a framework for clinical e-science
DESCRIPTION
A Framework for Clinical e-Science. Welcome to our Industrial Steering Group Partners. Today’s Meeting. Get to know each other Tell you something about CLEF Start to find out How we can best work together What you would find of most value What you have that would help us - PowerPoint PPT PresentationTRANSCRIPT
A Framework for A Framework for Clinical e-ScienceClinical e-Science
Welcome to our Industrial Steering Group Partners
Today’s MeetingToday’s Meeting
• Get to know each other• Tell you something about CLEF• Start to find out
– How we can best work together – What you would find of most value– What you have that would help us– Who else we should be talking to
Project ParticipantsProject Participants
University of Sheffield
University College London
University of Brighton
Judge Institute
Royal Marsden NHS Trust
University of Manchester
Industrial Steering GroupIndustrial Steering Group
Who is CLEF ?Who is CLEF ?
Why is CLEF needed ?Why is CLEF needed ?What is CLEF ?What is CLEF ?
A Convergence of NeedA Convergence of Need
Post genomic research Need for more Need for more
and better and better clinical clinical
informationinformation
Clinical Practice, Audit &
Governance
Management& Policy
Evidence based
health care
Clinical trials recruitment
Problems with Accessing Problems with Accessing Clinical information ?Clinical information ?
Medicolegal, ethical and practical barriers
prevent large scale data sharing between
institutions
STOP STOP
STOP STOP
Much useful clinical information is still only in free text (clinic letters) that computers can’t read
Date-ordered view of record is too comprehensive and only records what happened, not why
UNION SELECT COUNT Patient_ID FROM Patients, Narrative, Diagnosis, Intervention WHERE ((Patients.Patient_ID=Narrative.Patient_ID AND Patients.Patient_ID=Diagnosis.Patient_ID AND Patients.Patient_ID=Intervention.Patient_ID) AND (Diagnosis.Name=“cancer” AND Diagnosis.Locus=“head of the pancreas” AND Intervention.Name= NOT “pancreaticduodenectomy”)AND (Patients.YearOfDeath BETWEEN Diagnosis.Year AND Diagnosis.Year+5)GROUP BY Patients.Date_of_death
SetA.Def {All unique patient& experience[[event.surgery:pancreaticoduodenectomy
treats[event.problem:cancer hasLocus[head of pancreas]]]& timedAt[time_point starts[time_interval:more than 5 years endedBy[time_point
timeOf[now]]]]]}SetB.Def {SetA
& experience[event.intervention.drug administration hasDrug[gemcitabine]& NOT timedAt[(time_point similarTimeAs[time_point
timeOf[event.intervention.drug administration hasDrug[chemotherapy drug]])]& occursBefore[time_point timeOf[event.intervention.drug administration hasDrug[gemcitabine]
occursJustBefore [time_point timeOf [event.intervention.Radiotherapy]]]}SetC.Def {SetA minus SetB} SetD.Def {SetB
& experience[event.problem:death & timedAt[time_point starts[time_interval:less than 5 years
& endedBy[time_ point timeOf[event.surgery:pancreaticoduodenectomy treats[event.problem:cancer hasLocus[head of pancreas]]]]}
SetE.Def {SetC& experience[event.problem:death
& timedAt[time_point starts[time_interval:less than 5 years & endedBy[time_ point timeOf[event.surgery:pancreaticoduodenectomy
treats[event.problem:cancer hasLocus[head of pancreas]]]]}Query.Def {(Size(SetB) - Size(SetD)) / Size(SetB)} Query.Def {(Size(SetC) - Size(SetE)) / Size(SetC)}
UNION SELECT COUNT Patient_ID FROM Patients, Narrative, Diagnosis, Intervention WHERE ((Patients.Patient_ID=Narrative.Patient_IDAND Patients.Patient_ID=Diagnosis.Patient_ID AND Patients.Patient_ID= Intervention.Patient_ID) AND (Diagnosis.Name=“cancer” AND Diagnosis.Locus=“head of the pancreas” AND Intervention.Name=“pancreaticduodenectomy”) AND (Patients.YearOfDeath BETWEEN Diagnosis.Year AND Diagnosis.Year+5) GROUP BY Patients.Date_of_death)
Query interfaces for interrogating
databases about temporal relationships
are complex
‘Huge variations in cancer care’BBC News 22nd May 2003
Why start with Why start with cancer ?cancer ?Major priority for NHS and Research
High public interest and concern
Clinical care and gene research strongly linked in cancer
Cancer patient EPR is information rich>100 letters per patient over lifetime
‘Breast cancer at
record levels’
BBC News 2nd June 2003
‘Wheat may prevent
colon cancer’
BBC News 23 rd February 2002
‘Vitamin cocktail cuts cancer deaths’BBC News 4th August 2003‘Vitamin D boosts
cancer treatment’
BBC News 14th June 2003
‘Direct-to-Consumer Marketing of
Genetic Tests for Cancer: Buyer
Beware’Journal of Clinical Oncology 21st July 2003
‘Gene to halt ovarian
cancer found’
New Scientist 23rd June 2003
‘Gene test may show if cancer will respond to chemotherapy’The Independent 1st August 2003‘Scientists stunned as
pioneering British research
cuts death rate by 30 per cent’
The Independent 1st June 2003
Who is CLEF ?Who is CLEF ?Why is CLEF needed ?Why is CLEF needed ?
What is CLEF ?What is CLEF ?
CLEF’s GoalsCLEF’s Goals
GRID
GRID
• Collect clinical information from multiple sitesCollect clinical information from multiple sites
• Analyse, structure and integrate itAnalyse, structure and integrate it
• Make it available using GRID tools (e.g. Make it available using GRID tools (e.g. mymyGrid)Grid)
• To authorised clinicians and e-Health scientistsTo authorised clinicians and e-Health scientists
• In a secure and ethical collaborative frameworkIn a secure and ethical collaborative framework
Ethical oversight committee
ReidentifyBy Hospital
PseudonymiseIn Hospital
Depersonalise
ExtractInformation
Integrate &Aggregate
Construct‘Chronicle’
Chronicle
Ethical oversightcommittee
Obvious patient names & identifiers masked by source hospital
PseudonymisedRepository
Hazardmonitoring
Knowledgeenrichment
Summarise& Formulate
Queries
Significant clinical information identified in text (e.g. diagnoses, drugs, clinical findings etc)…
Less obvious identifiers removed from text (e.g. occupation)
…and integrated with structured information (e.g. lab tests, theatre records)…
…and federated in a single secure data
repository
Individual Summaries& Queries
PrivacyEnhancementTechnologies
References reconstructed between information (e.g. Problem X was discovered during Investigation Y)…
…and ‘Chronicle’ view added to repository
Clinicians from original hospital can view summaries and query the repository…
…and reidentify specific patients, only with permission
Hospital exports its electronic records of regular clinical practice
Information extraction informed by data
already in repository
Clinical e-Scientists connected by Grid…query the repository
for e.g. numbers of patients with specific diseases.
…but answers are monitored to prevent
reidentification of patients by cross reference or data
mining.
Researchers reqired to notify possible reidentification risks
…and also contribute additional information (e.g. adding never stated diagnosis of anaemia if blood results suggest it)
All interactions between e-Scientists and repository approved and monitored
by ethical oversight committee.
ArchitectureArchitectureOutline Outline
ReidentifyBy Hospital
PseudonymiseIn Hospital
Depersonalise
ExtractInformation
Integrate &Aggregate
Construct‘Chronicle’
Chronicle
Ethical oversightcommittee
PseudonymisedRepository
Hazardmonitoring
Knowledgeenrichment
Summarise& Formulate
Queries
Individual Summaries& Queries
PrivacyEnhancementTechnologies
ReidentifyBy Hospital
PseudonymiseIn Hospital
Depersonalise
ExtractInformation
Integrate &Aggregate
Construct‘Chronicle’
Chronicle
Ethical oversightcommittee
PseudonymisedRepository
Hazardmonitoring
Knowledgeenrichment
Summarise& Formulate
Queries
Individual Summaries& Queries
PrivacyEnhancementTechnologies
ArchitectureArchitectureOutline Outline
Data Acquisition Cycle
Data Access Cycle
CLEF Data CycleCLEF Data Cycle
Data AcquisitionData Acquisition
ROYAL MARSDEN NHS TRUST - PATIENT CASE NOTE 324A621F:MRS Dorothy Smith
DOB: 12/05/44 21, Park Crescent
Basingstoke B12 Q13 16 Dec 1992 Seen in General Surgical This lady who has had a mastectomy and left open capsulotomy and removal of her prosthesis was seen by me in the clinic today on behalf of Mr Peterson. She has extensive bony lymphoedema in her left arm which does not seem to be getting any better although she is more or less reconciled to the problem. The original problem was that she complained of shooting pain in the direction of ulna nerve and although there does not seem to be any evidence of local, regional or distant recurrence the pain itself warrants management in a pain clinic. Mrs Smith could be seen in the pain clinic at the Marsden but as this would involve a lot of travelling would like to be treated nearer her home. I wonder whether it would be possible for you to investigate if there is a pain clinic available at Basingstoke as I am sure Dotty could be treated and benefit from its management. I have otherwise arranged for her to be seen in the clinic again in a year's time. There are no signs of recurrence at this time.
Mr Thomas Partridge
Reports dictated Reports dictated For hospital use: For hospital use:
ROYAL MARSDEN NHS TRUST - PATIENT CASE NOTE 324A621F:MRS Dorothy Smith
DOB: 12/05/44 21, Park Crescent
Basingstoke B12 Q13 16 Dec 1992 Seen in General Surgical This lady who has had a mastectomy and left open capsulotomy and removal of her prosthesis was seen by me in the clinic today on behalf of Mr Peterson. She has extensive bony lymphoedema in her left arm which does not seem to be getting any better although she is more or less reconciled to the problem. The original problem was that she complained of shooting pain in the direction of ulna nerve and although there does not seem to be any evidence of local, regional or distant recurrence the pain itself warrants management in a pain clinic. Mrs Smith could be seen in the pain clinic at the Marsden but as this would involve a lot of travelling would like to be treated nearer her home. I wonder whether it would be possible for you to investigate if there is a pain clinic available at Basingstoke as I am sure Dotty could be treated and benefit from its management. I have otherwise arranged for her to be seen in the clinic again in a year's time. There are no signs of recurrence at this time.
Mr Thomas Partridge
Pseudonymisation Pseudonymisation at hospitalat hospital
Carer pseudonymised
Clinic date blurredpreserving sequence
Mrs SmithXXXXXXXXX
324A621F:MRS Dorothy Smith
21, Park CrescentBasingstoke B12 Q13
########:######### ####### Obvious mentions of patient name
ROYAL MARSDEN##### #######
MarsdenXXXXXXX
BasingstokeXXXXXXXXXXX
CLEF-RMH-Entry-Key: 52A4F6DB2B46E
or hospital name removed
Overt identifying information removed in hospital & ID replaced by CLEF Entry Key
Mr Thomas Partridge
16 Dec 1992
5213A4F612F1
AB 1992
12/05/441944
Date of birth reduced to year
Depersonalisation Depersonalisation by CLEF Language by CLEF Language Technology…Technology…
Non-obvious identifyinginformation removedusing languagetechnology
##### ####### NHS TRUST - PATIENT CASE NOTE ########:######### ####### DOB: 1944 CLEF-RMH-Entry-Key: 52A4F6DB2B46E
AB 1992 Seen in General Surgical This lady who has had a mastectomy and left open capsulotomy and removal of her prosthesis was seen by me in the clinic today on behalf of Mr Peterson. She has extensive bony lymphoedema in her left arm which does not seem to be getting any better although she is more or less reconciled to the problem. The original problem was that she complained of shooting pain in the direction of ulna nerve and although there does not seem to be any evidence of local, regional or distant recurrence the pain itself warrants management in a pain clinic. XXXXXXXXX could be seen in the pain clinic at the XXXXXXX but as this would involve a lot of travelling would like to be treated nearer her home. I wonder whether it would be possible for you to investigate if there is a pain clinic available at XXXXXXXXXXX as I am sure Dotty could be treated and benefit from its management. I have otherwise arranged for her to be seen in the clinic again in a year's time. There are no signs of recurrence at this time.
5213A4F612F1
Nick-name “Dotty”spotted by language software & removedXXXXX
XXXXXXXXXXX
Carer name spotted & pseudonymised
##### ####### NHS TRUST - PATIENT CASE NOTE ########:######### ####### DOB: 1944 CLEF-RMH-Entry-Key: 52A4F6DB2B46E
AB 1992 Seen in General Surgical This lady who has had a mastectomy and left open capsulotomy and removal of her prosthesis was seen by me in the clinic today on behalf of XXXXXXXXXXX. She has extensive bony lymphoedema in her left arm which does not seem to be getting any better although she is more or less reconciled to the problem. The original problem was that she complained of shooting pain in the direction of ulna nerve and although there does not seem to be any evidence of local, regional or distant recurrence the pain itself warrants management in a pain clinic. XXXXXXXXX could be seen in the pain clinic at the XXXXXXX but as this would involve a lot of travelling would like to be treated nearer her home. I wonder whether it would be possible for you to investigate if there is a pain clinic available at XXXXXXXXXXX as I am sure XXXXX could be treated and benefit from its management. I have otherwise arranged for her to be seen in the clinic again in a year's time. There are no signs of recurrence at this time.
5213A4F612F1
Extraction of keyExtraction of keyinformation from textinformation from text
Information Extraction identifies events and relationships between them from the text, based on templates & knowledge resources
recurrence
no signs of recurrence
bony lymphoedema
shooting pain in thedirection of ulna nerve
pain
Interventions
Problems
Problem Site
Locations
left arm
local, regional or distant
a year’s time
today
at this time
Time
pain clinic
clinic
pain clinic
General Surgical
pain clinic
mastectomy left open capsulotomyremoval of her prosthesis
management
management
Extraction of keyExtraction of keyinformation into Data information into Data StructureStructure
Extracted information collected…
Interventions
Problems
Problem Site
Locations
Time
recurrence
no signs of recurrence
bony lymphoedema
shooting pain in thedirection of ulna nerve
pain
left arm
local, regional or distant
a year’s time
today
at this time
pain clinic
clinic
pain clinic
General Surgical
pain clinic
mastectomy left open capsulotomyremoval of her prosthesis
management
management
recurrence
no signs of recurrence
bony lymphoedema
shooting pain in thedirection of ulna nerve
pain
left arm
local, regional or distant
a year’s time
today
at this time
pain clinic
clinic
pain clinic
General Surgical
pain clinic
mastectomyleft open capsulotomy
removal of her prosthesis
management
management
recurrence
no signs of recurrencebony lymphoedema
shooting pain in thedirection of ulna nerve
pain
left armlocal, regional or distant
a year’s timetoday
at this time
pain clinicclinic
pain clinicGeneral Surgical
pain clinic
mastectomy
left open capsulotomy
removal of her prosthesis
managementmanagement
across multiple documents
radiology, pathology and other narrative reports
Information from laboratory and pharmacy systems
Extraction of keyExtraction of keyinformation into Data information into Data StructureStructure
Information extraction also collates repeated reporting of same event
Interventions
Problems
Problem Site
Locations
Time
Provenance of information linked to original texts…
recurrenceno signs of recurrence
bony lymphoedema
shooting pain in thedirection of ulna nerve
pain
left armlocal, regional or distant
a year’s timetoday
at this time
pain clinicclinic
pain clinicGeneral Surgical
pain clinic
mastectomy
left open capsulotomy
removal of her prosthesis
managementmanagement
..including multiple source documents
management
pain clinic
The CLEFThe CLEFChronicleChronicle
Internal links between events added by information extraction:What happened & why ?What was done & why ?
Interventions
Problems
Problem Site
Locations
Time
recurrenceno signs of recurrence
bony lymphoedema
shooting pain in thedirection of ulna nerve
pain
left armlocal, regional or distant
a year’s timetoday
at this time
pain clinic
General Surgical
pain clinic
mastectomy
left open capsulotomy
removal of her prosthesis
management
pain clinic
mastectomy
caused_by
bony lymphoedemaevi
dence
Including the links to original texts, this is the CLEF Chronicle
CLEF-RMH-Entry-Key: 52A4F6DB2B46E Female 66 with radiation induced leukaemia since 1931 Onset age 63. Thirty three appointments to date. Problems: Aplastic anaemia, cataract, astheniaTx:imatinibMeds: unclear
Hospital EPREPR Drugs Refer Tools Help
Protocol 354Staging CT
BP
Haem Chem Immu Bact Xray ECG USS
12.10.20 Coryza: chest NAD: reassure13.10.20 URTI: wheezy: amoxycillin20.10.20 Anxiety: lump under arm: staging scan24.10.21 PEFR : 300 :10.11.21 PEFR : 400: CXR requested12.11.21 CXR Basal Consolidation: : erythromycin27.11.21 : Chest clear :07.03.30 Depression: recurrence: Paroxetine19.04.30 WCC OK01.06.31 : : rpt Rx paroxetine18.10.31 Pain L arm: : coproxamol03.03.31 Viral URTI: PEFR 350: salbutamol04.03.34 WCCAbnormal : :30.05.34 : BP, ECG NAD :
Results Letters ApptDrugs
Summarisation forSummarisation forPatient CarePatient Care
Very brief summaryof chronicle for recordheader and front sheet is available to source hospital …
can be incorporated within the hospital system
CLEF-RMH-Entry-Key: 52A4F6DB2B46E Female 66 with radiation induced leukaemia since 1931 Onset age 63. Thirty three appointments to date. Problems: Aplastic anaemia, cataract, astheniaTx:imatinibMeds: unclear
Summary for top of screen/page for allpatient interactions
Patient reidentifiable only by source hospital, with permission
CLEF-RMH-Entry-Key: 52A4F6DB2B46EMaria Sklodowska-Curie
CLEF Data CycleCLEF Data Cycle
Data AccessData Access
CLEF e-Scientist LOGINLogin Query OMIM Exit
User ID:Password:
Users of this site are bound byCLEF Privacy PolicyCLEF Security PolicyData Protection ActMedical Records Act
Use is monitored by the CLEFEthics oversight board.
Access for e-Access for e-Scientists Scientists
Cumulative repository is made accessible for remote querying by e-Scientists…
******************
IdentityConfirmed
Possible physical identification of users by biometric readers or smartcard
Digital certificates issued per session
…under control of oversight committee.
Once user is authenticated, level of access authority is retrieved from oversight committee.
CLEF User IDCL-00236F
AuthorisationLEVEL 2
CLEF WYSIWYM Query Writer – L2Login Query OMIM Exit
Relevant Subjects
Treatment Profiles
Outcome Measures
Patients with [this type of tumour] at [this site]
Percentage of patients in [this condition] after [this interval of time].
Patients who received [this type of treatment], compared with patients who received [this type of treatment].
AND [another characteristic].
E-Scientist E-Scientist formulates queriesformulates queries
e-Scientists construct queries using structured query writer
Percentage of patients [alive] after [1 year] and after [2 years] and after [5 years].
Patients who received [radiotherapy] [daily], compared with patients who received [radiotherapy] [every other day] and those who received [no radiotherapy].
carcinomacarcinoma-in-situsarcomaneuroma
nothing elsethis clinical stagethis gradethis genetic marker---------------------------this symptomhas had this treatmentthis complication
AND [this genetic marker].
Links out to other bioscience resources e.g. OMIM, PubMed, Gene Ontology
AND [BRCA1 (OMIM 113705)].Patients with [this type of carcinoma ] at [this site]adenocarcinoma
basal carcinomasquamous carcinomatransitional carcinoma
Patients with [adenocarcinoma] at [this site]bladderbloodbrainbreastcervixcolonendometriumkidneylarynxlunglymphnodeoesophagusovarypancreasprostaterectumskinstomachtestistongue
Patients with [adenocarcinoma] of [this laterality] of [this part] of [breast]
…or graphically
For all patients with adenocarcinoma of the breast, compare the survival at 1, 2 and 5 years for those patients who had daily radiotherapy, those who had radiotherapy on alternate days, and those who had no radiotherapy
Feedback TextQUERY RESULT1792 patients diagnosed with adenocarcinoma of the breast were found. 788 had radiotherapy daily, 513 had it on alternate days and 491 had no radiotherapy.
After 5 years, 20% (n=158) of patients who had a daily treatment were alive. After 5 years, 10% (n=49) who had alternate day treatment were alive. After 5 years, 5% (n=27) of the patients who had no treatment were alive.
Result of running query displayed as generated text…
Generated text confirms the nature of the query
Privacy EnhancementPrivacy Enhancement& authorisation& authorisation
Queries logged,threats to confidentiality monitored.
CLEF WYSIWYM Query WriterLogin Query OMIM Exit
Relevant Subjects
Treatment Profiles
Outcome Measures
[Male] patients with [adenocarcinoma] of of [this laterality] of [this part] of [breast]AND [age] at [diagnosis] was [less than 30].
Percentage of patients [alive] after [1 year] and after [2 years] and after [5 years].
Patients who received [radiotherapy] [daily], compared with patients who received [radiotherapy] [every other day] and those who received [no radiotherapy].
WARNINGLess than 20 male patients diagnosed with adenocarcinoma of the breast were found.
Further subanalysis on small groups increases the risk that a patient may be identifiable.
Your CLEF security authorisation does not permit your query to be processed.
Queries on small patient groups are blocked or the figures blurred.
malefemale
[Female] patients with [adenocarcinoma] of of [this laterality] of [this part] of [breast]
QUERY RESULT1792 patients diagnosed with adenocarcinoma of the breast were found. 788 had radiotherapy daily, 513 had it on alternate days and 491 had no radiotherapy.
After 5 years, 20% (n=158) of patients who had a daily treatment were alive. After 5 years, 10% (n=49) who had alternate day treatment were alive. After 5 years, 5% (n=27) of the patients who had no treatment were alive.
With special authorisation researchers may examine individual records in anonymised form.
CLEF Patient Chronicle Viewer – L2Exit
#12345678910111213141516171819202122232425262728293031
17
1974
Grade III infiltrating ductal carcinoma left breast
7/22 sampled nodes positive
Radical Mastectomy Left Breast
Insertion Left Breast Prosthesis
MEFUP Chemotherapy
1982/3
Recurrence Left supraclavicular nodes
Excision biopsy of nodes
Radiotherapy
1992
Replacement of Left Breast Prosthesis
Removal of replacement to left breast prosthesis
1994
Recurrence inside chest (confirmed biopsy)
VAC Chemotherapy aborted (toxicity)
Radiotherapy completed
L5/S1 degeneration
Left phrenic nerve paralysis
1996
Multiple pulmonary emboli
Post-radiation fibrosis left upper lung
Prior rib fractures
Frontal lobe ischaemic atrophy
Teflon injection vocal cord
1997
Recurrence in chest
Pleural effusions
VAC Chemotherapy 6 cycles
1998
Recurrence in chest
Radiotherapy
Normal Left Shoulder Xray
1999
No evidence of recurrence
Congestive cardiac failure
Died June 1999
19 75 19 80 19 85 19 90 19 95 20 00
D i edG rad e I I I i n fi l tr ati n g
d u c ta lc ar c i n om a l e f t b reas t
RR ecu rr e n ce
R R R
TAMOXIFEN ARIMIDEX
RA D IO
C H E M O
SSSSSS S S S SS SSS t ag in g C T
T 1N 3 cM 0
T 1 >N 3 cM 1
S tag e IIA S tag e I II c S tag e IV
N o d e sL iv erS p l ee nK id n e yB o n e
N o d e sL iv erS p l ee nK id n e yB o n e
T 1 >N 1 >M 0
Textual summary of CLEF Chronicle for patient #17
Graphical ‘time line’ view of CLEF
Chronicle
1975 1980 1985 1990 1995 2000
DiedGrade III infiltrating
ductal carcinoma left breast
RRecurrence
R R R
TAMOXIFEN ARIMIDEX
SSSSSSS S S SS SSStaging CT
NodesLiverSpleenKidneyBone
NodesLiverSpleenKidneyBone
T1>N1>M0
T1N3cM0
T1>N3cM1
>Stage IIA Stage IIIc Stage IV
RADIO
CHEMO
Data Summarisation &Data Summarisation &VisualisationVisualisation
Hazard Monitoring Hazard Monitoring
Automated anonymisation unlikely to be perfect.
Users can report possible hazards they encounter.
CLEF WYSIWYM Query WriterLogin Query OMIM Exit
Relevant Subjects
Treatment Profiles
Outcome Measures
[Female] patients with [adenocarcinoma] of of [this laterality] of [this part] of [breast]AND [age] at [diagnosis] was [less than 30].
Percentage of patients [alive] after [1 year] and after [2 years] and after [5 years].
Patients who received [radiotherapy] [daily], compared with patients who received [radiotherapy] [every other day] and those who received [no radiotherapy].
QUERY RESULT1792 patients diagnosed with adenocarcinoma of the breast were found. 788 had radiotherapy daily, 513 had it on alternate days and 491 had no radiotherapy.
After 5 years, 20% (n=158) of patients who had a daily treatment were alive. After 5 years, 10% (n=49) who had alternate day treatment were alive. After 5 years, 5% (n=27) of the patients who had no treatment were alive.
CLEF Patient Chronicle Viewer – L1Exit
#12345678910111213141516171819202122232425262728293031
17
Lab
Higher security authorisation, more detail visible…
ROYAL MARSDEN NHS TRUST - PATIENT CASE NOTE
########:######### #######DOB: 1944CLEF-RMH-Entry-Key: 52A4F6DB2B46E
AD 1997 Seen in Pain Clinic
Dear XXXXX,
Thankyou for referring XXXXXXXXX to me. I know her quite well, as she is captain of my local ladies’ golf team.
As you say, her tumour is responding satisfactorily at the moment to Arimidex. She does not complain of any severe symptoms now, except continuing lymphoedema of the arm.
I will see her again in 3 months time.
5213A4F612F4
Report Hazard
Knowledge Knowledge Enrichment Enrichment
Authorised users can also augment chronicle with additional information.
CLEF WYSIWYM Query WriterLogin Query OMIM Exit
Relevant Subjects
Treatment Profiles
Outcome Measures
[Female] patients with [adenocarcinoma] of of [this laterality] of [this part] of [breast]AND [age] at [diagnosis] was [less than 30].
Percentage of patients [alive] after [1 year] and after [2 years] and after [5 years].
Patients who received [radiotherapy] [daily], compared with patients who received [radiotherapy] [every other day] and those who received [no radiotherapy].
QUERY RESULT1792 patients diagnosed with adenocarcinoma of the breast were found. 788 had radiotherapy daily, 513 had it on alternate days and 491 had no radiotherapy.
After 5 years, 20% (n=158) of patients who had a daily treatment were alive. After 5 years, 10% (n=49) who had alternate day treatment were alive. After 5 years, 5% (n=27) of the patients who had no treatment were alive.
CLEF Patient Chronicle Viewer – L1Exit
#12345678910111213141516171819202122232425262728293031
17
Lab Report HazardLab
0 5 10 15 20
WCC
Hb
0 5 10 15 20
LFT
0 5 10 15 20
Period of clinical anaemia, not recorded in chronicle
+
+
+
+
CLEF Knowledge Editor – L1Exit
Hb
0 5 10 15 20
Evidence
Event:
Yes No Cancel
ID(5627) ID(5645) ID(5685)
anaemiaProblem Type: diagnosisDate: 6F to 9B
UMLS CUI:C0002871
NB. Research access to depersonalised narratives will be highly restricted
Knowledge ResourcesKnowledge Resources• Internal knowledge sources
– Clinical significance – what’s clinically obvious”• “only osteoporosis” “No bony metastases”• Leukopaenia possible cause to stop treatment• Tamoxifen is used in breast cancer
may cause menopausal symptoms sometimes treated with HRT
– Linguistic resources and corpora
• External knowledge sources– Pubmed, UMLS, other literature …– OMIM, GO, other databases…
• Standards– HL7, CEN EHR, NCICB CaCore, …
Links & Related projectsLinks & Related projects• Bioinformatics
– GO, GONG, MGED, EBI
• Post-genomic research & cancer– NCRI/NTRAC/NCTR/NCRN– BioBank
• NHS & Healthcare– Cancer Networks & National Programme
• International– NCICB, Mouse/Human Anatomy projects
• E-Science & Standards– myGrid, CO-ODE/HyOntUse, ESNW, DTI, Semantic
Web/Grid– HL7, CEN TC251, ISO TC215– Semantic Mining NoE in 6th Framework
DeliverablesDeliverables• Privacy policies and framework
– A steering group hopefully in collaboration with others
• Information extraction– Clinical information from semi-parallel texts from
parallel records
• EHR/Chronicle/Repository– Specification and demonstrator of integrated
populated
• Workbench and Language Generation– Demonstration useful and usable interface for clinical
bioscientist to access repository– Query methods for specification longitudinal chronicle
• E-Science Implementation– Technical– Knowledge, metadata standards
• Tools from CO-ODE, myGrid, E-Science
Project Plan from 20K ftProject Plan from 20K ft
Design Prototype Revise & Integrate
Year 1 Year 2 Year 3
Policy & ethics
Information flow
Internal links
External links
first joined up demonstration
Info Extraction /depersonalisation demo
WorkbenchPrototype
Repository/Chronicles architecture & simulation
Internal Knowledge resources
Basic Engineering & architecture
Robust Info Extraction /depersonalisation
Integrated Workbench &Privacy Enhancement
Populated integratedRepository/Chronicles
Links to external knowledge & standards
Integration, E-Science Web services
Demonstrator & Evaluation
Vision& Plan
Thank you for comingThank you for coming
www.clinical-escience.orgwww.clinical-escience.org
Empowering the e-ScientistEmpowering the e-Scientist
Removing barriers to data sharingRemoving barriers to data sharing
Enriching clinical knowledge basesEnriching clinical knowledge bases
2003- 20052003- 2005