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

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

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

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 (12-18 months) Primary research Centre for Healthcare Randomised Trials (several years) Qualitative (variable)

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

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

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

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

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

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)

(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)

Sources of evidence syntheses Cochrane Database of Systematic Reviews (CDSR) Database of Abstracts of Effects (DARE) HTA Database http://www.crd.york.ac.uk/crdweb/ HTA organisations websites MEDION – database of DTA systematic reviews http://www.mediondatabase.nl/ PROSPERO - prospectively registered systematic reviews in health and social care http://www.crd.york.ac.uk/PROSPERO/

Sources for trials Cochrane Central Register of Controlled Trial (CENTRAL) http://www.thecochranelibrary.com/view/0/index.html Clinical Trials.gov – US National Institutes of Health http://clinicaltrials.gov/ct2/home EU Clinical Trials Register (EU-CTR) – European Medicines Agency https://www.clinicaltrialsregister.eu/ International Clinical Trials Registry Platform (ICTRP) – WHO portal of national and international trial registers (Clinical Trials.gov, ISRCTN, EU-CTR ++) http://apps.who.int/trialsearch/ Early Breast Cancer Trialists Collaborative Group (EBCTCG) http://www.ctsu.ox.ac.uk/research/meta-trials/ebctcg

Sources for clinical guidelines & care pathways NICE http://www.nice.org.uk/ SIGN http://www.sign.ac.uk/ NHS Evidence http://www.evidence.nhs.uk/topic/breast-cancer AHRQ National Guideline Clearinghouse http://guidelines.gov/index.aspx Royal College of Radiologists http://www.rcr.ac.uk/ British Association of Surgical Oncology http://www.baso.org/ American Society of Clinical Oncology http://www.asco.org/ National Comprehensive Cancer Network (US) http://www.nccn.org/ Breast Cancer Surveillance Consortium (US) http://breastscreening.cancer.gov/ National Breast and Ovarian Cancer Network (Aus) http://canceraustralia.gov.au/clinical-best-practice/breast-cancer/

Sources for economic information NHS Economic Evaluation Database (NHS EED) http://www.crd.york.ac.uk/crdweb/AboutNHSEED.asp Cost- Effectiveness Analysis Registry (CEA) – CEVR at Tufts Medical Center https://research.tufts-nemc.org/cear4/default.aspx IDEAS(RePeC) – working papers http://ideas.repec.org/ International Society for Pharmacoeconomics and Outcomes Research (ISPOR) - conferences http://www.ispor.org/ “Value in Health” publishes abstracts NICE costing templates http://www.nice.org.uk/ NHS reference costs – unit costs for procedures and services http://www.dh.gov.uk/health/2012/11/2011-12-reference-costs/ ISD Scotland Cost Book http://www.isdscotlandarchive.scot.nhs.uk/isd/360.html Unit Costs of Health & Social Care – PSSRU http://www.pssru.ac.uk/ British National Formulary – cost of drugs http://www.bnf.org/bnf

Sources for statistics Cancer Research UK- prevalence, incidence http://www.cancerresearchuk.org/home/ Surveillance Epidemiology & End Results (SEER) – US National Cancer Institute - incidence, survival http://seer.cancer.gov NHS Information Centre - Hospital Episodes Statistics http://www.ic.nhs.uk/statisticsa-z Government Actuary’s Department - interim life tables, population projections http://www.gad.gov.uk/Demography%20Data/index.html Public Health Observatories – selected public health topics http://www.apho.org.uk/default.aspx Professional and patient organisations and charities

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