This page provides links to articles and publications relevant to the overall work of the James Lind Alliance.
JLA articles and publications
2022
2020
Jongsma K, van Seventer J, Verwoerd A, van Rensen A, Recommendations from a James Lind Alliance priority setting partnership - a qualitative interview study. Research Involvement and Engagement 6, 68 (2020). https://doi.org/10.1186/s40900-020-00240-3
Thompson AR, Guterres S, Bewley AP, Psychodermatological research priorities identified by Priority Setting Partnerships, Clinical 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 T, What 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 review. Health 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 perspective. Science 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
, , , , , , , , , , , . Research priority setting in women’s health: a systematic review. BJOG 2020; 127: 694– 700. https://doi.org/10.1111/1471-0528.16150
Staley K, Crowe S, Reflections on maximising the impact of JLA PSPs. 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 review. BMJ 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 2018. Research 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
NIHR Health Research Futures podcast from Katherine Cowan, talking about the JLA priority setting process, managing bias, and having impact. July 2018
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 organisations. BMJ, 14 March 2017, 356:j1251, doi: https://doi.org/10.1136/bmj.j1251
2016
Crowe S, Giles C, Making patient relevant clinical research a reality. BMJ, 23 December 2016, 355:i6627, doi: 10.1136/bmj.i6627
Fiennes C, Avoiding waste in medical research. Financial 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 approach. Journal 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 setting. Research 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 mismatch. Research 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
2014
INVOLVE, November 2014, Guidance on the use of social media to involve the public in research
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 - 2013. Journal 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 () 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 reviews. Journal 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 decisions. Patient 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 power. Nature 472, 410-311, 28 April 2011, doi:10.1038/472410a
Stewart RJ, Caird J, Oliver K, Oliver S, Patients' and clinicians' research priorities. Health Expectations Vol 14, Issue 4, Pages 439-448, December 2011, doi 10.1111/j.1369-7625.2010.00648x
JLA Annual Report 2010-11
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)
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 (pdf, 836.97 KB)
Annexe 23 - JLA Performance Tracker (pdf, 73.56 KB)
2010
Cowan K, The James Lind Alliance - Tackling Treatment Uncertainties Together. Journal 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 Funding. Journal 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 mismatches. The 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 priorities. Nature 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 uncertainties. Journal of Neurology, Neurosurgery & Psychiatry; 81:918-921doi:10.1136/jnnp.2009.192716
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
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)
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)
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)
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 evidence. The 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
2008
Staley K, Hanley B, Scoping research priority setting (and the presence of PPI in priority setting) with UK clinical research organisations and funders, 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
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)
Annexe 4 - Monitoring and Implementation Group Members List (pdf, 9.83 KB)
Annexe 5 - Research for Patient Benefit Programme (pdf, 24.86 KB)
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)
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 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)
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
Firkins L, The James Lind Alliance, GIG Today winter newsletter
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 recommendations. BMJ 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)
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 trials. The 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 treatments. BMJ; 328 doi:http://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 consumer. The Lancet, volume 355, issue 9220, p2037-2040, June 10, 2000, https://doi.org/10.1016/S0140-6736(00)02351-5