESPECT, EBC

  3. Framing Our Discussion ‘Digital health literacy – for citizen-friendly healthcare in Europe in times of demographic change’ (Own-initiative opinion) preliminary draft opinion INT/874Mrs. Renate Heinisch, Rapporteur

  4. Digital Health Literacy (DHL) • Digital health literacy requires more than the ability to read and write • It also requires the skills and knowledge to access, interpret, and apply medical information • This further requires having access to health databases and medical literature.

  5. DHL: A Critical Pathway • The Digital Society – a revolution in reading and writing • Fundamental changes to scientific methodology and scientific reporting • New norms for writing and publishing • New avenues for patients • New expectations from patients

  6. European Objectives in Health Research • Better health for all • A more competitive European health industry and care sector • Maximising the digital potential • Addressing health as a global challenge

  7. DHL for All Citizens in the EU • For citizens – of all ages and all demographic groups • For healthcare policy makers and their advisors • For healthcare providers – in all aspects of healthcare provision • For healthcare researchers – at all levels and in all aspects of health-related research • For the manufacturers of health-related products

  8. The EESCThe European Digital Agenda ‘A Digital Agenda for Europe’COM(2010) 245 final 2.3 Given the commitment to eInclusion in the Digital [Health] Agenda, the Council should support initiatives across the EU to introduce school children, older citizens, and socially disadvantaged citizens to the use of broadband [health] technology (e.g. Web-based learning, video conferencing, on-line public services, etc). All education [healthcare] programmes should be based on best practices.

  9. The EESCEuropean Digital Health ‘Towards digital healthElectronic information for safe useof medicinal products’(INT/767, 16 Sept 2015) 1.2 The Committee notes that people seeking information, patients and healthcare professionals have repeatedly stressed the need for full, accurate and up-to-date information on medicinal products and for a single digital market. ‘a single portal [where] there is a trustworthy and in many ways easily accessible source of officially authorised information’

  10. 2019Our health challenges are large.Our need to understand medicine great. Dr. He Jiankui presenting on utilizing CRISPR/Cas9 to edit human embryos at the 2nd International Summit on Human Genome Editing, Hong Kong, 28 November 2018

  11. Council of Europe Policy makers should invest resources in digital literacy and education to increase data subjects’ awareness and understanding of AI applications and their effects. They should also encourage professional training for AI developers to raise awareness and understanding of the potential effects of AI on individuals and society. Consultative Committee of the Convention for the Protection of Individuals with regard to Automated Processing of Personal Data (Convention 108). ‘Guidelines on Artificial Intelligence and Data Protection.’ TPC(2019)0, Strasbourg, 25 January 2019.

  12. The Scope of DHL • Schools and universities • The media: print and electronic • Electronic health records, patient registries, and research databases • Open Publication (Plan S, cOAlition S, Open Pharma) • Open science • Access to medicines and (all) health technologies

  13. The European Health LibraryAn Open House: Every citizen is a doorway. Health Outcomesaddressing comprehensive patients’ needs Good Healthcare Provision Good Research Practice Diagnostics Prevention Therapy ‘My Story’ ‘Our Story’ of Health Patient DataBIG DATA Medicines Data Patients, Healthcare-providers, Sponsors, Researchers Ethics Committees, Regulators, Policy-makers Custodianshipbuilding a European foundation of trust in health resources,health services, health research, and health knowledge

  14. Conclusion • DHL is not simply about citizens accessing and understanding health information. • DHL is primarily about decision-making in health research and healthcare. • DHL requires open and collectively held health records, health databases, and health publications.

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