PSP articles and publications

Acne

Layton A, Eady EA, Peat M, Whitehouse H, Levell N, Ridd M, Cowdell F, Patel M, Andrews S, Oxnard C, Fenton M, Firkins L, Identifying acne treatment uncertainties via a James Lind Alliance Priority Setting Partnership.  BMJ Open, 17 July 2015, doi: 10.1136/bmjopen-2015-008085

Adult Social Work

Waterman C & Manthorpe J, Did it make a difference? Uses of the James Lind Alliance Adult Social Work research priorities partnership report. London: NIHR Policy Research Unit in Health and Social Care Workforce, The Policy Institute, King’s College London, April 2022, https://doi.org/10.18742/pub01-079

Blog from Lyn Romeo, Focusing on what matters, Department of Health and Social Care, November 2018

Advanced Heart Failure

Taylor C J, Huntley A L, Burden J, Gadoud A, Gronlund T, Jones NR, Wicks E, McKelvie S, Byatt K, Lehman R, King A, Mumford B, Feder G, Mant J, Hobbs R, Johnson R, Research priorities in advanced heart failure: James Lind Alliance Priority Setting Partnership.  BMJ Open Heart, 2020; 7:e001258, doi: 10.1136/openhrt-2020-001258

Blog, Rachel Johnson, Anna King, Involving advanced heart failure patients in shaping research questions: A Priority Setting Partnership. May 2019

Blog, Rachel Johnson, Setting the priorities for advanced heart failure research. PolicyBristol Hub, June 2018

Alcohol-related Liver Disease

ADAM (Alcohol Dependence and Adherence to Medicines) trial blog, January 2017

Simon Denegri's blog, Let's follow #DryJanuary with a concerted effort to research patient priorities in alcohol-related liver disease. January 2017

Anaesthesia (Canada)

Nova Scotia researcher leads study into anaesthesia, patients' priorities.  The ChronicleHerald, 30 May 2020

McKeen, D.M., Banfield, J.C., McIsaac, D.I. et al, Top ten priorities for anesthesia and perioperative research: a report from the Canadian Anesthesia Research Priority Setting Partnership. Canadian Journal of Anesthesia, 10 March 2020, 67(6): 641–654.  doi: 10.1007/s12630-020-01607-6

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

Anaesthesia and Perioperative Care

Boney O, Bell M, Bell N, Conquest A, Cumbers M, Drake S, Galsworthy M, Gath J, Grocott M, Harris E, Howell S, Ingold A, Nathanson M, Pinkney T, Metcalf L, Identifying research priorities in anaesthesia and perioperative care: final report of the joint National Institute of Academic Anaesthesia/James Lind Alliance Research Priority Setting Partnership.  BMJ Open, 16 December 2015, doi: 10.1136/bmjopen-2015-010006

Article about the PSP in July 2014 edition of Anaesthesia News

Asthma

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

Elwyn G, Crowe S, Fenton MA, Firkins L, Versnel J, Walker S, Cook I, Holgate S, Higgins B, Gelder C, Identifying and prioritizing uncertainties: patient and clinician engagement in the identification of research questions.  Journal of Evaluation in Clinical Practice, volume 16, issue 3, pages 627-631, June 2010, doi: 10.1111/j.1365-2753.2009.01262.x

Petit-Zeman S, Turning the tables, The Guardian online, 21 May 2007 

Autism

Cassidy S, Rodgers J, Understanding and prevention of suicide in autism.  The Lancet Psychiatry, 24 May 2017, volume 4, issue 6, e11, doi: 10.1016/S2215-0366(17)30162-1

Bleeding Disorders

Shapiro S, Stephensen D, Camp C, Carroll L, Collins P, Elston D, Gallagher P, Khair K, McKeown W, O'Hara J, Stanworth S, Waterman A, Woollard L, Upadhyaya S, Laffan M, The top 10 research priorities in bleeding disorders: a James Lind Alliance Priority Setting Partnership. British Journal of Haematology, April 2019, doi.org/10.1111/bjh.15928

Blood Pressure in Pregnancy

Ho A, Webster L, Bowen L, et al,  Research priorities for pregnancy hypertension: a UK priority setting partnership with the James Lind Alliance.  BMJ Open, July 2020, doi: 10.1136/bmjopen-2019-036347 

Blood Transfusion and Blood Donation

Hibbs SP, Brunskill SJ, Donald GC, Saunders HD, Murphy MF, Setting priorities for research in blood donation and transfusion: outcome of the James Lind Alliance priority-setting partnership. Transfusion, 1 October 2018, doi:10.1111/trf.15077

Authors from the United Kingdom Formally Prioritize Research Topics for Transfusion Medicine.  Reproduced with kind permission of America's Blood Centers.  December 2018

Breast Cancer Surgery

Potter S, Fairhurst K, Cowan K et al, Identifying research priorities in breast cancer surgery: a UK priority setting partnership with the James Lind Alliance. Breast Cancer Research and Treatment, November 2022,  https://doi.org/10.1007/s10549-022-06756-4

Broken Bones in Older people - Musculoskeletal Injury: fragility fracture of the lower limb and pelvis

Fernandez MA, Arnel L, Gould J, McGibbon A, Grant R, Bell P, White S, Baxter M, Griffin X, Chesser T, Keene D, Kearney RS, White C, Costa M, Research priorities in fragility fractures of the lower limb and pelvis: a UK priority setting partnership with the James Lind Alliance. BMJ Open, volume 8, Issue 10, 3 October 2018,  doi: 10.1136/bmjopen-2018-023301

Broken Bones of the Upper Limb in People over 50 (Fractures of the Shoulder, Arm or Wrist)

Sheehan WJ, Williams MA, Paskins Z, et al,  Research priorities for the management of broken bones of the upper limb in people over 50: a UK priority setting partnership with the James Lind Alliance.  BMJ Open, December 2019, doi: 10.1136/bmjopen-2019-030028 

Burn Injury (Global)

Richards H, Staruch R, King A, et al, Protocol for a Global Burns Research Priority Setting Partnership to agree the most important unanswered questions in international burns care.  BMJ Open, September 2022,  doi: 10.1136/bmjopen-2022-065120

Cardiac Arrest

Dainty KN, Seaton MB, Cowan K, et al, Partnering with survivors & families to determine research priorities for adult out-of-hospital cardiac arrest: A James Lind Alliance Priority Setting Partnership. Resuscitation Plus, Volume 7, September 2021, doi.org/10.1016/j.resplu.2021.100148

Cellulitis

Smith E, Patel M, Thomas KS, Which outcomes are reported in cellulitis trials?  Results of a review of outcomes included in cellulitis trials and a patient priority setting survey.  British Journal of Dermatology, 9 December 2017, https://doi.org/10.1111/bjd.16235

Thomas KS, Brindle R, Chalmers JR, Gamble B, Francis NA, Hardy D, Hooper J, Keeley V, Levell NJ, McPhee M, Metcalf L, Santer M, Tarpey M, Smart P, Wallace A, Wilkes S, Identifying priority areas for research into the diagnosis, treatment and prevention of cellulitis (erysipelas): results of a James Lind Alliance Priority Setting Partnership.  British Journal of Dermatology, 14 June 2017, doi: 10.1111/bjd.15634

Childhood Disability

Parr J, Ten years of the BACD Strategic Research Group: maximising opportunities for paediatric neurodisability research.  Developmental Medicine & Child Neurology.  8 May 2018.  https://doi.org/10.1111/dmcn.13764

Morris C, Simkiss D, Busk M, Morris M, Allard A, Denness J, Janssens A, Stimson A, Coghill J, Robinson K, Fenton M, Cowan K, Setting research priorities to improve the health of children and young people with neurodisability: a British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership.  BMJ Open, 28 January 2015, doi: 10.1136/bmjopen-2014-006233

Cleft Lip and Palate

Petit-Zeman S, Cowan K, Patients/carers and clinicians can set joint priorities for research in cleft lip and palate.  International Journal of Pediatric Otorhinolaryngology, volume 77, issue 3, March 2013, pages 309-310.  doi: 10.1016/j.ijporl.2012.11.035

Colorectal Cancer PSP (Germany)

Klotz R, Holze M, Dörr-Harim C, et al, Top 10 research priorities in colorectal cancer: results from the Colorectal Cancer Priority-Setting Partnership. Journal of Cancer Research Clinical Oncology,  June 2022. https://doi.org/10.1007/s00432-022-04042-w

Complex Fractures

Surgeons on Trial Podcast, Reconstructive Surgery Trials Network, Episode 2 with Chris Bretherton and Harry Claireaux discussing Priority Setting Partnerships

Bretherton CP, Claireaux HA, Gower J, Martin S, Thornhill A, Johnson L, Silvester L, Kearney RS, Baxter M, Dixon P, Giblin V, Griffin XL, Eardley W, Research priorities for the management of complex fractures: a UK priority setting partnership with the James Lind Alliance. BMJ Open, November 2021, doi: 10.1136/bmjopen-2021-057198 

Congenital Heart Disease

Drury NE, Herd CP, Biglino G, et al, Research priorities in children and adults with congenital heart disease: a James Lind Alliance Priority Setting Partnership. Open Heart, December 2022, doi: 10.1136/openhrt-2022-002147

Contraception

Blog, Judith Stephenson, Who decides which research questions about contraception should be studied?  Faculty of Sexual and Reproductive Healthcare of the Royal College of Obstetricians and Gynaecologists, November 2018

COPD Flare-ups

Alqahtani JS, Aquilina J, Bafadhel M, Bolton CE, Burgoyne T, Holmes S, King J, Loots J, McCarthy J, Quint JK, Ridsdale HA, Sapey E, Upadhyaya S, Wilkinson TMA, Hurst JR, Research priorities for exacerbations of COPD.  The Lancet Respiratory Medicine, May 14, 2021,  https://doi.org/10.1016/S2213-2600(21)00227-7

Cystic Fibrosis

Ng C, Dellschaft NS, Hoad CL, Gowland P, Major G, Smyth AR, Postprandial changes in gastrontestinal function and transit in cystic fibrosis assessed by Magnetic Resonance Imaging.  Journal of Cystic Fibrosis, June 16 2020.  https://doi.org/10.1016/j.jcf.2020.06.004  

Calthorpe RJ, Smith SJ, Rowbotham NJ, Leighton PA, Davies G, Daniels T, Gathercole K, Allen L, Elliott ZC, Smyth AR, What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment?  BMJ Open Respiratory Research 2020;7:e000601. doi: 10.1136/bmjresp-2020-000601

Rowbotham NJ, Smith S, Leighton PA, Rayner OC, Gathercole K, Elliott ZC, Nash EF, Daniels T, Duff AJA, Collins S, Chandran S, Peaple U, Hurley MN, Brownlee K, Smyth AR. The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and healthcare providers. Thorax. 2018;73(4):388-90.  doi: 10.1136/thoraxjnl-2017-210473

Davies G, Rowbotham NJ, Smith S, Elliot ZC, Gathercole K, Rayner O, Leighton PA, Herbert S, Duff AJA, Chandran S, Daniels T, Nash EF, Smyth AR. Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials. J Cyst Fibros. ePub 2019. doi.org/10.1016/j.jcf.2019.10.025

Kalaitzis IS, Rowbotham NJ, Smith SJ, Smyth AR. Do current clinical trials in cystic fibrosis match the priorities of patients and clinicans? A systematic review. J Cyst Fibros. 2019. doi.org/10.1016/j.jcf.2019.06.005

Rowbotham NJ, Smith S, Prayle AP, Robinson KA, Smyth AR. Gaps in the evidence for treatment decisions in cystic fibrosis: a systematic review. Thorax. 2019;74(3):229-36. doi.org/10.1136/thoraxjnl-2017-210858

Rowbotham NJ, Smyth AR. Patient engagement to prioritise CF research: Inclusive or selective? J Cyst Fibros. 2019;18(3):307-8.

Rowbotham NJ, Smith SJ, Davies G, Daniels T, Elliott ZC, Gathercole K, Rayner OC, Smyth AR. Can exercise replace airway clearance techniques in cystic fibrosis? A survey of patients and healthcare professionals. J Cyst Fibros. 2019. doi.org/10.1016/j.jcf.2019.10.026

Calthorpe RJ, Smith S, Gathercole K, Smyth AR. Using digital technology for home monitoring, adherence and self-management in cystic fibrosis: a state-of-the-art review. Thorax. 2020;75(1):72-7. doi.org/ 10.1136/thoraxjnl-2019-213233

Rowbotham NJ, Smith SJ, Elliott ZC, Leighton PA, Rayner OC, Morley R, Smyth AR, Adapting the James Lind Alliance priority setting process to better support patient participation: an example from cystic fibrosis, Research Involvement and Engagement, 20 August 2019. https://doi.org/10.1186/s40900-019-0159-x

Smith S, Rowbotham NJ, Smyth AR, Working with the patient and clinical community to deliver clinical research in cystic fibrosis: James Lind CF Phase II.  University of Nottingham, 8 February 2018

Blog from Janet Allen, Answering the big questions, February 2017

Degenerative Cervical Myelopathy 

Davies BM, Kwon BK, Fehlings MG, Kotter MRN, AO Spine RECODE-DCM: Why Prioritize Research in Degenerative Cervical Myelopathy?. Global Spine Journal, 2022:12(1_suppl):5S-7S. doi:10.1177/21925682211035379

Mowforth OD, Khan DZ, Wong MY, et al, Gathering Global Perspectives to Establish the Research Priorities and Minimum Data Sets for Degenerative Cervical Myelopathy: Sampling Strategy of the First Round Consensus Surveys of AO Spine RECODE-DCM. Global Spine Journal, 2022;12(1_suppl):8S-18S. doi:10.1177/21925682211047546

Tetreault L, Mowforth O, Khan DZ, et al, James Lind Alliance Priority Setting Partnership for Degenerative Cervical Myelopathy [AO Spine RECODE-DCM]: An Overview of the Methodology Used to Process and Short-List Research Uncertainties. Global Spine Journal, 2022;12(1_suppl):19S-27S. doi:10.1177/21925682211062501 

Davies BM, Mowforth O, Wood H, et al, Improving Awareness Could Transform Outcomes in Degenerative Cervical Myelopathy [AO Spine RECODE-DCM Research Priority Number 1]. Global Spine Journal, 2022;12(1_suppl):28S-38S. doi:10.1177/21925682211050927

Nouri A, Tessitore E, Molliqaj G, et al, Degenerative Cervical Myelopathy: Development and Natural History [AO Spine RECODE-DCM Research Priority Number 2]. Global Spine Journal, 2022;12(1_suppl):39S-54S. doi:10.1177/21925682211036071

Hilton B, Gardner EL, Jiang Z, et al, Establishing Diagnostic Criteria for Degenerative Cervical Myelopathy [AO Spine RECODE-DCM Research Priority Number 3]. Global Spine Journal, 2022;12(1_suppl):55S-63S. doi:10.1177/21925682211030871

Tetreault L, Garwood P, Gharooni A-A, et al, Improving Assessment of Disease Severity and Strategies for Monitoring Progression in Degenerative Cervical Myelopathy [AO Spine RECODE-DCM Research Priority Number 4]. Global Spine Journal, 2022;12(1_suppl):64S-77S. doi:10.1177/21925682211063854

Davies BM, Mowforth O, Gharooni A-A, et al, A New Framework for Investigating the Biological Basis of Degenerative Cervical Myelopathy [AO Spine RECODE-DCM Research Priority Number 5]: Mechanical Stress, Vulnerability and Time. Global Spine Journal, 2022;12(1_suppl):78S-96S. doi:10.1177/21925682211057546

Boerger TF, Hyngstrom AS, Furlan JC, et al, Developing Peri-Operative Rehabilitation in Degenerative Cervical Myelopathy [AO Spine RECODE-DCM Research Priority Number 6]: An Unexplored Opportunity? Global Spine Journal, 2022;12(1_suppl):97S-108S. doi:10.1177/21925682211050925

Gharooni A-A, Kwon BK, Fehlings MG, et al, Developing Novel Therapies for Degenerative Cervical Myelopathy [AO Spine RECODE-DCM Research Priority Number 7]: Opportunities From Restorative Neurobiology. Global Spine Journal, 2022;12(1_suppl):109S-121S. doi:10.1177/21925682211052920

Davies BM, Phillips R, Clarke D, et al, Establishing the Socio-Economic Impact of Degenerative Cervical Myelopathy Is Fundamental to Improving Outcomes [AO Spine RECODE-DCM Research Priority Number 8]. Global Spine Journal, 2022;12(1_suppl):122S-129S. doi:10.1177/21925682211039835

Martin AR, Tetreault L, Nouri A, et al, Imaging and Electrophysiology for Degenerative Cervical Myelopathy [AO Spine RECODE-DCM Research Priority Number 9]. Global Spine Journal, 2022;12(1_suppl):130S-146S. doi:10.1177/21925682211057484

Rodrigues-Pinto R, Montenegro TS, Davies BM, et al. Optimizing the Application of Surgery for Degenerative Cervical Myelopathy [AO Spine RECODE-DCM Research Priority Number 10]. Global Spine Journal, 2022;12(1_suppl):147S-158S. doi:10.1177/21925682211062494

Khan DZ, Hazenbiller O, Gronlund T, et al, The AO Spine RECODE-DCM International Collaborative—Establishing the Foundations for Accelerated and Patient-Centered Innovation. Global Spine Journal, 2022;12(1_suppl):159S-171S. doi:10.1177/21925682211035381

Davies, B. M. et al, (2019) ‘RE-CODE DCM (REsearch Objectives and Common Data Elements for Degenerative Cervical Myelopathy): A Consensus Process to Improve Research Efficiency in DCM, Through Establishment of a Standardized Dataset for Clinical Research and the Definition of the Research Priorities’. Global Spine Journal, 9(1_suppl), pp. 65S-76S. doi: 10.1177/2192568219832855.

Dementia

Report from the Visual Impairment and Dementia (VIDem) summit, February 2015, which worked with questions previously identified by the JLA PSPs in Dementia and in Sight Loss and Vision.  Report published March 2016.

Health and Social Care Research and Development (HSC R&D) Division, Evaluation of the Research Programme in Dementia Care, First Annual Report, November 2015 

Kelly S, Lafortune L, Hart N, Cowan K, Fenton M, Brayne C, on behalf of the Dementia Priority Setting Partnership, Dementia priority setting partnership with the James Lind Alliance: using patient and public involvement and the evidence base to inform the research agenda.  Age and Ageing 2015; 44:985-993, doi: 10.1093/ageing/afv143  

Dementia (Canada)

Bethell J, Pringle D, Chambers LW, Cohen C, Commisso E, Cowan K, Fehr P, Laupacis A, Szeto P, McGilton KS, Patient and Public Involvement in Identifying Dementia Research Priorities, Journal of the American Geriatrics Society, volume 66, issue 8, pages 1608-1612, August 2018, doi.org/10.1111/jgs.15596

Detecting Cancer Early

News from NIHR Manchester Biomedical Research Centre, Top ten research priorities for detecting cancer early published, 2 October 2019

Badrick E, Cresswell K, Ellis P, on behalf of the PSP Steering Group, Top ten research priorities for detecting cancer early, The Lancet, 23 September 2019, doi: https://doi.org/10.1016/S2468-2667(19)30185-9

Cancer survey is one resolution worth making and not breaking.  Saddleworth Independent, 19 January 2019

Diabetes (Type 1)

Oliver N, Holt RIG, The James Lind Alliance research priorities for diabetes. Diabetic Medicine, February 2019, https://doi.org/10.1111/dme.13917

Avari P, Reddy M, Oliver N, Is it possible to constantly and accurately monitor blood sugar levels, in people with Type 1 Diabetes, with a discrete device (non-invasive or invasive)?  Diabetic Medicine, February 2019, https://doi.org/10.1111/dme.13942

Livingstone R, Boyle JG, Petrie JR, How tightly controlled do fluctuations in blood glucose levels need to be to reduce the risk of developing complications in people with Type 1 diabetes?  Diabetic Medicine, January 2019, https://doi.org/10.1111/dme.13911

Boughton CK, Hovorka R, Is an artificial pancreas (closed-loop system) for Type 1 diabetes effective?  Diabetic Medicine, September 2018, https://doi.org/10.1111/dme.13816

Pickup JC, Is insulin pump therapy effective in Type 1 diabetes?  Diabetic Medicine, August 2018, https://doi.org/10.1111/dme.13793

Boddy K, Cowan K, Gibson A, Britten N, Does funded research reflect the priorities of people living with type 1 diabetes?  A secondary analysis of research questions.  BMJ Open 2017;7:e016540. doi: 10.1136/bmjopen-2017-016540

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 

Gadsby R, Snow R, Daly AC, Crowe S, Matyka K, Hall B, Petrie J, Setting research priorities for Type 1 diabetes.  Diabetic Medicine, volume 29, issue 10, pages 1321-1326, October 2012, doi: 10.1111/j.1464-5491.2012.03755.x 

Diabetes (Type 2)

Hopkins M, Andrews R, Salem V, Taylor R, le Roux CW, Robertson E, Burns E, Improving understanding of type 2 diabetes remission: research recommendations from Diabetes UK's 2019 remission workshop. Diabetic Medicine, July 2020, https://doi.org/10.1111/dme.14358

Javed S, Hayat T, Menon L, Alam U, Malik RA, Diabetic peripheral neuropathy in people with type 2 diabetes: too little too late.  Diabetic Medicine, December 2019,  https://doi.org/10.1111/dme.14194

England CY, Andrews RC, James Lind Alliance research priorities: should diet and exercise be used as an alternative to drugs for the management of type 2 diabetes or alongside them?  Diabetic Medicine, December 2019,  https://doi.org/10.1111/dme.14217

Wylie TAF, Shah C, Connor R, Farmer AJ, Ismail K, Millar B, Morris A, Reynolds RM, Robertson E, Swindell R, Warren E, Holt RIG, Transforming mental well-being for people with diabetes: research recommendations from Diabetes UK's 2019 Diabetes and Mental Well-Being Workshop. Diabetic Medicine, June 2019, https://doi.org/10.1111/dme.14048

Fagg J, Valabhji J, How do we identify people at high risk of Type 2 diabetes and help prevent the condition from developing?  Diabetic Medicine, November 2018, https://doi.org/10.1111/dme.13867

Taylor R, Barnes A, Can type 2 diabetes be reversed and how can this best be achieved? James Lind Alliance research priority number one. Diabetic Medicine, October 2018, doi: https://doi.org/10.1111/dme.13851

Dyson P, McArdle P, Mellor D, Guess N, James Lind Alliance research priorities: what role do carbohydrates, fats and proteins have in the management of Type 2 diabetes, and are there risks and benefits associated with particular approaches?  Diabetic Medicine, September 2018, https://doi.org/10.1111/dme.13826

Finer S, Robb P, Cowan K, Daly A, Shah K, Farmer A, Setting the top 10 research priorities to improve the health of people with Type 2 diabetes: a Diabetes UK-James Lind Alliance Priority Setting Partnership.  Diabetic Medicine, March 2018, doi: https://doi.org/10.1111/dme.13613

Finer S, Robb P, Cowan K, Daly A, Robertson E, Farmer A, Top ten research priorities for type 2 diabetes: results from the Diabetes UK–James Lind Alliance Priority Setting Partnership. The Lancet Diabetes & Endocrinology, 29 October 2017. doi: http://dx.doi.org/10.1016/S2213-8587(17)30324-8

Blog from Faye Riley, Diabetes UK.  Finding your Top 10 research priorities for Type 2 diabetes.  August 10 2017

Diabetes and Pregnancy

Blog, Steering the course of research: Putting women with diabetes in the driving seat, by Caroline Schmutz, 28 June 2021

Ayman G, Strachan JA, McLennan N, Malouf R, Lowe‐Zinola J, Magdi F, Roberts N, Alderdice F, Berneantu I, Breslin N, Byrne C, Carnell S, Churchill D, Grisoni J, Hirst JE, Morris A, Murphy HR, O’Brien J, Schmutz C, Shah K, Singal AS, Strachan MWJ, Cowan K and Knight M, The top 10 research priorities in diabetes and pregnancy according to women, support networks and healthcare professionals. Diabetic Medicine, 6 May 2021 e14588. https://doi.org/10.1111/dme.14588 

Nuffield Department of Population Health, News, Help prioritise diabetes and pregnancy research, 3 July 2019

Digital Technology for Mental Health

Blog, No more shiny things.  Digital mental health priorities show that e-healthcare has grown up, by Dan Robotham, November 2018

Hollis C, Sampson S, Simons L, Davies EB, Churchill R, Betton V, Butler D, Chapman K, Easton K, Gronlund TA, Kabir T, Rawsthorne M, Rye E, Tomlin A, Identifying research priorities for digital technology in mental health care: results of the James Lind Alliance Priority Setting Partnership. The Lancet Psychiatry, August 2018, DOI:https://doi.org/10.1016/S2215-0366(18)30296-7

Eating Disorders (Canada)

Obeid N, McVey G, Seale E, Preskow W, Norris M L, Cocreating research priorities for anorexia nervosa: The Canadian Eating Disorder Priority Setting Partnership. International Journal of Eating Disorders, February 2020, https://doi.org/10.1002/eat.23234

Eating Disorders (Netherlands)

Furth EF van, Meer A van der, Cowan K, Top 10 research priorities for eating disorders.  The Lancet Psychiatry, volume 3, No 8, p706-707, August 2016.  doi: 10.1016/S2215-0366(16)30147-X

Eczema

Eczema research: have we done more than scratched the surface?  Evidently Cochrane blog by Sarah Chapman, 5 November 2019

Batchelor JM, Ridd MJ, Clarke T, Ahmed A, Cox M, Crowe S, Howard M, Lawton S, McPhee M, Rani A, Ravenscroft JC, Roberts A, Thomas KS, The Eczema Priority Setting Partnership: a collaboration between patients, carers, clinicians and researchers to identify and prioritise important research questions for the treatment of eczema.  British Journal of Dermatology, volume 168, issue 3, pages 577-582, March 2013, doi: 10.1111/bjd.12040

Elbow Conditions

Electronic Cigarettes

Hunter A, Ross L, Gronlund T, Cooper S, UK Research Priorities for Electronic Cigarettes: A James Lind Alliance Priority Setting Partnership. International Journal of Environmental Research and Public Health,17 November 2020, doi.org/10.3390/ijerph17228500

Emergency Medicine

Smith J, Professor Jason Smith introduces PEN to the James Lind Alliance Emergency Medicine Priority Setting Partnership. Pan European Networks: Health, May 2017

Smith J, Keating L, Flowerdew L, O'Brien R, McIntyre S, Morley R, Carley S, on behalf of the PSP Steering Group, An Emergency Medicine Research Priority Setting Partnership to establish the top 10 research priorities in emergency medicine.  Emergency Medicine Journal, 4 May 2017, doi: 10.1136/emermed-2017-206745  

Blog about the PSP, January 2017, including podcast.  http://stemlynsblog.org/heres-the-top-10-and-more-research-priorities-in-em-james-lind-st-emlyns/

Setting research priorities in emergency care. Nursing times.net, online 25 January 2016

Cochrane news item, January 2016. Emergency Medicine Research Priority Setting Partnership

Blog, December 2015.  Nurses' opinions matter and they should be heard: How you can help influence research.  Nursing Times.net

Blog about the PSP, October 2015. http://stemlynsblog.org/james-lind-and-the-rcem-needs-you-and-you-and-you-st-emlyns/

Smith JE, Morley R, The emergency medicine research priority setting partnership. Emergency Medicine Journal, online 29 September 2015, doi: 10.1136/emermed-2015-205353

Blog, August 2015. ‘Patient and Public Involvement: Resource for Researchers'.  NIHR CLAHRC Yorkshire and Humber.

Endometriosis

Brady PC, Horne AW, Saunders PTK, Thomas AM, Missmer SA, Farland LV, Research priorities for endometriosis differ among patients, clinicians, and researchers, American Journal of Obstetrics Gynecology. 3 March 2020, pii: S0002-9378(20)30238-6.

Bafligil C, Thompson DJ, Lophatananon A, et al, Association between genetic polymorphisms and endometrial cancer risk: a systematic review, Journal of Medical Genetics, Published Online First: 17 February 2020,  doi:10.1136/jmedgenet-2019-106529

Downey A, Feel our pain: Endometriosis sufferers call for better support, faster diagnosis and more effective treatment for the agonising condition, The Sun, 19 May 2017

Women call for more studies to understand causes, find potential cure for endometriosis, News Medical Life Sciences, 19 May 2017

Mayor S, Research News: Endometriosis research should aim to improve diagnosis and halt progression, meeting hears, BMJ, 2017;357:j2438, doi:10.1136/bmj.j2438

Horne AW, Saunders PTK, Abokhrais IM, Hogg L, on behalf of the Endometriosis Priority Setting Partnership Steering Group, Top ten endometriosis research priorities in the UK and Ireland, The Lancet, 18 May 2017, doi: 10.1016/S0140-6736(17)31344-2

Blog, April 2017.  Fair Treatment for the Women of Wales contributes to the Endometriosis Priority Setting Workshop  

Epilepsy (Canada)

Singh A, Woelfle R, Chepesiuk R, Southward C, Antflick J, Cowan K, Hum K, Ng M, Burneo JG, Suller Marti A, on behalf of the Steering Group, Canadian epilepsy priority-setting partnership: Toward a new national research agenda. Epilepsy & Behavior, Volume 130, May 2022, 108673 https://doi.org/10.1016/j.yebeh.2022.108673 

Fibromyalgia (Canada)

Fitzcharles MA, Brachaniec M, Cooper L, Dubin R, Flynn T, Gerhold K, Hauser W, Cowan K, Laupacis A, Marleau R, Milot M, Szajcz-Keller N, Sumpton J, Walsh Z, El-Gabalawy H, A paradigm change to inform fibromyalgia research priorities by engaging patients and health care professionals, Canadian Journal of Pain, September 2017, http://dx.doi.org/10.1080/24740527.2017.1374820

First Time Soft Tissue Knee Injury

James Lind Alliance First Time Soft Tissue Knee Injury Priority Setting Partnership: Process Outline and Top 10 Priorities. Article on the British Orthopedic Association website, February 2023

Foot and Ankle Surgery

Mangwani J, on behalf of the Steering Group, James Lind Alliance Priority Setting Partnership - 'Top 10' research priorities in foot and ankle surgery. Journal of Trauma and Orthopaedics, March 2022, Vol 10, Issue 1

Frailty (Canada)

Bethell J et al, The Canadian Frailty Priority Setting Partnership: Research Priorities for Older Adults Living with Frailty. Canadian Geriatrics Journal, vol 22, No 1, March 2019, doi:https://doi.org/10.5770/cgj.22.336. 

Greener Operations: Sustainable Peri-Operative Practice

Clayton Smith M, Narayanan H, Shelton C, et al, Greener Operations: a James Lind Alliance Priority Setting Partnership to define research priorities in environmentally sustainable perioperative practice through a structured consensus approach. BMJ Open, Volume 13, Issue 13, March 2023, doi: 10.1136/bmjopen-2022-066622

James Lind Alliance and Greener Operations search for sustainable peri-operative practice. Article on the Association of Anaesthetists website, August 2022

Head and Neck Cancer (Alberta, Canada)

Lechelt LA, Rieger JM, Cowan K, et al, Top 10 research priorities in head and neck cancer: Results of an Alberta priority setting partnership of patients, caregivers, family members, and clinicians. Head & Neck. 2018;40:544–554. https://doi.org/10.1002/hed.24998

Heart Surgery

Lai FY, Abbasciano RG, Tabberer B, Kumar T, Murphy GJ, Identifying research priorities in cardiac surgery: a report from the James Lind Alliance Priority Setting Partnership in adult heart surgery. BMJ Open 2020, doi: 10.1136/bmjopen-2020-038001

Improving cardiac surgery benefits through key research. Hospital Healthcare Europe, 12 November 2019

Press release from NIHR Leicester Biomedical Research Centre, Improving cardiac surgery benefits through key research. 11 November 2019.

Murphy G, Kumar T, Lai, F, Page S, Tabberer B, Determining the Future of Cardiac Surgery Research. The Bulletin, Society for Cardiothoracic Surgery in Great Britain and Ireland, issue 5, page 33, January 2019

Hidradenitis Suppurativa

Ingram JR, Abbott R, Ghazavi M, Alexandroff AB, McPhee M, Burton T, Clarke T, The Hidradenitis Suppurativa Priority Setting Partnership.  The British Journal of Dermatology, volume 171, issue 6, pages 1422-1427, December 2014, doi: 10.1111/bjd.13163 

Hip and Knee Replacement for Osteoarthritis

Crowe S, Regan S, Gathering treatment uncertainties from patients/carers using different methods: evaluation report for Oxford Biomedical Research Centre (pdf, 1044.38 KB), July 2014

Hyperacusis

Fackrell K, Stratmann L, Kennedy V, et al, Identifying and prioritising unanswered research questions for people with hyperacusis: James Lind Alliance Hyperacusis Priority Setting Partnership. BMJ Open 2019, November 2019, doi: 10.1136/bmjopen-2019-032178

Fackrell K, Stratmann L, Gronlund TA, Hoare DJ, Top ten hyperacusis research priorities in the UK.  The Lancet, 2 February 2019, https://doi.org/10.1016/S0140-6736(18)32616-3

Hyperemesis Gravidarum 

Dean CR, Bierma H, Clarke R, et al, A patient–clinician James Lind Alliance partnership to identify research priorities for hyperemesis gravidarum.  BMJ Open,  January 2021, doi: 10.1136/bmjopen-2020-041254 

Hyperhidrosis

Dunford L J, Radley K, McPhee M, McDonald L, Oliver R J, Alexandroff A, Hussain H A, Miller J A, Tarpey M, and Clifton A V,  Setting research priorities for management and treatment of hyperhidrosis: the results of the James Lind Alliance Priority Setting Partnership. Clinical and Experimental Dermatology, June 2022, issue 6, pages 1109-1104 . https://doi.org/10.1111/ced.15122

Press Release, De Montfort University Leicester, Researchers set sights on permanent cure for excessive sweating, March 2019

Hypertension (Canada)

Khan N, Bacon SL, Khan S, Perlmutter S, Gerlinksy C, Dermer M, Johnson L, Alves F, McLean D, Laupacis A, Pui M, Berg A, Flowitt F, Hypertension management research priorities from patients, caregivers, and healthcare providers: A report from the Hypertension Canada Priority Setting Partnership Group.  The Journal of Clinical Hypertension, September 2017, doi: 10.1111/jch.13091

Idiopathic Intracranial Hypertension (IIH)

Mollan S, Hemmings K, Herd CP, et al, What are the research priorities for idiopathic intracranial hypertension? A priority setting partnership between patients and healthcare professionals.  BMJ Open 2019;9:e026573. doi: 10.1136/bmjopen-2018-026573 

Inflammatory Bowel Disease

Geldof J, LeBlanc JF, Lucaciu L, Segal J, Lees CW, Hart A, Are we addressing the top 10 research priorities in IBD?. Frontline Gastroenterology, Published Online First: 11 November 2020. doi: 10.1136/flgastro-2020-101579

Lomer MC, Hart AL, Verjee A, Daly A, Solomon J, McLaughlin J, What are the dietary treatment research priorities for inflammatory bowel disease?  A short report based on a priority setting partnership with the James Lind Alliance.  Journal of Human Nutrition and Dietetics, August 2017, doi.org/10.1111/jhn.12494

Hart AL, Lomer M, Verjee A, Kemp K, Faiz O, Daly A, Solomon J, McLaughlin J, What are the Top 10 research questions in the treatment of Inflammatory Bowel Disease?  A Priority Setting Partnership with the James Lind Alliance.  Journal of Crohn's and Colitis, volume 11, issue 2, 1 February 2017, pages 204-211, doi: 10.1093/ecco-jcc/jjw144

Intensive Care

Reay H, Arulkumaran N, Brett SJ, Priorities for Future Intensive Care Research in the UK: Results of a James Lind Alliance Priority Setting Partnership.  Journal of the Intensive Care Society, October 2014, volume 15, number 4 288-296, doi: 10.1177/175114371401500405

Brett S, Reay H, The James Lind Alliance Intensive Care Research Priority Setting Partnership: why another research prioritisation exercise?!  Journal of the Intensive Care Society, July 2014, volume 14, number 3, 204, doi: 10.1177/175114371301400305

Irritable Bowel Syndrome 

Black CJ, McKenzie YA, Scofield-Marlowe M, Setter P, Tarpey M, Ford A C, on behalf of the James Lind Alliance irritable bowel syndrome priority setting partnership, Top 10 research priorities for irritable bowel syndrome: results of a James Lind Alliance priority setting partnership. The Lancet Gastroenterology and Hepatology, 27th March 2023,  https://doi.org/10.1016/S2468-1253(23)00072-9

Juvenile Idiopathic Arthritis (Netherlands)

Aussems K., Schoemaker CG, Verwoerd A, Ambrust W, Cowan K, Dedding C, Research agenda setting with children with juvenile idiopathic arthritis: Lessons learned. Child: Care, Health and Development, 1– 12, August 2021 https://doi.org/10.1111/cch.12904

Verwoerd A, Armbrust W, Cowan K, Berg L van den, de Boer J, Bookelman S, Britstra M, Cappon J, Certan M, Dedding C, Haspel K van den, Hissink Muller P, Jongsma K, Lelieveld O, Loosdregt J Van, Olsder W, Rocha J, Schatorje E, Schouten N, Swat JF, Vastert S, Walter M, Schoemaker CG, Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis. Pediatric Rheumatology, April 2021, doi:10.1186/s12969-021-00540-2 

Schanberg LE, Mullins CD, If patients are the true north, patient-centeredness should guide research, Nature Reviews Rheumatology, 29 November 2018

Schoemaker CG, Armbrust W, Swart JF, Vastert SJ, Loosdregt J van, Verwoerd A, Whiting C, Cowan K, Olsder W, Versluis E, Vliet R van, Fernhout MJ, Bookelman SL, Cappon J, Berg JM van den, Schatorje E, Hissink Muller PCE, Kamphuis S, de Boer J, Lelieveld OTHM, Net J van der, Jongsma KR, Rensen A van, Dedding C, Wulffraat NM, Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method: a study protocol. Pediatric Rheumatology, 15 September 2018 16:57, https://doi.org/10.1186/s12969-018-0276-3 

Kidney Cancer (Canada)

Jones JM, Bhatt J, Avery J, Laupacis A, Cowan K, Basappa NS, Basiuk J, Canil C, Al-Asaaed S, Heng DYC, Wood L, Stacey D, Kollmannsberger C, Jewett MAS, Setting Research Priorities for Kidney Cancer, European Urology, May 8 2017, doi: 10.1016/j.eururo.2017.04.011

Jones, J., Bhatt, J., Avery, J., Laupacis, A., Cowan, K., Basappa, N., Basiuk, J., Canil, C., Al-Asaaed, S., Heng, D., Wood, L., Stacey, D., Kollmannsberger, C., & Jewett, M. A. (2017). The kidney cancer research priority-setting partnership: Identifying the top 10 research priorities as defined by patients, caregivers, and expert clinicians. Canadian Urological Association Journal, 11(12), 379-87. https://doi.org/10.5489/cuaj.4590

Kidney Transplant

Knight SR, Metcalfe L, O'Donoghue K, Ball ST, Beale A, Beale W, Hilton R, Hodkinson K, Lipkin G, Loud F, Marson LP, Morris PJ, Defining Priorities for Future Research: Results of the UK Kidney Transplant Priority Setting Partnership.  PLOS one, October 24 2016, doi:10.1371/journal.pone.0162136

Measuring the impact of patient and public involvement in the JLA Kidney Transplant PSP (pdf, 866.22 KB), 2014

Learning Difficulties (Scotland)

Lim AK, Rhodes S, Cowan K, et al, Joint production of research priorities to improve the lives of those with childhood onset conditions that impair learning: the James Lind Alliance Priority Setting Partnership for ‘learning difficulties’.  BMJ Open, 2019, http://dx.doi.org/10.1136/bmjopen-2018-028780

Learning difficulties: the 10 research priorities.  TES, 12 September 2018

Youngsters with learning difficulties help researchers.  STV News, 12 September 2018

Young people with learning difficulties identify areas to improve lives.  MailOnline, 12 September 2018

Young people with learning difficulties identify areas to improve lives. Belfast Telegraph Digital, 12 September 2018

Youngsters with support needs help set research priorities.  The National, 12 September 2018

Lichen Sclerosus

Simpson RC, Cooper SM, Kirtschig G, Larsen S, Lawton S, McPhee M, Murphy R, Nunns D, Rees S, Tarpey M, Thomas KS, The Lichen Sclerosus Priority Setting Partnership Steering Group, Future research priorities for lichen sclerosus - results of a James Lind Alliance Priority Setting Partnership.  British Journal of Dermatology, 25 November 2018, https://doi.org/10.1111/bjd.17447.

Liver Glycogen Storage Disease (International)

Peeks F. Boonstra WF, Baere L, Carøe C, Casswall T, Cohen D, Cowan K, Ferrecchia I, Ferriani A, Gimbert C, Landgren M, Maldonado NL, McMillan J, Nemeth A, Seidita N, Stachelhaus‐Theimer U, Weinstein DA, Derks T, Research priorities for liver glycogen storage disease: an international priority setting partnership with the James Lind Alliance. Journal of Inherited Metabolic Disease, October 2019, doi:10.1002/jimd.12178

Priority Setting Partnerships für Leberglykogenosen.  PDF reproduced with kind permission of the PSP.

Maternal and Newborn Health (Uganda)

Ditai J, Nakyazze M, Namutebi DA, Auma P, Chebet M, Nalumansi C, Nabulo GM, Mugabe K, Gronlund TA, Mboyne A, Weeks AD, Maternal and newborn health priority setting partnership in rural Uganda in association with the James Lind Alliance: a study protocol.  Research Involvement and Engagement 2020 6:57.  July 1st 2022,  https://doi.org/10.1186/s40900-020-00231-4 

ME/CFS

Tyson S, Staley K, Gronlund TA, Leary S, Emmans Dean M, Dransfield C, Baxter H, Elliot R, Ephgrave R, Bolton M, Barclay A, Hoyes G, Marsh B, Fleming R, Crawford J, West A, Webster-Phillips O, Betts C, O’Shea S, Patel V & Chowdhury S, Research priorities for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): the results of a James Lind alliance priority setting exercise. Fatigue: Biomedicine, Health & Behavior, September 2022, DOI: 10.1080/21641846.2022.2124775 

Medically Not Yet Explained Symptoms

Van der Feltz-Cornelis CM, Sweetman J, Edwards M, et al, Identifying the top research priorities in medically not yet explained symptoms (MNYES): a James Lind Alliance priority setting partnership. BMJ  Open, July 2022, doi: 10.1136/bmjopen-2022-061263 

Mental Health in Children and Young People

UCL Public Engagement Blog, Reflections and recommendations on co-producing with young people with past mental health difficulties, July 2020

Blog, Let's break the taboo and find out what helps young people on waiting lists, by Thomas Kabir, December 2018

Blog, Universities need to find ways to prevent students reaching crisis point, by Lucy Power, December 2018

Blog, Youth mental health research priorities: Right People, Right Questions  #YoungPeople MHQ, by Pooky Knightsmith, November 2018

Blog, Why we shouldn't be scared to talk about how parents impact children's mental health, by Vanessa Pinfold, November 2018

Blog, Therapy without the therapist: what role should self help play?, by Rachel Temple, November 2018

Mesothelioma

Stephens RJ, Whiting C, Cowan K on behalf of the JLA Mesothelioma PSP steering group, Research Priorities in Mesothelioma: A James Lind Alliance Priority Setting Partnership. Lung Cancer, online 4 June 2015,doi: 10.1016/j.lungcan.2015.05.021

Blog, July 2014, Katherine Cowan, Setting priorities for mesothelioma research, British Lung Foundation website 

Metastatic Breast Cancer (Canada)

Nixon NA, Simmons C, Lemieux J, Verma S, Research priorities in metastatic breast cancer: A James Lind Alliance Priority Setting Partnership. The Breast Journal, 2 September 2019, https://doi.org/10.1111/tbj.13525

Mild to Moderate Hearing Loss

Henshaw H, Sharkey L, Crowe D, Ferguson M, Research priorities for mild-to-moderate hearing loss in adults, The Lancet, volume 386, no. 10009, p2140-2141, 28 November 2015, doi: 10.1016/S0140-6736(15)01048-X 

Chapman S, Top 10 priorities for research on mild-moderate hearing loss, Evidently Cochrane, September 2015 

Miscarriage

Prior M, Bagness C, Brewin J, Coomarasamy A, Easthope L, Hepworth-Jones B, Hinshaw K, O'Toole E, Orford J, Regan L, Raine-Fenning N, Shakespeare J, Small R, Thornton J, Metcalf L, Priorities for research in miscarriage: a priority setting partnership between people affected by miscarriage and professionals following the James Lind Alliance methodology, BMJ Open, 2017;7:e016571. doi: 10.1136/bmjopen-2017-016571 

Miscarriage researcher makes plea for women's help, Mailonline, 20 November 2015  

Multiple Conditions in Later Life

Parker SG, Corner L, Laing K, Nestor G, Craig D, Collerton J, Frith J, Roberts HC, Sayer AA, Allan LM, Robinson L, Cowan K, Priorities for research in multiple conditions in later life (multi-morbidity): findings from a James Lind Alliance Priority Setting Partnership. Age and Ageing, Volume 48, Issue 3, May 2019, Pages 401-406.  https://doi.org/10.1093/ageing/afz014