Electronic Health Records for Clinical Research
INSTITUTE FOR INNOVATION THR~UGH HEALTH DATA Dipak Kalra Georges - - PowerPoint PPT Presentation
INSTITUTE FOR INNOVATION THR~UGH HEALTH DATA Dipak Kalra Georges - - PowerPoint PPT Presentation
THE EUROPEAN INSTITUTE FOR INNOVATION THR~UGH HEALTH DATA Dipak Kalra Georges De Moor President Advisory Board Chair Electronic Health Records for Clinical Research Responding to a convergence of needs Clinical Research needs Healthcare
Responding to a convergence of needs
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Need to remove the bottlenecks to accessing and combining health data from diverse sources across Europe Clinical Research needs Optimise clinical research processes
- achieve faster and more accurate
patient identification
- identify sites that have access to the
most suitable patients
- reduce protocol amendments
Enhance access to Real World Data
- study the use of new medicines in real
populations
- conduct comparative effectiveness
studies
- monitor long term safety
- gather evidence for adaptive licensing
Healthcare needs Improve quality and safety of care
- enhance care co-ordination
- increase adherence to clinical
evidence
- reduce medical errors and treatment
delays Support patients in self-care and health maintenance Improve efficiency of care
- optimise care pathways to improve
- utcomes
- collate evidence for public health
strategy and decision-making
The Learning Health System
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Slide courtesy of Prof. Brendan Delaney
The ter m Lea r ni ng H ea l th Sy stem ( LH S) w a s f i r st a dopted by the U S I nst i t u t e
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M edi c i ne i n 20 7 . I t i s now bei ng i nc r ea s i ng l y a ppl i ed i n the U S a nd a r
- und
the w or l d to des c r i be c y c l es tha t i nc l ude da t a c
- l
l ec t i
- n
, a na l y t i c s to g ener a te c l i ni c a l k now l edg e, a nd f eedba c k
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tha t k now l edg e i n a f
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m tha t di r ec tl y i nf l u e nce s the pr
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es s
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c a r e. Lea r ni ng c y c l es m a y be l
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a l , na t i
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al or g l
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l a nd the a ppl i c a t i
- n
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k now l edg e m a y ta k e pl a c e vi a dec i s i
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s uppor t a t the poi nt
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c a r e,
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thr
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h
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g a ni z a t i
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a l
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reg i
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l str a teg i es . The k ey di f f er enc e betw een the LH S a nd tr a di t i
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al r es ea r c h a nd k now l edg e tr a ns l a t i
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i s tha t by bei ng ba s ed
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r a pi d, s c a l ea bl e a nd hi g hl y c
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l a bor a t i ve a ppr
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c hes to s ha r e da ta a nd k now l edg e i n a c
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bl e f a s hi
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the LH S i s the c a pa c i ty
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c
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i n u
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ea r ni ng , w i th ea c h sta k ehol der
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a t i n g a s a da ta pr
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der , da t a c
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a nd i n the end a s a l ea r ner ena bl i ng the pos s i bi l i ty f
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the c
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m pr
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di a g nos i s a nd tr ea tm ent. The LH S c a n i nc r ea s i ng l y a utom a te c ur r entl y l a bor i
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a nd t i m e c
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ng pr
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da ta sta nda r di z a t i
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, c hec k i ng , a na l y s i s , pr
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nc e, k now l edg e tr a ns l a t i
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a nd q ua li t y i m p r ovem ent. A t pr es ent, m a ny hi g hl y r el eva nt i ni t i a t i ves a nd pr
- j
ec ts a r e c
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r tm enta l i z ed i n i ni t i a t i ves s uc h a s BD 2K i n the U SA , P r ec i s i
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M edi c i ne a nd D ec i s i
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Suppor t. Thi s c
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er enc e a i m s to br i ng tog ether pr
- j
ec ts a c r
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Eur
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a nd the U SA i n l
- ok
i ng a t a c
- m m ona
l i ty
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pr
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em s , a ppr
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c hes a nd
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tuni t i e s r el eva nt to Lea r ni ng H ea l th Sy stem s . W e bel i eve tha t by s ha r i ng thes e c ha l l eng es i nter na t i
- n
all y w e c a n sta r t to bui l d a LH S tha t c a n a c hi eve g l
- ba
l s c a l e. Br enda n D el a ney D i pa k Ka l r a Res ea r c h i n A dva nc ed M edi c a l nf
- r
m a t i c s a nd Tel em a t i c s
Common challenges to the use of health data for person-centred care, and the reuse of health data for clinical research
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Interoperability Data security, privacy & ethics Scalability and sustainability Data quality and utility
There is a need to combine and sustain the results of European projects
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eHealth Stakeholders Group
and to form partnerships
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i~HD is registered in Belgium as a not-for-profit organisation It is being financed by membership fees, by providing services such as certification and governance and through specifically-funded projects and initiatives The European Institute for Innovation through Health Data (i~HD) has been formed as one of the key sustainable entities arising from the EHR4CR and SemanticHealthNet projects, in collaboration with several other European projects and initiatives supported by the European Commission
Guiding and catalysing the best, most efficient and trustworthy uses of health data and interoperability, for optimising health and knowledge discovery
i~HD has been formed because a complementary, neutral and not-for-profit organisation is needed
▪ to play a central role in governing and expanding a trustworthy health data-driven ecosystem including EHRs and clinical research platforms ▪ to promote the adoption of healthcare standards and of data quality, to enable more effective, safer and better integrated healthcare ▪ to act as a connector between health care and clinical research standards, that are presently developed in silos and impair the interoperability and pooling of health data for research ▪ to promote to society the importance of using health data for research, to improve efficiency through reduced duplications, delays, costs enhance speed and efficiency in clinical studies
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Harmonised health information and standards Solutions for better quality health data, and legitimate uses of data Quality assessments, certification and audit Value Assessment programmes Clinical Research needs Healthcare needs Best practices in information governance Intelligence derived from health data e.g. research, outcomes
Agenda
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