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NHS IT AND HEALTH RESEARCH

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Title: NHS IT AND HEALTH RESEARCH


1
NHS IT AND HEALTH RESEARCH
2
Welcome
  • Professor Sir Alex Markham
  • RCP Chair and SRO

3
Schedule for the Day
  • 9.30am Introduction and Strategic Overview
  • (Professor Sir Alex Markham)
  • 10.15am Research Capability Programme Update
  • (Peter Knight)
  • 10.45am QAs
  • 11.00am Functional Scope (Rob Thwaites)
  • 11.30am Refreshment break
  • 11.50am Patient and Public Perspective (Tony
    Sargeant)
  • 12.15pm Envisaging the Technology (John
    Parkinson)
  • 12.45pm QAs
  • 1.00pm Lunch

4
Schedule for the Day (2)
  • 1.45pm Welcome Back
  • 1.50pm National Institute for Health Research
    Information Systems Programme (Professor
    Steve Walker)
  • 2.15pm Access to GP records (Nicola Perrin)
  • 2.45pm QAs
  • 3.00pm Refreshment break
  • 3.20pm OSCHR e-health (Professor Ian Diamond)
  • 3.50pm GP Extraction Service (Dave Roberts)
  • 4.15pm QAs
  • 4.30pm Close

5
Research Capability Programme
Introduction and Strategic Overview Alex
Markham Research Capability Programme - SRO
6
Research Capability Programme
  • Recent news
  • Ministry of Defence hard disc with 100,000
    servicemens detailed records disappears..
  • 722,000 DNA samples added to National Database
    which now covers 4million people.
  • 44,000 DNA samples identified at crime scenes

7
Research Capability Programme
  • High level overview
  • Enabling Phase, August 07-June 08
  • Implementation Phase, July 08-March 09 and beyond
  • Key Partnerships
  • Key Deliverables
  • Key Challenges

8
Background
  • Dec 2005 Chancellors commitment
  • Jan 2006 DH strategy Best Research for Best
    Health
  • July 2006 RD advisory group to NHS CFH
    established by UKCRC
  • June 2007 UKCRC RD advisory group report
  • August 2007 CRDB SUS working group report
  • August 2007 Research Capability Programme
    initiated
  • September 2007 Health Select Committee Report

9
Recent Reports discussing access to Personal
Information
  • Better Use of Personal Information
    Opportunities and Risks (2005),http//www2.cst.g
    ov.uk/cst/reports/files/personal-information/repor
    t.pdf
  • Personal Data for Public Good using Health
    Information in Medical Research (2006),
    http//www.acmedsci.ac.uk/images/project/Personal.
    pdf
  • UKCRC RD Advisory Group to Connecting for
    Health Report of Research Simulations (2007),
    http//www.ukcrc.org/pdf/CfH20report20June2007
    20full.pdf
  • Towards Consensus in the use of Electronic
    Patient Records for Research in General Practice
    (2008), the Wellcome Trust
  • The Health Informatics Review (2008),
    http//www.dh.gov.uk/en/Publicationsandstatistics/
    Publications and
  • The Data Sharing Review (2008),
    http//www.justice.gov.uk/docs/data-sharing-revie
    w.pdf.
  • Also, a variety of changes in relevant
    legislation

10
Enabling Phase
  • Has achieved
  • Appointment of Programme Chair (SRO) and Group
    Programme Director
  • Establishment of a Programme Board
  • An agreed phase 1 Programme Initiation Document
  • Agreed terms of reference for an External
    Reference Group operating under the aegis of the
    Office for Strategic Co-ordination of Health
    Research (OSCHR)
  • Engagement with stakeholders to create a common
    vision
  • Substantial progress on the recommendations
    identified in the UKCRC report
  • A defined scope of work for the Programme and for
    related initiatives
  • Production of a high level requirements
    documentations PD00 to PD20
  • An approved Strategic Outline Case
  • An agreed Programme Initiation Document for the
    Full Programme
  • Development of the genesis of an Outline Business
    Case
  • Completed an Office of Government Commerce
    Gateway 0 review

11
Weve delivered a total of 21 documents running
to about 800 pages!
  • These documents have been delivered via the
    following six work-streams
  • Technical Architecture
  • Functional Scope and Business Case
  • Data Quality, Standards and Linkage
  • Information Governance and Threat Assessment
  • Infrastructure
  • Communications and Stakeholder Engagement

12
RCP Data Sources?
  • Assessing feasibility of
  • Demographic Data (NHS patient index)
  • Vital events (births, deaths)
  • Primary care clinical records (GP system
    extracts, research collections)
  • Secondary care clinical records (Hospital system
    extracts, research collections)
  • NHS National Data Collections (HES/MHMDS)
  • NHS CRS National Systems (Summary Care Record,
    Choose and Book, Electronic Prescription Service)
  • Disease Registries (National and Regional)
  • Diagnostic data (Laboratory tests)
  • NHS Specialist Collections (Clinical Audit)
  • Other data collections (research datasets,
    education, social care, deprivation,
    socio-economic)

13
How were stakeholders engaged?
  • Representation on the External Reference Group
  • The External Reference Group has been established
    and has common membership with the OSCHR E-Health
    Research Board, as well as the same chair, in
    order to ensure coordination of activities. It
    includes representation from a wide range of
    stakeholders (academia, ABPI, BIA, NHS etc) as
    well as Patients/Public Reps and UK Devolved
    Administrations.
  • A public consultation
  • To test the findings and recommendations of the
    CRDB SUS working group report with professionals
    and patients and to probe public attitudes
    towards the use of medical information for
    research purposes. Ready in Feb 2008, launched
    September 2008.
  • Please RESPOND!!!
  • Series of Town Meetings, Spring 2008
  • Started with a massive team, but now up to 10
    staff

14
Research Capability ProgrammeBoard Membership
  • Professor Sir Alex Markham (Chair) University of
    Leeds
  • Professor Ian Diamond Economic and Social
    Research Council
  • Professor Michael Thick NHS Connecting for
    Health
  • Dr Louise Wood (Observer) Department of Health
  • Jeremy Thorp NHS Connecting for Health
  • Richard Jeavons NHS Connecting for Health / DH
  • Marc Taylor Department of Health
  • Peter Knight NHS Connecting for Health
  • Paula Whitty
    NE SHA Chief Information Officer

15
Research Capability Programme External Reference
Group Membership
  • Professor Ian Diamond ESRC
  • Dr Richard Barker ABPI
  • Rob Thwaites GSK
  • Dr Alan McDougall Astra Zeneca
  • Dr Charles Brigden Amgen
  • Dr David Roblin Pfizer Global RD
  • Dr Paul Cload GE Healthcare
  • Dr John Parkinson GPRD, MHRA
  • Professor Ronan Lyons HIRU
  • Professor Tony Avery University of Nottingham
  • Professor Frank Sullivan University of Dundee

Professor Rory Collins UK Biobank /
Oxford Professor Carol Dezateux ICH,
UCL Professor Paul Elliot Imperial
College Professor John G Williams University of
Swansea Dr Louise Wood NIHR Dr Tim
Hubbard Wellcome Trust Dr George
Sarna MRC Christine Vial Patient / Public
Member Tony Sargeant Patient / Public
Member Nick Partridge INVOLVE
16
(No Transcript)
17
RCP Implementation Phase
  • Strategic Outline Case
  • Outline Business Case
  • Output Based Specification 1
  • Output Based Specification 2
  • Full Business Case
  • Office of Government Commerce, Gateway Reviews
  • Financial Approval Processes CfH, Department of
    Health, HM Treasury
  • Pilot Studies
  • Procurement
  • Ongoing role for ERG/OSCHR E-Health Records
    Research Board
  • Funders Forum
  • Continuing engagement with the research community

18
RCP Key Partnerships
  • Established Players (in no particular order)
  • Other CfH Programmes
  • NIHR IT Programme
  • UK Biobank
  • Secondary Uses Service
  • The Information Centre for Health and Social Care
  • GP Research Database/MHRA
  • QResearch and other primary care datasets
  • GP Extraction Service (IC)
  • Office for National Statistics/Registrar General
  • Public Health Observatories
  • National Cancer Intelligence Network
  • Janet/N3 Forum
  • and many, many others.

19
RCP Key Partnerships
  • The Research Communities
  • Public Health Researchers
  • Observational Epidemiologists
  • Clinical Trialists
  • Health Services Researchers
  • Pharmacovigilantes ?

20
What challenges do we face?
  • Ensuring the opportunities are maximised
  • Developing better linkage between new and
    existing databases
  • Data quality and standards
  • Information Governance
  • Patient confidentiality
  • Access who, when, where, what, how, why
  • Pseudonymisation / anonymisation and
  • Patient consent and consent for consent.
  • Consolidating different stakeholder views e.g.
    professional vs patient groups or across
    different professional groups

21
xxxxxxxx
xxxxxxxxx
xxxxxxxxx
xxxxxxxx
22
RCP Key Challenges
  • Concepts that several colleagues in this area are
    addressing
  • Honest Brokers
  • Safe Havens
  • Trusted Third Parties
  • ..changing the terminology might help

23
RCP Key Challenges
  • INFORMATION GOVERNANCE
  • National Information Governance Board (NIGB)/PIAG
  • DH Information Policy Unit
  • Information Commissioner
  • General Medical Council
  • BMA/Medical Insurers
  • Caldicott Guardians
  • SHA Chief Information Officers
  • NHS CFH Information Governance Board
  • DH Information Director
  • Director, NPfIT
  • Chief Statistician etc, etc, etc
  • all set against a bewildering assortment of
    legislation.. and Parliamentary Statements as to
    what the laws are supposed to mean..and
    conflicting views as to how the Parliamentary
    Statements are then to be interpreted

24
Research Capability Programme Key Challenges
  • This is not going to be easy!!
  • Essential to maintain stakeholder support and
    momentum
  • Thank you for your support to date.
  • Credit Crunch, what Credit Crunch???

25
Research Capability Programme
  • Programme Update
  • Peter Knight
  • Group Programme Director

26
Guide to Acronyms
  • UKCRC United Kingdom Clinical Research
    Collaboration
  • CRDB Care Record Development Board
  • NIGB National Information Governance Board
  • NHS CRS NHS Care Records Service
  • SCR Summary Care Record
  • DCR Detailed Care Record
  • SUS Secondary Uses Service
  • RD Research and development

27
What is the Research Capability Programme?
  • It is a formal programme of work within NHS CFH
    looking at how information held in the National
    Programme for IT systems may be used for research
    purposes.
  • It will take forward the recommendations in the
    Report of Research Simulations produced by the
    UKCRC Advisory Group to NHS CFH.
  • It has a Senior Responsible Owner, who is a
    nominee of the DH Director-General of RD. A
    programme board and external reference group
    provide strong governance.
  • The primary objective is to enable research to
    achieve its full potential as a core activity
    for healthcare, alongside other uses of NHS data
    that lead to improvements in the quality and
    safety of care.

28
Programme Phases
  • Phase 1 Enabling phase Aug 07 June 08
  • Phase 2 Full programme Jul 08 onwards
  • Six stage programme
  • Phase 2 the Full Programme is well underway and
    has six stage to complete by March 2011 before
    the Programme is closed and the services are
    handed over to business as usual. There will be
    functionality operational in 2009 to the research
    community

29
Health Research Support Service
Study management interface receives request
for information required for the studies and
validates the request to confirm the scope
and nature of the data required
Cohort Management Function
Set of analytical tools for the researcher to
use on the study output
Data on cohort studies
Predefined processes for research approvals (inclu
ding scope, ethics, funding and agreement
to proceed)
Data sources NCRS, SUS, GPRD etc
Meta Data Services
Research process Start point
Study finishes and output plus report is
archived
Linkage Services
Linkage Mechanism
Anonymisation / Pseudonymisation Services
Anonymisation / Pseudonymisation mechanism
Study output stored as snapshot or raw data plus
query
Final output to the researcher
30
Delivered by six work-streams
  • Technical Architecture
  • Functional Scope and Business Case
  • Data Quality, Standards and Linkage
  • Information Governance and Threat Assessment
  • Infrastructure
  • Communications and Stakeholder Engagement

31
Version 0.3 11/09/08
32
Enabling Phase
  • Has achieved
  • Appointment of Programme Chair (SRO) and Group
    Programme Director
  • Establishment of a Programme Board
  • An agreed phase 1 Programme Initiation Document
  • Agreed terms of reference for an External
    Reference Group operating under the aegis of the
    Office for Strategic Co-ordination of Health
    Research (OSCHR)
  • Engagement with stakeholders to create a common
    vision
  • Substantial progress on the recommendations
    identified in the UKCRC report
  • A defined scope of work for the Programme and for
    related initiatives
  • Production of a high level requirements
    documentations PD00 to PD20
  • An approved Strategic Outline Case
  • An agreed Programme Initiation Document for the
    Full Programme
  • Development of the genesis of an Outline Business
    Case
  • Completed an Office of Government Commerce
    Gateway 0 review

33
Full Programme Stages
  • Implementation Programme
  • Stage 1 Procurement, Pilot and Proof of Concept
  • Stage 2 Mobilisation
  • Stage 3 Building the infrastructure
  • Stage 4 Federating data sources
  • Stage 5 Transfer to Business as usual
  • Stage 6 Programme closure and benefits
    realisation

34
RCP Full Programme Stage 1
  • The Programme structure
  • Business Cases and Procurement Project
  • Commissioning of the IG Services Programme
  • Pilot Programme
  • Public Consultation Project
  • Programme Communication
  • Programme Assurance

35
RCP Stage 1 activities Jun to Mar 09
Apr 09 approvals and mobilisation
36
More information
  • www.connectingforhealth.nhs.uk/systemsandservices/
    research
  • From there you will also find links to
  • The DH Strategy Best Research for Best Health
  • The report of the UKCRC Advisory Group to CFH
  • The report of the CRDB SUS Working Group
  • http//www.connectingforhealth.nhs.uk/susconsultat
    ion

37
  • Questions and Answers

38
Functional Scope What services will be
available to researchers through the Research
Capability Programme?
  • Rob Thwaites
  • External Reference Group to the Research
    Capability Programme
  • 29th October 2008

39
Functional scope those research capabilities
that the RCP aims to deliver
RCP will increase data available provide
services to support research and provide
services to reduce the need for identified data
In scope
Out of scope
Access to non-English NHS data Research
services Support for the detailed operation of
research studies
NPfIT data and systems Access to other healthcare
data Catalogues Linkage mechanisms Functions to
reduce need for identified data
  • Health Research Support Services (HRSS) the
    overall solution provided by the programme

40
Examples of services that are within the scope of
the RCP would include
Negotiating agreements with current data
custodians for existing databases to be made
available through the HRSS Developing new
linkages between a GP database and a secondary
care database such that the combined data can be
used for research Providing access to data
sources Providing regular reports from new
datasets built on systems being established
within the NPfIT Storing and archiving
data Verifying data Providing cohort management
services Anonymising or coding data Re-identifying
individuals from coded data
41
We expect the nature of data provision to be wide
and to vary
  • In detail
  • patient-level data/aggregate data
  • In mechanisms of access
  • interactive web services/remote database
    access/file transfer
  • In level of processing
  • raw data/linked data/formatted reports
  • In interactivity
  • real-time/batch processing
  • PD05 Section 3.4

42
Examples of services that fall outside the scope
of the RCP would include
Conducting research studies Recruiting
investigators or subjects for studies Providing
direct access to non-English data sources Further
develop existing managed data collections Inform
NHS best practice using the results of
research Provide adverse reaction surveillance
PD07 Section 2.2
43
As we move from design to build
Connecting for Health Research Capability
Programme
Datasets already available from NPfIT
RCP set up
First contracts with vendors of existing data
RCP design phase ends
RCP 3-year delivery phase begins
First honest broker service
1H08
2H08
44
future users, customers and stakeholders will be
able to provide input to the workstreams
Connecting for Health Research Capability
Programme
Datasets already available from NPfIT
RCP set up
First contracts with vendors of existing data
RCP design phase ends
RCP 3-year delivery phase begins
First honest broker service
1H08
2H08
Stakeholder input (egs)
External Ref Gp
External Ref Gp plus workstreams
45
The proposed capabilities are being designed now
through six work streams
RCP work streams
Areas of focus
Infrastructure
Honest broker(s) and business model, Safe havens
Functional scope
Services to be provided centrally business models
Data quality and standards
Data standards, terminologies, options for
linkage of datasets
Technical architecture
How data will be stored and accessed
Information Governance
Data security and measures to manage the threats,
patient consent
Communications and stakeholder engagement
Initial consultation exercise communications
with public/physicians and with research community
46
but these cannot be seen in isolation they
build upon what we have now and what is being
developed
Examples
Building on what we have now
Building on what is
coming through RCP elsewhere in CfH
other initiatives
Excellent primary care data
Honest broker
Information on prescriptions dispensed (ETP)
Standard costs for clinical trials
Infrastructure
Streamlined study approval processes
Some hospital data, eg HES
Imaging data (PACS)
Linkage and anonymisation services
Clinical Research Networks
Use of a unique patient identifier
Access to data sets
Governance on use of data
Catalogues and advice
47
Input from future users, customers and
stakeholders is key to ensuring the future
usefulness of the capabilities
Connecting for Health Research Capability
Programme
Datasets already available from NPfIT
RCP set up
First contracts with vendors of existing data
RCP design phase ends
RCP 3-year delivery phase begins
First honest broker service
1H08
2H08
Stakeholder input (egs)
External Ref Gp
External Ref Gp plus workstreams
Town Halls/web
Town Halls/web/other communication
Pilot projects
48
Moving forward as the RCP starts to deliver,
early pilot projects should dovetail with
emerging capabilities
Connecting for Health Research Capability
Programme
RCP set up External Ref Group convened
Datasets already available from NPfIT
First contracts with vendors of existing data
RCP design phase ends
RCP 3-year delivery phase begins
First honest broker service
1H08
2H08
Pilots (proof of concept)
Paediatric data resource pilot
Clozapine registry comparison
Others?
49
Developing a paediatric pharmacovigilance and
epidemiology data resource for the UK
  • We expect to see an increase in paediatric
    research in the future
  • but currently there are challenges to
    paediatric research and pharmacovigilance in the
    UK
  • There is an opportunity to build on existing
    data and skills in the UK, and the new
    capabilities from the CfH Research Capability
    Programme
  • We are keen to work with these and develop a
    Paediatric Data Initiative

50
Groups conducting clinical trials will be able to
start using the RCP capabilities as the programme
progresses
A future clinical study with CfH and related
research capabilities in place
GSK
51
with better approaches to trial design, planning
and recruitment as early possibilities
A future clinical study with CfH and related
research capabilities in place
Clinical Trial draft Protocol
augmented eHR
Final CT datasets
Electronic transfer of CT data
eProtocol
Patient data entered in eHR
Protocol assessment by sponsor
Identification of patients by clinic
Cleaning and verification of data by sponsor
Clinic Visit
GSK
52
The intent of the HRSS is to complement and
augment existing research and support services
Outside CfH Devt of existing data collections Res
earch and analysis services etc
  • CfH
  • Extend detailed health
  • records
  • etc

RCP Access to data Infrastructure Linkages etc.
PD07 Section 2.2
53
Some final observations
54
Patient and Public Perspective
  • Tony Sargeant
  • (link to presentation)

55
John Parkinson
  • 10 years University of Dundee,
  • MEMO,
  • Tayside Record Linkage System,
  • HIC

For past 3 years, Director of GPRD
For past 8 months- 50 seconded to RCP
56
Envisagingthe Technology
Nothing about Servers Hardware Software Types of
databases HL7 Xml Coding
57
BBC Micro 1984
Break
_at_
58
UK Marks out of ten cf ROW
  • Clinical trial system
  • Real world data

4/10 much improvement needed
7/10 still room for improvement A 10/10 is
possible
59
RCP
60
Who to speak with?
Does it really have quality?
You cant!
Who can give a decision?
Did you know about new EU reg xyz?
Where is that data?
Are there enough patients?
Anonymise this way?
How much ?
No that way?
Will we recruit?
Which Ethics system?
No you cant have data?
What about local approvals?
We are different, you need to do this?
61
R
P
It be done
CANT
62
The 3 principles in the search for medical TRUTH
  • 1. Compare like with like. The comparators have
    to be the same except for the one you are
    studying.
  • 2. The larger the group studied, the better and
    more reliable the result. -no single number
    rather a range of numbers confidence interval
  • 3. Bayes' theorem-The strength of all the
    supporting evidence related to that of a
    particular study

63
Relevance to RCP
Observationally- widest possible types of data
  • 1. Compare like with like. The comparators have
    to be the same except for the one you are
    studying.
  • 2. The larger the group studied, the better and
    more reliable the result. -no single number
    rather a range of numbers confidence interval
  • 3. Bayes' theorem-The strength of all the
    supporting evidence related to that of a
    particular study

Randomised CT
More reliable results
Multiple studies data and methodologies
64
OBSERVATIONAL
All Research needs
ALL demographic data
Rando In real world
ALL GP data
Clinical Trials
ALL Lab data
ALL Rx data
De-id
ALL other data
ALL Hospital data
R C P
ALL Disease Registry data
65
Schema of uses/users
PharmacoEPI Multi Giga users
Epi. Giga users
Other user Mega users
Aggregate data Kilo users
Regulators
Academics
NHS
Pharma
Biotech
Devices
Drug Safety
Outcomes/effectiveness
P. economics
Drug utilisation
Disease Epi.
P. genomics
HS Planning
HS Research
Risk Benefit
66
Technology- whats in, whats not
67
  • The only common identifiers found in Hospital xx
    Systems are the Hospital Unique ID and in
    addition in some Trusts, the NHS number.
  • The patient's name may be entered differently and
    there is no order or xx number that is exported
    from the xx system that might enable an
    alternative link to be made with other databases.
  • The Hospital Unique ID cannot, moreover, be used
    alone as the common identifier. This is because
    the same Hospital Unique ID numbering system will
    almost certainly be used by a different hospital
    with the same PAS system thereby creating
    duplicate IDs for different patients.
  • This is further compounded by in some cases the
    unique ID only being relevant to a single
    admission or episode.
  • This means that a patient may have different
    hospital unique IDs depending on which hospital
    they go to, and may even have different IDs
    within the same hospital for different
    admissions.

68
24
69
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70
FEDERATED
Data in
Data access
71
If it isnt brokeDont fix it
Nothing to fixRatherA new paradigm
72
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73
General Research needs
  • More data
  • Easier access than now
  • Simplified system for approvals
  • A common ontology

74
Primary Care
Secondary Care
Tertiary Care DR
Lab Care
NHS demographics
OOH, Walk-in Care
Day Care
Pharmacy Care
2o Admin Rx
1o Rx
Day care Admin Rx
75
Real World data
Mortality
Q Research 5
EMIS
100
20
THIN 3
Vision
Disease Analyser 2
DIN 1
Torex
GPRD 6
HES
CCAD
Cancer
TPP
80 not in above

Apollo
BT
Miquest
76
Primary Care
Secondary Care
Tertiary Care DR
Lab Care
Tertiary Care DR
Tertiary Care DR
Tertiary Care DR
Tertiary Care DR
Tertiary Care DR
NHS demographics
Tertiary Care DR
OOH, Walk-in Care
Day Care
Tertiary Care DR
Pharmacy Care
2o Admin Rx
1o Rx
Day care Admin Rx
77
Technologyfuture
78
Terra, Petta and Exa Bytes of data
GRID Technology
1,000,000,000,000,000,000
79
Size of GP data files
  • 20 years of historical all England GP data

30 Terrabytes
750,000 books
40km high stack of A4 paper
80
Care
?
81
Clinical trial technology
82
Clinical Trials
  • More of
  • And
  • e

83
RCP Clinical Trials
  • Phase 2
  • Phase 3
  • Phase 4
  • Randomise in every-day clinical care
  • Real World RCTs

84
Clinical Trials
  • The issues
  • Feasibility counts
  • Patients
  • Practices, doctors that recruit
  • Too expensive cf other countries
  • Failure to recruit
  • Slow recruitment

85
Clinical Trials
  • What can RCP offer
  • Automated Practice Recruitment

86
Real World CTs
Patient 4356RS COPD Could be randomised Trial
COPD antib.
87
Real World CTs
Patient 4356RS COPD Check sputum
88
Real World CTs
Patient 4356RS COPD Check sputum Non-purulent-CO
NSENT
89
Real World CTs
Patient 4356RS COPD CONSENTED Give C. leaflet
90
Real World CTs
Patient 4356RS COPD Hit F9 key to randomise
91
Real World CTs
Patient 4356RS COPD Arm A Rx antibiotic
92
Real World CTs
Patient 4356RS Rx Xyz 250 mgs b.d 20 caps
93
England wide phase 3 CT system
  • Query on central dataset using inclusion,
    exclusion requirements shows
  • N possible total patients
  • Range across practices
  • Re-run query against Primary care Research
    network
  • N possibles/ range
  • Re-run against latest high recruiters dataset
  • Decide which practices to invite
  • Auto-email onto desk of GP- if YES
  • List of patients follows (45)
  • Tick box if happy they can be recruited (37)
  • Letters will be sent out to 37 people on your
    behalf

94
England wide CT system
  • Letters sent out from central system using same
    methodology as pay slips- no one person knows
    who has what condition, /what the letter says.
  • Patient rings their doctor for recruitment
    consultation.

95
Collecting the data
  • ?fully within clinical system
  • ? Within clinical system special area
  • ? Web CT systems

96
Benefits
  • Rapid assessment of feasibility across 50
    million
  • Link with GP datasets about research interest and
    good recruiters
  • Early first in and to n required
  • Quicker result
  • Cost effective to run
  • So Pharma wants to do more trials/research in UK

97
(No Transcript)
98
Cross technology
  • CT to real world

99
From RCT to Real World
Off label
Elderly use
Paediatric use
Phase 3 Patients N5000
Co-morbidities
Co-treatments
100
Risk-benefit acceptability curves by age (5 year
HRT use)
population
50-59
60-69
70
40-49
Risks
Benefits
Cases/10,000 5yrs
101
(No Transcript)
102
Research Capability Programme RCP
Research Capability Programme
Questions
103
  • Questions and Answers

104
Welcome Back
  • Professor Sir Alex Markham

105
Schedule for the Day (2)
  • 1.45pm Welcome Back
  • 1.50pm National Institute for Health Research
    Information Systems Programme (Professor
    Steve Walker)
  • 2.15pm Access to GP records (Nicola Perrin)
  • 2.45pm QAs
  • 3.00pm Refreshment break
  • 3.20pm OSCHR e-health (Professor Ian Diamond)
  • 3.50pm GP Extraction Service (Dave Roberts)
  • 4.15pm QAs
  • 4.30pm Close

106
National Institute for Health Research Health
Information Systems Programme
  • Professor Steve Walker
  • National Institute for Health Research
  • (Link to presentation)

107
Access to GP Records
  • Nicola Perrin
  • Wellcome Trust
  • (link to presentation)

108
  • Questions and Answers

109
OSCHR e-health
  • Professor Ian Diamond
  • (link to presentation)

110
GP Extraction Servive
  • Dave Roberts
  • NHS Information Centre
  • (link to presentation)

111
  • Questions and Answers

112
  • Close
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