The James Lind Alliance Guidebook Version 5 Written by Katherine Cowan and Sandy Oliver www.JLAguidebook.org 0 Version 5 © James Lind Alliance (2013) Welcome to the James Lind Alliance Guidebook. The Guidebook provides step-by-step guidance to establishing Priority Setting Partnerships. These bring patients, their carers and clinicians together to identify and prioritise treatment uncertainties for research, using James Lind Alliance (JLA) methods. This is the printable version of the Guidebook. The Guidebook, along with its links and downloadable documents, is also available online at www.JLAguidebook.org. Contents Section 1: INTRODUCTION ...................................................................................................................................................... 4 About the Guidebook .......................................................................................................................................................... 4 Introduction .................................................................................................................................................................... 4 Who is the Guidebook aimed at? ................................................................................................................................... 5 Using the Guidebook ....................................................................................................................................................... 5 The James Lind Alliance .................................................................................................................................................. 6 Acknowledgements ......................................................................................................................................................... 7 Contact and feedback ..................................................................................................................................................... 7 About treatment uncertainties ........................................................................................................................................... 7 What are treatment uncertainties? ................................................................................................................................ 8 The UK Database of Uncertainties about the Effects of Treatments (UK DUETs) .......................................................... 8 Section 2: HOW TO ................................................................................................................................................................. 9 How to establish a priority setting partnership .................................................................................................................. 9 Overview of Priority Setting Partnerships ....................................................................................................................... 9 Who’s who in the Priority Setting Partnership? ....................................................................................................... 11 Setting up the steering group ....................................................................................................................................... 11 What does the steering group commit to? ............................................................................................................... 12 1 Version 5 © James Lind Alliance (2013) Planning to work with UK DUETs .............................................................................................................................. 12 Identifying partners....................................................................................................................................................... 13 Initial awareness meeting ......................................................................................................................................... 14 Affiliation ................................................................................................................................................................... 16 Declaration of interests ............................................................................................................................................. 16 Exclusions .................................................................................................................................................................. 16 Managing the partnership ............................................................................................................................................ 17 Managing values and perspectives ........................................................................................................................... 17 Working with patients ............................................................................................................................................... 18 Working with clinicians ............................................................................................................................................. 19 Maintaining involvement and commitment ............................................................................................................. 20 How to identify treatment uncertainties .......................................................................................................................... 21 Treatment uncertainties and the JLA process .............................................................................................................. 21 Gathering treatment uncertainties ............................................................................................................................... 21 Patient-identified uncertainties ................................................................................................................................ 23 Clinician-identified uncertainties .............................................................................................................................. 24 Existing literature ...................................................................................................................................................... 24 Consent ......................................................................................................................................................................... 25 Processing submitted uncertainties .............................................................................................................................. 25 Download the survey data ........................................................................................................................................ 26 Remove out-of-scope submissions ........................................................................................................................... 27 Categorise eligible submissions ................................................................................................................................ 27 Format the submissions ............................................................................................................................................ 28 Verify the uncertainties ............................................................................................................................................ 30 Prepare the long-list of uncertainties ....................................................................................................................... 34 Preparing uncertainties for import into UK DUETs ....................................................................................................... 35 How to prioritise uncertainties ......................................................................................................................................... 37 The principles of JLA priority setting ............................................................................................................................. 38 Interim priority setting .................................................................................................................................................. 38 Collating interim priorities ........................................................................................................................................ 39 Final priority setting ...................................................................................................................................................... 41 Description of a final priority setting workshop ....................................................................................................... 43 2 Version 5 © James Lind Alliance (2013) Final priority setting methods ................................................................................................................................... 46 Skills for setting research priorities ........................................................................................................................... 50 Transparency and fairness ............................................................................................................................................ 51 How to evaluate ................................................................................................................................................................ 51 Why evaluate?