Identifying uncertainties: DUETs and the NLH Specialist Libraries

1. Identifying uncertainties: DUETs and the NLH Specialist Libraries Douglas Grindlay University of Nottingham National Library for Health

2. Scope of talk • What is DUETs? • Why are the NLH Specialist Libraries in such a good position to compile uncertainties for DUETs? • Sources of uncertainties for DUETS, and progress so far…

3. What is DUETs?

4. DUETs: • The Database of Uncertainties about the Effects of Treatments www.duets.nhs.uk • A resource to help prioritise new research • Uncertainties that cannot be answered by reliable, up-to-date systematic reviews

5. Sources for uncertainties: • Patients’, carers’ and clinicians’ questions about treatment effects • Research recommendations in systematic reviews and clinical guidelines • Ongoing research, both systematic reviews in preparation and new 'primary' studies

6. Link to the James Lind Alliance: • DUETs set up to help meet aims of the James Lind Alliance (JLA) • JLA brings patients and clinicians together in 'Working Partnerships' to identify and prioritise unanswered research questions

7. Criteria for DUETS uncertainties: • No relevant systematic reviews identified • Relevant, up-to-date systematic reviews do not address continuing uncertainties • Existing relevant systematic reviews are not up-to-date • Up-to-date systematic reviews have revealed important continuing uncertainties

8. Why are the NLH Specialist Libraries in such a good position to compile uncertainties for DUETs?

9. Example: The NLH Skin Disorders Specialist Library • “One-stop” shop for quality, evidence-based information on skin disorders • Scope: Diagnosis, treatment, management & prevention of skin diseases • Content: Guidelines, systematic reviews, reference resources, CPD, patient information

10. The diversity of 1,000 skin disorders

11. The NLH Skin Disorders Specialist Library • Based at Centre of Evidence Based Dermatology, University of Nottingham • NHS-funded contract • Close links to Dermatology Department at Queen’s Medical Centre, Nottingham • HE-NHS Crossover!

12. The Centre of Evidence Based Dermatology

13. Skin Disorders Library community & stakeholders • Secondary care clinicians –dermatology, plastic surgery, GUM • General Practitioners –GPsWSI, non-specialist GPs • Nurses – Secondary and primary care • Other health professionals – e.g. pharmacists

14. Skin Disorders Library community & stakeholders (cont.) • Health academics • Health students • Health librarians • Health information specialists • Patients and public • Patient support groups

15. Communication with our community • Stakeholders Group (formal meetings and individual correspondence) • The Library • Monthly e-mail updates • National Knowledge Weeks • Feedback form • Talks and stand at conferences • Articles

16. Annual Evidence Updates • Part of National Knowledge Weeks • “Big 50”: acne, atopic eczema, psoriasis, skin cancer • Search for new evidence on a disease topic • Bring together systematic reviews

17. Implications for DUETs • NLH Specialist Libraries well placed to communicate with their communities of practice • Centre of potential network for collection of uncertainties and research prioritisation • Specialist Libraries are collecting systematic reviews already • Great potential for dissemination

18. Sources of uncertainties for DUETS, and progress so far…

19. The DUETS Skin Module Began work in January 2007 • 1st phase – Uncertainties invited from patient groups • 2nd phase – Uncertainties invited from health professionals • 3rd phase – Uncertainties identified from systematic reviews by Skin Disorders Specialist Library team

20. Uncertainties invited from patient groups • January 2007 – asked National Eczema Society, Psoriasis Association and Acne Support Group for patient questions

21. Uncertainties invited from patient groups (cont.) • Problem: support groups may lack resources to know if questions = true uncertainties • Needs search for systematic reviews by Specialist Library team to check – a lot of work! • Some rejects, e.g. long-term effects of antibiotics for acne

22. Uncertainties invited from health professionals • BAD asked to collect uncertainties from their guidelines and Committee meetings – still awaiting results • Contributions from individuals invited in National Knowledge Weeks – no response! • Uncertainties now coming from UK Dermatology Clinical Trials Network

23. Uncertainties identified from systematic reviews • Currently main focus of work • Tackling one disease at a time to avoid bias in coverage • Started with atopic eczema — 50+ uncertainties identified • Using Cochrane and non-Cochrane reviews • Difficulty in judging uncertainties – often not explicit or clear

24. Link to National Knowledge Weeks • Annual Evidence Updates involve search for systematic reviews – can be harvested for DUETs • Searches updated annually – update or remove (!) uncertainties as required • Chance to promote DUETs and seek contributions of uncertainties

25. Future tasks • Acne National Knowledge Week – detailed mapping of systematic reviews by treatment topic • Ideal for compiling DUETs uncertainties • Complete DUETs acne and psoriasis modules • Extend to other skin disorders

26. Conclusions • Best approach = comprehensive coverage topic by topic • Systematic reviews are easiest source for uncertainties • Uncertainties not always made explicit in systematic reviews • Difficult to mobilise active contributions to DUETs from both individuals and organisations

27. Conclusions (cont.) • DUETs is a work in progress • More modules will come on stream as all the Specialist Libraries become involved • Exciting time—potential of DUETs now being realised • Should influence future research AND patient care