JLA articles and publications

This page provides links to articles and publications relevant to the overall work of the James Lind Alliance.

2024

Crocker JC, Moore L, Ogden M, Crowe S, Khan  M, Schoemaker C, Roy NBA , Taylor M, Gronlund T, Bueser T, Tatum M , Davies B, Finlay  T,  Overarching Priorities for Health and Care Research in the United Kingdom: A Coproduced Synthesis of James Lind Alliance ‘Top 10s’. Health Expectations, Volume 27, issue 3, June 2024, doi.org/10.1111/hex.14096

2022

Adebajo A, Patients and healthcare professionals in priority setting partnerships: two very different sides of the same coinBMJ September 2022; 378 https://doi.org/10.1136/bmj.o2310 

2020

Jongsma K, van Seventer J, Verwoerd A, van Rensen A, Recommendations from a James Lind Alliance priority setting partnership - a qualitative interview studyResearch Involvement and Engagement 668 (2020). https://doi.org/10.1186/s40900-020-00240-3

Thompson AR, Guterres S, Bewley AP, Psychodermatological research priorities identified by Priority Setting PartnershipsClinical and Experimental Dermatology, British Association of Dermatologists, September 2020, doi:10.1111/ced.14447

Whiting C, Priority Setting Partnerships: Celebrating 16 years of work to reduce research waste, Evidently Cochrane, 2 October 2020

Staley K, Crowe S, Crocker JC, Madden M, Greenhalgh TWhat happens after James Lind Alliance Priority Setting Partnerships? A qualitative study of contexts, processes and impacts. Research Involvement and Engagement, 11 July 2020, https://doi.org/10.1186/s40900-020-00210-9

Levelink M, Voigt-Barbarowicz M, Levke Brütt A, Priorities of patients, caregivers and health‐care professionals for health research – A systematic reviewHealth Expectations, 9 July 2020, https://doi.org/10.1111/hex.13090

Schölvinck AFM, Pittens CACM, Broerse JEW, Patient involvement in agenda-setting processes in health research policy: A boundary work perspectiveScience and Public Policy, volume 47, Issue 2, April 2020, pages 246-255, https://doi.org/10.1093/scipol/scaa001 

Boney, O, Patient-oriented research: a new model for anesthesia in the 2lst century?Canadian Journal of Anesthesia, 10 March 2020, https://doi.org/10.1007/s12630-020-01608-5

Graham, L, Illingworth, BJG, Showell, M, Vercoe, M, Crosbie, EJ, Gingel, LJ, Farquhar, CM, Horne, AW, Prior, M, Stephenson, JM, Magee, LA, Duffy, JMN. Research priority setting in women’s health: a systematic reviewBJOG 2020; 127: 694– 700.  https://doi.org/10.1111/1471-0528.16150

Staley K, Crowe S, Reflections on maximising the impact of JLA PSPs (.PDF).  From a meeting of the JLA Advisory Group, January 2020

2019

Staley K, Crowe S, More than a Top 10: How James Lind Alliance Priority Setting Partnerships transform research, people and organisations, September 2019.  Project summary available.

Nygaard A, Halvorsrud L, Linnerud S, Grov EK, Bergland A, The James Lind Alliance process approach: scoping reviewBMJ Open, Volume 9, Issue 8, August 30 2019, doi: 10.1136/bmjopen-2018-027473 

Minogue V, Wells B, Patients and the public are essential to reducing research waste. BMJ Opinion, 9 August 2019

Assistive technology research and development work: 2017 to 2018, Department of Health and Social Care, February 2019

Gibson F, How Far Do Research Priority Setting Exercises Influence What Research Is Undertaken - A Little, a Lot, or Not at All?, Cancer Nursing, March/April 2019, vol 42, issue 2, p89-90, doi: 10.1097/NCC.0000000000000702

Blog, Stephanie Sampson, Cochrane Common Mental Disorders group, Inclusion in Mental Health Priority Setting.  March 2019

Blog, Stephanie Sampson, Cochrane Common Mental Disorders group, James Lind Alliance Priority-Setting Partnerships in mental health.  March 2019

Blog, Stephanie Sampson, Cochrane Common Mental Disorders group, How do we know our reviews ask the 'right' questions?  March 2019

Chalmers I, Atkinson P, Badenoch D, Glasziou P, Austvoll-Dahlgreen A, Oxman A, Clarke M, The James Lind Initiative: books, websites and databases to promote critical thinking about treatment claims, 2003 to 2018Research Involvement and Engagement, 2019 5:6.   February 2019.  https://doi.org/10.1186/s40900-019-0138-2 

2018

Open Research Agenda Setting, OECD Science, Technology and Innovation Policy Papers, No. 50, OECD Publishing, Paris.  December 2017

Cochrane Community, Cochrane-REWARD prizes for reducing research waste: 2018 winners.  September 2018

Glasziou P, Chalmers I, Research waste is still a scandal, BMJ, November 2018, doi: https://doi.org/10.1136/bmj.k4645

BMJ Open Science Blog, Katherine Cowan, Can patients be involved in preclinical research?  June 2018

BMJ talk medicine podcast, Katherine Cowan, Reaching A Priority.  March 2018

Simon Denegri's blog, James Lind Alliance PSPs are 50+ not out and I am glad they are batting for patients.  January 2018

Report of the JLA Community Workshop: 50 Completed Partnerships and Beyond with Appendices. January 2018

2017

Taylor J, Denegri S, Industry links with patient organisationsBMJ, 14 March 2017, 356:j1251, doi: https://doi.org/10.1136/bmj.j1251 

2016

Crowe S, Giles C, Making patient relevant clinical research a realityBMJ, 23 December 2016, 355:i6627, doi: 10.1136/bmj.i6627

Fiennes C, Avoiding waste in medical researchFinancial Times, 29 September 2016

Raeymaekers P, with contributions from Crowe S, Cowan K, Broerse J and Hertz-Pannier L.  Mind the gap! Multi-stakeholder dialogue for priority setting in health research.  A publication of the King Baudouin Foundation, Belgium, April 2016

White C, Don't Forget to Ask! The Patient and Relative Perspective. HealthManagement.org, volume 16, issue 1, 2016 

Whiting C, The James Lind Alliance - involving patients and their health professionals jointly in setting priorities for research (pdf, 146.13 KB)ENT and Audiology News, January/February 2016, volume 24, number 6, pp56-57.  Reproduced with kind permission of Pinpoint Scotland Ltd

James Lind: The man who helped to cure scurvy with lemons, BBC, 4 October 2016

2015

Crowe S, JLA team and speakers/contributors to the day, Report from JLA Symposium June 2015.  Learning from JLA Evaluations - Shaping Future JLA Methods. (pdf, 974.9 KB)      Copies of slides from the symposium are also available. (pdf, 1895.63 KB) 

Welsh E, Stovold E, Karner C, Cates C, Cochrane Airways Group reviews were prioritized for updating using a pragmatic approachJournal of Clinical Epidemiology, vol 68, issue 3, March 2015, pages 341-346, https://doi.org/10.1016/j.jclinepi.2014.11.002

Snow R, Crocker JC, Crowe S, Missed opportunities for impact in patient and carer involvement: a mixed methods case study of research priority settingResearch Involvement and Engagement 2015, 1:7, doi: 10.1186/s40900-015-0007-6  

Petit-Zeman S, Whose research is it anyway?  Oxford Biomedical Research Centre Patient Involvement Blog, July 2015 

Cowan K, Who decides the priorities for medical research?  Alliance magazine, June 2015

Crowe S, Fenton M, Hall M, Cowan K, Chalmers I, Patients', clinicians' and the research communities' priorities for treatment research: there is an important mismatchResearch Involvement and Engagement, volume 1, June 2015, doi: 10.1186/s40900-015-0003-x

Crowe S, Do patients and clinicians research priorities really matter?  BioMed Centralblog, June 2015 

Cochrane Agenda and Priority Setting Methods Group, Plain Language Summaries of Research Priority Setting Methods

2013

Chalmers I, Atkinson P, Fenton M, Firkins L, Crowe S, Cowan K, Tackling treatment uncertainties together: the evolution of the James Lind Initiative, 2003 - 2013Journal of the Royal Society of Medicine, December 2013, vol 106, no 12, 482-491, doi: 10.1177/0141076813493063

Petit-Zeman S, Locock L, Health care: Bring on the evidence, Nature Volume:501,Pages:160–161 (12 September 2013) doi:10.1038/501160a

NICE/AMRC/James Lind Initiative, Research Prioritisation (pdf, 216.15 KB).  Report of a meeting held on 28 January 2013. 

Nasser M, Welch V, Tugwell P, Ueffing E, Doyle J, Waters E, Ensuring relevance for Cochrane Reviews: evaluating processes and methods for prioritizing topics for Cochrane reviewsJournal of Clinical Epidemiology, May 2013, Vol 66, Issue 5, pages 474-482, doi: 10.1016/j.jclinepi.2012.01.001

Nasser M, Welch V, Ueffing E, Crowe S, Oliver S, Carlo R, Evidence in agenda setting: new directions for the Cochrane Collaboration. Journal of Clinical Epidemiology, May 2013, Vol 66, Issue 5, pages 469-471, doi: 10.1016/j.jclinepi.2012.08.006 

2012

Chalmers I, Essali A, Rezk E, Crowe S, Is academia meeting the needs of non-academic users of the results of research?  The Lancet, Vol 380, Special Issue, S43, October 2012, doi: 10.1016/S0140-6736(13)60219-6 

European Medical Research Councils Science Policy Briefing 45 Implementation of Medical Research in Clinical Practice

Uhm S, Liabo K, Stewart R, Rees R, Oliver S, Patient and public perspectives shaping scientific and medical research: panels for data, discussions and decisionsPatient Intelligence, 16 January 2012, doi: 10.2147/PI.S17835

Petit-Zeman S, Why patients and clinicians should set priorities for cardiac researchers. British Journal of Cardiac Nursing, February 2012, volume 7, number 2 

2011

Evans I, Thornton H, Chalmers I, Glasziou P, Testing Treatments: better research for better healthcare  

Chafe R, Born KB, Slutsky AS, Laupacis A, The rise of people powerNature 472, 410-311, 28 April 2011, doi:10.1038/472410a 

Stewart RJ, Caird J, Oliver K, Oliver S, Patients' and clinicians' research prioritiesHealth Expectations Vol 14, Issue 4, Pages 439-448, December 2011, doi 10.1111/j.1369-7625.2010.00648x 

JLA Annual Report 2010-11

Report (pdf, 73.56 KB)

Annexe 1 - JLA Performance Tracker (pdf, 72.67 KB)

Annexe 2 - Strategy and Development Group Members List (pdf, 27.53 KB)

Annexe 3 - Monitoring and Implementation Group Members List (pdf, 26.27 KB)

Annexe 4 - Vitiligo PSP article, British Journal of Dermatology

Annexe 5 - JLA PSP Top 10s (pdf, 66.18 KB) 

Annexe 6 - Prostate Cancer PSP evaluation (pdf, 47.81 KB)

Annexe 7 - Report: Asthma PSP - what happened next? (pdf, 99.76 KB) 

Annexe 8 - Report abstract: Patients' and clinicians' research priorities

Annexe 9 - Event report: Does industry listen to patients and if so, why? (pdf, 108.88 KB) 

Annexe 10 - Event report: Building on success (pdf, 1186 KB)

Annexe 11 - JLA Publications List (pdf, 34.25 KB)

Annexe 12 - JLA Presentations List (pdf, 29.62 KB)

Annexe 13 - JLA Affiliates Application Form (pdf, 46.66 KB) (.PDF)

Annexe 14 - JLA Affiliates Newsletter April 2010

Annexe 15 - JLA Affiliates Newsletter July 2010

Annexe 16 - JLA Affiliates Newsletter September 2010

Annexe 17 - JLA Affiliates Newsletter November 2010

Annexe 18 - JLA Affiliates Newsletter January 2011

Annexe 19 - JLA Affiliates Newsletter March 2011

Annexe 20 - JLA Affiliates List (pdf, 50.5 KB)

Annexe 21 - JLA Guidebook Press Release (pdf, 51.24 KB)

Annexe 22 - JLA Guidebook

Annexe 23 - JLA Performance Tracker (pdf, 73.56 KB) 

2010

Cowan K, The James Lind Alliance - Tackling Treatment Uncertainties TogetherJournal of Ambulatory Care Management 33, 3: 241-248 doi: 10.1097/JAC.0b013e3181e62cda

Petit-Zeman S, Denegri S, Natural Ground for Medical Research Charities: Public and Patient Involvement in Research FundingJournal of Ambulatory Care Management33, 3:249-256 doi: 10.1097/JAC.0b013e3181e5d279

Petit-Zeman S, Firkins L, Scadding JW, The James Lind Alliance: tackling research mismatchesThe Lancet vol 376, No. 9742, P667-669, 28 August 2010, doi: 10.1016/S0140-6736(10)60712-X

Opar A, Lind guidelines offer a checklist for research prioritiesNature Medicine 16, 620 doi:10.1038/nm0610-620b

Thomas RH, Hammond CL, Bodger OG, Rees MI, Smith PEM on behalf of the Wales Epilepsy Research Network & James Lind Alliance, Identifying and prioritising epilepsy treatment uncertaintiesJournal of Neurology, Neurosurgery & Psychiatry; 81:918-921 doi:10.1136/jnnp.2009.192716 

Building on Success - Opportunities to progress patient and public involvement in research prioritisation and commissioning (pdf, 1186 KB).  Event report. 

Petit-Zeman S, Giving people what they want.  Want to know which treatments work best?  Try asking patients, Prospect July 2010, page 58 

Agenda setting: Evidence & Equity.  Minutes of Joint Campbell-Cochrane Colloquium, Keystone, Co, USA, 20 October 2010 (pdf, 2046.86 KB)

JLA Annual Report 2008-10

Report (pdf, 139.17 KB)

Annexe 1 - JLA Performance Tracker 2008-9 (pdf, 160.4 KB)

Annexe 2 - JLA Performance Tracker 2009-10 (pdf, 114.39 KB) 

Annexe 3 - Strategy and Development Group Members List (pdf, 51.7 KB) (.PDF)

Annexe 4 - Monitoring and Implementation Group Members List(pdf, 48.05 KB)

Annexe 5 - Urinary Incontinence Priority Setting Partnership final report (pdf, 231.65 KB)

Annexe 6 - Urinary Incontinence Priority Setting Partnership evaluation (pdf, 71.23 KB) 

Annexe 7 - Vitiligo PSP Dispatches article issue 49 (not currently available)

Annexe 8 - Vitiligo PSP Dispatches article issue 50 (not currently available)

Annexe 9 - Vitiligo PSP Dispatches article 51 (not currently available) 

Annexe 10 - Patients' Priorities for Research into Epilepsy, PatientView report (pdf, 425.76 KB)

Annexe 11 - Systematic Map of Studies of Research Priorities, SSRU report (pdf, 586.11 KB)

Annexe 12 - Topic Specific Research Networks web review (pdf, 95.22 KB)

Annexe 13 - Scoping Research Priority Setting, TwoCan summary report (pdf, 33.59 KB) 

Annexe 14 - Outcomes in Clinical Research conference report (pdf, 493.52 KB)

Annexe 15 - Building on Success, event programme (pdf, 81.69 KB)

Annexe 16 - JLA Publications List (pdf, 54.47 KB) (.PDF)

Annexe 17 - JLA Presentations List (pdf, 51.45 KB)

Annexe 18 - JLA Affiliates Newsletter January 2009 (pdf, 153.49 KB)

Annexe 19 - JLA Affiliates Newsletter April 2009 (pdf, 631.88 KB)

Annexe 20 - JLA Affiliates Newsletter July 2009 (pdf, 390.57 KB)

Annexe 21 - JLA Affiliates Newsletter October 2009 (pdf, 525.24 KB)

Annexe 22 - JLA Affiliates Newsletter January 2010 (pdf, 388.09 KB)

Annexe 23 - JLA Affiliates List (pdf, 107.06 KB) (.PDF)

Annexe 24 - JLA Performance Metrics and Tracker 2010-11 (pdf, 58.99 KB) 

2009

Chalmers I, Glasziou P, Avoidable waste in the production and reporting of research evidenceThe Lancet, vol 374, issue 9683, P86-89, July 4 2009  https://doi.org/10.1016/S0140-6736(09)60329-9

Does industry listen to patients and if so why? (pdf, 108.88 KB)  Report on JLA and Association of Medical Research Charities think-tank

Scadding J, Chalmers I, The James Lind Alliance: tackling treatment uncertainties together, RSM News, issue 51, Spring 2009, page 11 

Crowe S, James Lind Alliance Priority Setting Partnerships.  Setting priorities for treatment uncertainties - a review of methods (pdf, 155.99 KB) 

2008

Staley K, Hanley B, Scoping research priority setting (and the presence of PPI in priority setting) with UK clinical research organisations and funders (.PDF), December 2008.

Chalmers I, Confronting therapeutic ignorance. BMJ 16 July 2008; 337 doi: http://dx.doi.org/10.1136/bmj.39555.392627.80  

Firkins L, The problem in setting research priorities: a layman's experience BMJ 4 July 2008; 337 doi: http://dx.doi.org/10.1136/bmj.a212

Thornton H, Patient and public involvement in clinical trials. BMJ 24 April 2008; 336 doi: 10.1136/bmj.39547.586100.80

Ruth Stewart, Sandy Oliver, A systematic map of studies of patients' and clinicians' research priorities (pdf, 586.11 KB). Report

Outcomes in clinical research - whose responsibility? (pdf, 493.52 KB)  Seminar report. 

JLA Annual Report 2007-2008

Report (pdf, 61.92 KB)

Annexe 1 - Performance Tracker (pdf, 37.29 KB)

Annexe 2 - Clinical Trials for Tomorrow, MRC (pdf, 73.15 KB)

Annexe 3 - Strategy and Development Group Members List (pdf, 54.77 KB) (.PDF)

Annexe 4 - Monitoring and Implementation Group Members List (pdf, 9.83 KB)

Annexe 5 - Research for Patient Benefit Programme (pdf, 24.86 KB) (.PDF)

Annexe 6 - UKCRN Patient and Public Involvement Strategic Plan 2006-2008 (pdf, 121.58 KB)

Annexe 7 - UKCRC Patient and Public Involvement Strategic Plan 2008-2011 (pdf, 100 KB)

Annexe 8 - A review of UK health research funding, Sir David Cooksey (pdf, 635.8 KB) (.PDF)

Annexe 9 - JLA workshop to set research priorities in Asthma (pdf, 378.4 KB) 

Annexe 10 - Reflective report on the JLA Asthma Priority Setting Meeting (pdf, 483.1 KB)

Annexe 11 - JLA Urinary Incontinence Working Partnership Protocol

Annexe 12 - JLA Urinary Incontinence Working Partnership Meeting May 2007 (pdf, 214.67 KB)

Annexe 13 - JLA Urinary Incontinence Working Partnership Meeting March 2008 

Annexe 14 - JLA Urinary Incontinence Working Partnership publications and articles (pdf, 10.5 KB)

Annexe 15 - JLA Dermatology Research for Patient Benefit bid (pdf, 59.63 KB)

Annexe 16 - Bibliography of research reports about patients', clinicians' and researchers' priorities for new research, Oliver and Gray (pdf, 719.56 KB)

Annexe 17 - Research priority setting in the UK, tender specification (pdf, 45.27 KB) 

Annexe 18 - Research priority setting in the UK, proposal by TwoCan Associates (pdf, 32.2 KB)

Annexe 19 - JLA seminar programme (pdf, 17.27 KB)

Annexe 20 - JLA publications and articles (pdf, 10.94 KB)

Annexe 21 - JLA presentations (pdf, 11.61 KB) (.PDF)

Annexe 22 - JLA website statistics (pdf, 279.87 KB)

Annexe 23 - JLA Affiliates list (pdf, 24.79 KB)

Fenton M, Timimi H, Chalmers I (2006) Development of the Database of Uncertainties about the Effects of Treatments (DUETs): a resource to help identify priorities for new research (pdf, 351.5 KB), September 2004 - January 2005.  

2006

Brown P, Brunnhuber K, Chalkidou K, Chalmers I, Clarke M, Fenton M, Forbes C, Glanville J, Hicks N, Moody J, Twaddle S, Timimi H, Young P, How to formulate research recommendationsBMJ 2006;333:804 doi: http://dx.doi.org/10.1136/bmj.38987.492014.94

Scadding JW, The James Lind Alliance: an opportunity for neurologists in therapeutic research? Practical Neurology 6:68-71 doi:10.1136/jnnp.2006.088740  

JLA Development Report 2004-2005

Report

Annexe 1 - HSC News article 2004

Annexe 2 - Lancet article, 2004

Annexe 3 - NICE 2004 publication references (pdf, 44.98 KB)

Annexe 4 - Steering Group member list (pdf, 94.75 KB)

Annexe 5 - Introduction to JLA document (pdf, 81.54 KB)

Annexe 6 - Presentations (pdf, 58.34 KB)

Annexe 7 - Programme for JLA meeting, December 2005 (pdf, 119.11 KB) 

Annexe 8 - JLA meeting report, HSC news article 2005

Annexe 9 - Bibliography of JLA relevant studies (pdf, 77.46 KB)

Annexe 10 - Articles about or referring to the JLA (pdf, 62.41 KB)

Annexe 11 - JLA Affiliates list (pdf, 69.2 KB)

Annexe 12 - Asthma Working Partnership chronology (pdf, 160.33 KB)

Annexe 13 - Notes from meeting re proposed Epilepsy Working Partnership (pdf, 75.33 KB) (.PDF) 

Annexe 14 - Process flowchart (pdf, 110.09 KB)

Annexe 15 - Influencing objectives (pdf, 47.33 KB) 

2005

Patients and researchers: tackling treatment uncertainty together, Health and Social Campaigners' News International, published by PatientView, Issue 24, page 16, December 2005

Chalmers I, The James Lind Alliance: Clinical trials registration, Health and Social Campaigners' News International, published by PatientView, Issue 22, pages 15-21, October 2005

House of Commons Health Committee, The Influence of the Pharmaceutical Industry,Fourth Report of the Session 2004-2005, volume 1, The Stationery Office Limited

Dealing with Uncertainty, Clinical Evidence, issue 13, BMJ Publishing Group 2005

Thornton H, Identifying patients' and clinicians' priorities in cancer clinical trials.  In Rawlins M, Littlejohns P, editors.  Delivering Quality in the NHS 2005.  Part Four: James Lind Alliance: identifying patients' and clinicians' priorities for therapeutic research.  Oxford Radcliffe Publishing, 2005: 62-66

Oliver S, Involving the public in health technology assessment: In Rawlins M, Littlejohns P, editors.  Delivering Quality in the NHS 2005.  Part Four: James Lind Alliance: Identifying patients' and clinicians' priorities for therapeutic research.  Oxford: Radcliffe Publishing, 2005: 57-61

Jobling R, Therapeutic research into psoriasis: patients' perspectives, priorities and interests.  In Rawlins M, Littlejohns P, editors.  Delivering Quality in the NHS 2005.  Part Four: James Lind Alliance: identifying patients' and clinicians' priorities for therapeutic research.  Oxford: Radcliffe Publishing, 2005: 53-56 

Arnold F, No commercial potential?  In Rawlins M, Littlejohns P, editors.  Delivering Quality in the NHS 2005.  Part Four: James Lind Alliance: identifying patients' and clinicians' priorities for therapeutic research.  Oxford: Radcliffe Publishing, 2005: 49-52 

2004

Partridge N, Scadding J, The James Lind Alliance: patients and clinicians should jointly identify their priorities for clinical trialsThe Lancet vol 364, No. 9449, p1923-1924, 27 November 2004 doi:10.1016/S0140-6736(04)17494-1

Chalmers I, Well informed uncertainties about the effects of treatmentsBMJ; 328 doi:https://dx.doi.org/10.1136/bmj.328.7438.475 

Chalmers I, Managers should help to address important uncertainties about the effects of treatments, BAMM (British Association of Medical Managers) News, June 2004

Confronting Important Uncertainties about the Effects of Treatments, Health and Society Campaigners' News, Issue 5, March 2004 

2000

Tallon D, Chard J, Dieppe P, Relation between agendas of the research community and the research consumerThe Lancet, volume 355, issue 9220, p2037-2040, June 10, 2000, https://doi.org/10.1016/S0140-6736(00)02351-5