1. Francis P. Crawley Clinical Practice Alliance – Europe
The Importance of Digital Health Literacy in Linking Health Research and Healthcare for Patient Outcomes
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
EESC, Brussels, 30 January 2018
Francis P. Crawley Clinical Practice Alliance – Europe
Strategic Initiative for Developing Capacity in Ethical Review 1
FP Crawley, GCPA & SIDCER,

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/874 Mrs. 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 EESC The 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 EESC European Digital Health
‘Towards digital health Electronic information for safe use of 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. 2019 Our health challenges are large
2019 Our 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 Library An Open House: Every citizen is a doorway.
Health Outcomes addressing comprehensive patients’ needs
Good Healthcare Provision Good Research Practice
Diagnostics
Prevention
Therapy
Patient Data BIG DATA
Medicines Data
‘My Story’
‘Our Story’ of
Health
Patients, Healthcare-providers, Sponsors, Researchers
Ethics Committees, Regulators, Policy-makers
Custodianship building 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.