electronic solutions to clinical problems: an integrated approach to clinical data collection and...
DESCRIPTION
Presentation given by Alexis Joannides at a Mobile Data Collection seminar at the London School of Hygiene & Tropical Medicine on Sept 27, 2013TRANSCRIPT
Electronic solu-ons to clinical problems? An integrated approach to clinical data collec0on and analysis
Alexis Joannides Michael Gifford
Email: [email protected]
The challenge of clinical data flow
Clinical audit
Service evalua-on
Registry submission
Transfer documenta-on
Research study
Data capture
Service devolution across multiple sites across multiple specialties
Data duplication
operational service audit and evaluation academic research
Technical challenges
system compatibility data compatibility cost
Commissioning
Cost Inaccuracy
Healthcare records
Audit and research data
X X
1/4/11 – 1/4/12 n = 5099
Real-‐-me monitoring of neurosurgical emergency prac-ce from opera-onal data
0%
25%
50%
75%
100%
Other
No involvement
Follow-‐up
Transfer
0
600
1200
1800
Approaches to mul--‐site healthcare data collec-on
User familiarity Single point of data capture
Limited by quality of local data
Individual interfacing requirements
Control over data quality Rapidly scalable and adaptable
User training
Local unit engagement
Factors to consider Scalability Portability Cost-effectiveness Adaptability User involvement
Outcome Registry, Interven-on and Opera-on Network (ORION) a na-onal plaTorm for integra-ng clinical data collec-on for mul-ple uses
Data input
Longitudinal analysis
Cross-‐sec-onal analysis
Interfacing
Cloud repository
Print output Electronic records
Trial protocol Disease registry!
Care pathway!Clinical review!
Desktop and tablet interface No local so8ware requirement Two-‐factor authen0ca0on Pa0ent-‐facing interface Data valida0on Controlled modular access Single common dataset PDF, CSV, graph output
Key features
• Cloud-‐based applicaCon allowing secure and controlled access to structured healthcare informaCon across mul-ple sites
• Custom applicaCon modules u-lising common dataset
• Flexible paCent idenCficaCon via mulCple unique idenCfiers
• In-‐built record duplicaCon safeguards
• OpCmisCc and/or pessimisCc concurrency checks to enable collaboraCve work • Email communicaCon to paCents / users
• AutomaCc PDF generaCon for output to other systems / prinCng
• Temporary local storage and synchronisaCon for offline data capture – Prepared entries via token code or pre-‐loading – DraQ mode for later online reconciliaCon
• Custom filters for real-‐Cme analysis and CSV export for external analysis
Reconciling data protec-on and analysis
Web
app
licat
ion
Dat
abas
e U
sers
Data input
On-screen view
Document generation
Data export
Validation
Metadata specification
Decryption
Identifier encryption
Storage Backup
Service Admin Analysis
Regulatory framework
Steering CommiVee
SoWware Development
Team
Network Administra-on
Team
Outcome Research
Consor-um
Applica-on support
Log and backup monitoring
Module development
Record administra-on
Pilots and module rollout
User administra-on Grants
Publica-ons
Annual reports
Engagement and publicity
Data Monitoring and Oversight CommiVee
Policies and procedures Technical and Security SpecificaCon SubscripCon Terms and CondiCons OperaConal Policy System Access and Data Policy Annual IG toolkit submissions
Society of British Neurological Surgeons British Neurotrauma Group British Skullbase Society
Current work
• Network referral system – neurosurgery and neurology (regional) • VesCbular schwannoma registry (naConal) • Major trauma rehabilitaCon (regional) • SBNS/BNTRC chronic subdural haematoma audit (naConal) • UK shunt registry (naConal) • Childrens Epilepsy Surgery Service (naConal) • NF2 outcome and QoL registry (regional) • Integrated neuro-‐oncology care pathway (regional) • Impaired consciousness clinical database (local) • Pituitary surgery outcome registry (naConal) • UK cranial reconstrucCon registry (naConal) • UK TSHoma database (local) • PSA community monitoring (local)
Develop
men
t Pilo
t Live
0
10
20
30
40
50
60
70
Pa-e
nts recruite
d
Speed of deployment UK na4onal chronic subdural haematoma audit recruitment
Preven-on
Acute care
Prognosis
Recovery
Long-‐term care
ABI
EducaCon Risk straCficaCon Early detecCon ResuscitaCon -‐ Major Trauma Centre MulCmodality bedside monitoring FuncConal neuroimaging Emergence from coma States of impaired consciousness Late sequelae -‐ hydrocephalus, epilepsy, demenCa RehabilitaCon -‐ physical, cogniCve, emoConal, behavioural Community re-‐integraCon Ongoing paCent and carer support AcCve surveillance -‐ UK shunt registry -‐ EHIG head injury database
DBI
NRS
eRP
CRIC
UKSR
DoS
Data synergy Piecing together a heterogeneous brain injury pathway
Mobile devices: pa-ent interac-on Presen4ng symptom pa>erns in neuro-‐oncology (EORTC QLQ-‐C30 / BN20)
0
20
40
60
80
100 0
20
40
60
80
100
0
20
40
60
80
100
n=154
Mobile devices: clinician interac-on Rehabilita4on complexity following major trauma
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Achieving sufficient resolu-on Trade-‐offs in developing complex datasets
• PracCcality – Who and when?
• UClity
– Does it jusCfy the required resources? – Can this be useful for mulCple purposes?
• Applicability
– To what proporCon of paCents will this apply?
• Accuracy – How correct is the data likely to be?
Content
Par--on
Structure
Flow
Collec-ng the right data Defining a minimum dataset for accurate outcome interpreta4on
Baseline Intervention Outcome
Stratification Disease stage Disease subtype
Co-morbidity
Procedure Complications Adjuncts
Co-treatment
CROMS Survival Imaging Molecular markers Biological assays
PROMS
Quality of life Disease specific
IdenCfy paCent subsets amenable to novel intervenCons
Con-nuous evalua-on of high resolu-on
datasets
Evaluate impact of newly established
approaches Monitor intervenCon effecCveness and
safety
Evidence-‐based healthcare policy and
service delivery
Healthcare provision Clinical research
U-lity beyond the UK healthcare se_ng?
• PotenCal applicaCons
– Cost-‐effecCve approach to capture large-‐scale observaConal data from rouCne pracCce – Outcome reporCng for long-‐term condiCons – Complex datasets for bespoke research studies
• Barriers to consider – Local infrastructure and setup – Route to delivery and implementaCon – PaCent idenCficaCon and cross-‐referencing – Funding model and sustainability