1. Supporting academic research
Perspectives on sourcing information in health and social care
Cynthia Fraser
Senior Information Specialist

2. Health Services Research Unit (HSRU) Research Programmes
Health Technology Assessment
surgical
diagnostic
pelvic floor dysfunction
nutrition
ophthalmology
methodological
Delivery of Care
health service organisation
delivery of health care services
quality of patient care

3. Health Services Research Unit (HSRU) Multidisciplinary Unit
Approximately 70 members of staff
Systematic reviewers
Trialists
Qualitative researchers
Statisticians
Programmers
Health economists
Information specialists
Clinicians
Support staff

4. Health Services Research Unit (HSRU) Types of Research
Evidence synthesis
NICE – one of the academic centres undertaking technology appraisals (3-6 months)
NIHR HTA programme – competitive tender ( months)
Primary research
Centre for Healthcare Randomised Trials (several years)
Qualitative (variable)

5. Information needs for evidence synthesis
Information specialist working as part of multidisciplinary team throughout the course of project
Provide information within several internal project timelines
Regular team meetings to evaluate progress
Comprehensive searches for studies for systematic review(s) following protocol parameters
More focused searches for data for economic modelling (and can have several iterations)
Document all search strategies in final report
Additional tasks – documenting outcome of publications retrieved for PRISMA flow diagram (selected for full text assessment, excluded with reasons, included) and reference management

6. Information needs for trials
Information Specialist not part of trial team
More focused searches to identify overview of evidence base - major reports of evidence syntheses and trials and reports of ongoing trials
Information provided at fixed time points – at funding submission, for monitoring and progress reports throughout duration of trial
Typically looking for only clinical effectiveness data
Save and retain strategies for updating searches through course of trial
No formal reporting

7. Surveillance mammography following treatment for primary breast cancer
Is there evidence that surveillance mammography improves survival? - systematic review of clinical effectiveness of different surveillance regimens
How good is surveillance mammography in detecting breast cancer? - systematic review of diagnostic accuracy of mammography and comparator tests
Identify current UK practice - survey of UK breast surgeons on current surveillance regimens
How frequently and for how long? - evaluate risk profiles for recurrence (location, size, timing) by statistical modelling of data from UK breast cancer registries
What regimen is most cost - effective? – economic modelling

8. Searching timelines Aug 2007
Scoping - evidence syntheses; major primary studies; clinical guidelines; economic evaluations; ongoing research
Tender submission
May – June 2008
Background – clinical summaries; evidence syntheses; guidelines; clinical pathways; registries; clinician surveys
Project starts
July 2008
Diagnostic test accuracy (DTA)
Systematic review of DTA
Nov 2008
Clinical effectiveness of mammography surveillance (RCTS and cohorts)
Systematic review of clinical effectiveness
Jan 2009
Treatment guidelines; RCTS of treatment for recurrence or second cancers
Information for economic model
Feb 2009
Rate of tumour growth (doubling time)
Quality of life values for breast cancer patients
Data for economic model
April 2009
Update DTA
DTA systematic review
May 2009
Prediction models of recurrence; risk factors - time to recurrence, size of tumour
Data to inform statistical model
June 2009
Update clinical effectiveness
Effectiveness review
June-Dec 2009
Specific costs
March 2010
Citations and bibliography
Report submission

9. Information sources
Major bibliographic databases – MEDLINE, EMBASE, SCI, Biosis, Cancerlit, Scopus in Press (CINAHL, PsycINFO, ASSIA)
Evidence Syntheses - CDSR, DARE, HTA Database, MEDION (PROSPERO)
Trials – CENTRAL, Clinical Trials.gov, ICTRP, (EU-CTR), Clinical Study Results
Guidelines – NICE, SIGN, Professional organisations
Economics – NHS EED, RePeC, CEA Registry, ISPOR
Statistics – ISD, NHS Reference Costs, SEER, Cancer Research UK
Conference abstracts – SCI, Biosis, EMBASE, Conference proceedings Citation Indexes, Journal supplements, Professional organisations

10. Major bibliographic databases
Scoping
Background
DTA Review
Effectiveness Review
Statistical model
Economic model
Type of search
Focused: trials, surveys, guidelines
Focused:
clinical surveys, registries, guidelines
Highly sensitive :
DTA studies
Highly sensitive: RCTs, cohort
Specific: prediction models, time to recurrence
Specific: treatment guidelines,trials of treatment, doubling time, quality of life
MEDLINE x
EMBASE
SCI
Biosis
Cancerlit
Scopus (in press)

11. (treatment for recurrence) (incidence prevalence)
Additional sources
Database
Scoping
Background
DTA Review
Effectiveness Review
Statistical model
Economic model
Evidence syntheses x
Trials X
(treatment for recurrence)
Guidelines
(clinical
mgmt)
(clinical mgmt)
Economic
Statistical
(incidence prevalence)

12. Sources of evidence syntheses
Cochrane Database of Systematic Reviews (CDSR)
Database of Abstracts of Effects (DARE)
HTA Database
HTA organisations websites
MEDION – database of DTA systematic reviews
PROSPERO - prospectively registered systematic reviews in health and social care

13. Sources for trials
Cochrane Central Register of Controlled Trial (CENTRAL)
Clinical Trials.gov – US National Institutes of Health
EU Clinical Trials Register (EU-CTR) – European Medicines Agency
International Clinical Trials Registry Platform (ICTRP) – WHO portal of national and international trial registers (Clinical Trials.gov, ISRCTN, EU-CTR ++)
Early Breast Cancer Trialists Collaborative Group (EBCTCG)

14. Sources for clinical guidelines & care pathways
NICE
SIGN
NHS Evidence
AHRQ National Guideline Clearinghouse
Royal College of Radiologists
British Association of Surgical Oncology
American Society of Clinical Oncology
National Comprehensive Cancer Network (US)
Breast Cancer Surveillance Consortium (US)
National Breast and Ovarian Cancer Network (Aus)

15. Sources for economic information
NHS Economic Evaluation Database (NHS EED)
Cost- Effectiveness Analysis Registry (CEA) – CEVR at Tufts Medical Center
IDEAS(RePeC) – working papers
International Society for Pharmacoeconomics and Outcomes Research (ISPOR) - conferences “Value in Health” publishes abstracts
NICE costing templates
NHS reference costs – unit costs for procedures and services
ISD Scotland Cost Book
Unit Costs of Health & Social Care – PSSRU
British National Formulary – cost of drugs

16. Sources for statistics
Cancer Research UK- prevalence, incidence
Surveillance Epidemiology & End Results (SEER) – US National Cancer Institute - incidence, survival
NHS Information Centre - Hospital Episodes Statistics
Government Actuary’s Department - interim life tables, population projections
Public Health Observatories – selected public health topics
Professional and patient organisations and charities

17. Summary
Diverse range of information resources used to support information needs
Evidence syntheses requires variety of approaches to literature searching
- highly sensitive for reviews using variety of major
bibliographic databases
- specific for modelling but may need to widen to find suitable
data with reliance on specialised sources for statistics and
economic data
Support for trials much more limited
- scoping on a few key sources with periodic update