Electronic	
  solu-ons	
  to	
  clinical	
  problems?	
  
An	
  integrated	
  approach	
  to	
  clinical	
  data	
  collec...
The	
  challenge	
  of	
  clinical	
  data	
  flow	
  
Clinical	
  
audit	
  
Service	
  
evalua-on	
  
Registry	
  
submis...
1/4/11 – 1/4/12
n = 5099
Real-­‐-me	
  monitoring	
  of	
  neurosurgical	
  emergency	
  prac-ce	
  from	
  opera-onal	
  ...
Approaches	
  to	
  mul--­‐site	
  healthcare	
  data	
  collec-on	
  
User	
  familiarity	
  
Single	
  point	
  of	
  da...
Outcome	
  Registry,	
  Interven-on	
  and	
  Opera-on	
  Network	
  (ORION)	
  
a	
  na-onal	
  plaTorm	
  for	
  integra...
Key	
  features	
  
•  Cloud-­‐based	
  applicaCon	
  allowing	
  secure	
  and	
  controlled	
  access	
  to	
  structure...
Reconciling	
  data	
  protec-on	
  and	
  analysis	
  
WebapplicationDatabaseUsers
Data
input
On-screen
view
Document
gen...
Regulatory	
  framework	
  
Steering	
  
CommiVee	
  
SoWware	
  
Development	
  
Team	
  
Network	
  
Administra-on	
  
T...
Current	
  work	
  
	
  
•  Network	
  referral	
  system	
  –	
  neurosurgery	
  and	
  neurology	
  (regional)	
  
•  Ve...
0	
  
10	
  
20	
  
30	
  
40	
  
50	
  
60	
  
70	
  
Pa-ents	
  recruited	
  
Speed	
  of	
  deployment	
  
UK	
  na4ona...
Preven-on	
  
Acute	
  care	
  
Prognosis	
  
Recovery	
  
Long-­‐term	
  care	
  
ABI	
  
EducaCon	
  
Risk	
  straCficaCo...
Mobile	
  devices:	
  pa-ent	
  interac-on	
  
Presen4ng	
  symptom	
  pa>erns	
  in	
  neuro-­‐oncology	
  (EORTC	
  QLQ-...
Mobile	
  devices:	
  clinician	
  interac-on	
  
Rehabilita4on	
  complexity	
  following	
  major	
  trauma	
  
!"
#$"
$...
Achieving	
  sufficient	
  resolu-on	
  
Trade-­‐offs	
  in	
  developing	
  complex	
  datasets	
  
•  PracCcality	
  
–  Wh...
Collec-ng	
  the	
  right	
  data	
  
Defining	
  a	
  minimum	
  dataset	
  for	
  accurate	
  outcome	
  interpreta4on	
 ...
IdenCfy	
  paCent	
  
subsets	
  amenable	
  to	
  
novel	
  intervenCons	
  
Con-nuous	
  evalua-on	
  
of	
  high	
  res...
U-lity	
  beyond	
  the	
  UK	
  healthcare	
  se_ng?	
  	
  
	
  
•  PotenCal	
  applicaCons	
  
–  Cost-­‐effecCve	
  app...
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Electronic solutions to clinical problems: An integrated approach to clinical data collection and analysis

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Presentation given by Alexis Joannides at a Mobile Data Collection seminar at the London School of Hygiene & Tropical Medicine on Sept 27, 2013

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Electronic solutions to clinical problems: An integrated approach to clinical data collection and analysis

  1. 1. Electronic  solu-ons  to  clinical  problems?   An  integrated  approach  to  clinical  data  collec0on  and  analysis   Alexis Joannides Michael Gifford Email:  aj238@cam.ac.uk  
  2. 2. 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  
  3. 3. 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  
  4. 4. 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
  5. 5. 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    
  6. 6. 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    
  7. 7. Reconciling  data  protec-on  and  analysis   WebapplicationDatabaseUsers Data input On-screen view Document generation Data export Validation Metadata specification Decryption Identifier encryption StorageBackup ServiceAdmin Analysis
  8. 8. 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
  9. 9. 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)      Development                                Pilot                                                            Live    
  10. 10. 0   10   20   30   40   50   60   70   Pa-ents  recruited   Speed  of  deployment   UK  na4onal  chronic  subdural  haematoma  audit  recruitment  
  11. 11. 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  
  12. 12. 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  
  13. 13. Mobile  devices:  clinician  interac-on   Rehabilita4on  complexity  following  major  trauma   !" #$" $!" %$" &!!" ' ()*+,-" .,/(" 01/2*34" 56(/,78" 9:1*7; (3<" !"#$#%&"'$(%)*"+,$-." /0123"'$(%)*+" !" #!" $!" %!" &!" !'&" (')" #!'#&" #('$(" !"#$%&'()*+,&"-&.$/+'#0& !"#$%&12345!&06",+& !" #" $!" $#" %!" %#" &'(" )*+" ,'-" ./-" ,'0" &1(" &120" !"#$%&#'()*+,-'./0$#' 3415/6*(7" 89*-'/0" :1-;5(<" ='-*" ,*>5?'2" n=69  
  14. 14. 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  
  15. 15. 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
  16. 16. 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  
  17. 17. 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    

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