PSP articles and publications

This section provides links to articles and publications relevant to individual PSPs.

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

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

Advanced Heart Failure

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 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 approachJournal 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 questionsJournal 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 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

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

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 surveyBritish 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 researchDevelopmental 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 PartnershipBMJ 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 palateInternational Journal of Pediatric Otorhinolaryngology, volume 77, issue 3, March 2013, pages 309-310.  doi: 10.1016/j.ijporl.2012.11.035

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

Blog from Brook, on involvement of young people in Contraception research priority setting, May 2017

Cystic Fibrosis

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

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

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

Degenerative Cervical Myelopathy 

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 agendaAge 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

Depression

MQ blog on its work to identify research priorities in depression, March 2016 

Detecting Cancer Early

Cancer survey is one resolution worth making and not breakingSaddleworth Independent, 19 January 2019

Diabetes (Type 1)

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.  

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 

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

Diabetes (Type 2)

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

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 PartnershipDiabetic 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

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 (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

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

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 medicineEmergency Medicine Journal, 4 May 2017,  

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 researchNursing 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 partnershipEmergency 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

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  

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

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

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 PartnershipThe 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, 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

Hyperhidrosis

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 professionalsBMJ Open 2019;9:e026573. doi: 10.1136/bmjopen-2018-026573 

Inflammatory Bowel Disease

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 PartnershipJournal 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

Juvenile Idiopathic Arthritis (Netherlands)

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 protocolPediatric 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 cliniciansCanadian Urological Association Journal11(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 PartnershipPLOS 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)

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.  Aberdeen Evening Express, 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 livesBelfast 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 PartnershipBritish Journal of Dermatology, 25 November 2018, https://doi.org/10.1111/bjd.17447.

Liver Glycogen Storage Disease (International)

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

Mental Health in Children and Young People

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

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 methodologyBMJ Open 

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

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 

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

Multiple Sclerosis

Finding the top 10 research priorities (pdf, 2707.27 KB)Research Matters, January/February 2014.  Reproduced with kind permission of the Multiple Sclerosis Society

Neuro-oncology

Wagstaff A, Welcome to the revolution!  The changing role of patient advocates within researchCancer World, issue 66, May-June 2015, page 24

MacDonald L, UK patients and healthcare professionals work together to put brain and spinal cord tumours at the top of the clinical research agenda, Brain Tumour Magazine: World Edition 2015, page 41/42 

Non-alcohol-related Liver and Gallbladder Disorders

Gurusamy KS, Walmsley M, Davidson BR, et al, Top research priorities in liver and gallbladder disorders in the UK. BMJ Open, 7 March 2019;9:e025045.  doi: 10.1136/bmjopen-2018-025045 

Occupational Therapy

Markham S, The mission to determine the top ten research priorities for occupational therapy. BMJ Opinion, 27 August 2019

Blog from Alexander Smith for the British Geriatrics Society,  What makes you go ‘hmm…?’ about occupational therapy in the UK?, August  2019

Blog from Jenny Mac Donnell, Defining the unanswered questions of occupational therapy: the importance of engaging with diverse audiences, March 2019

Article about the PSP in February 2019 edition of OTnews

Palliative and end of life care

Todd-Fordham F, Candy B, McMillan S, Best S, Does current UK research address priorities in palliative and end-of-life-care?  European Journal of Palliative Care, 2016, 23(6)

Nelson A, Beyond the questions - thematic analysis of the first survey of the Palliative and end of life care PSP, October 2016

Read about the work of the Greater Manchester CLAHRC in 2016 to identify which of the Palliative and end of life care PSP priorities were of key interest locally. Blog, including their learning points. 

Smith R, Best S, Noble B, Identifying palliative and end-of-life care research priorities: a UK approach to consult end users.  European Journal of Palliative Care, 22: 114-117 (2015)

Smith R, Best S, Tate T, Noble B, Tuft J, Tracey N, Eley J, McCullugh A, Black J, Stockton N, Cheesley A, Berry L, Burton C, Dechamps A, Stevens E, Penny A, McEnhill L, McNair A, Cupid B, Maeso B, Chapman D, McIlfatrick S, Nelson A, Sivell S, Baillie J, VanGodwin J, Candy B, Cowan K, Research priority setting in palliative and end of life care: the James Lind Alliance approach consulting patients, carers and clinicians,European Association of Palliative Care World Congress, Copenhagen, Denmark, 8-10 May 2015

Best S, Tate T, Noble B, Smith R, Tuft J, Tracey N, McCullugh A, Eley J, Black J, Stockton M, Cheesley A, Berry L, Burton C, Dechamps A, Stevens E, Penny A, McEnhill L, McNair A, Cupid B, Maeso B, Chapman D, McIlfatrick S, Nelson A, Sivell S, Baillie J, VanGodwin J, Candy B, Beaumont N, Cowan K, Research priority setting in palliative and end of life care: the James Lind Alliance approach consulting patients, carers and clinicians, BMJ Supportive & Palliative Care 5:1 (2015); doi:10.1136/bmjspcare-2014-000838.3;

Best S, Tate T, Noble B, Eley J, Black J, Stockton M, Cheesley A, Berry L, Loftus R, Dechamps A, Stevens E, Penny A, McEnhill L, McNair A, Cupid B, Fryett S, Kerr A, McIlfatrick S, Nelson A, Candy B, Cowan K, The Palliative and end of life care Priority Setting Partnership (PeolcPSP): determining evidence uncertainties from the perspective of the end user of research, BMJ Supportive & Palliative Care 4, A42 (2014) doi:10.1136/bmjspcare-2014-000654.117;  

Parkinson's

Deane KHO, Flaherty H, Daley D, Pascoe R, Penhale B, Clarke CE, Sackley C, Storey S, Priority setting partnership to identify the top 10 research priorities for the management of Parkinson's diseaseBMJ Open, 14 December 2014, doi: 10.1136/bmjopen-2014-006434 

Patient Safety in Primary Care

Morris RL, Stocks SJ, Alam R, Taylor S, Rolfe C, Glover SW, Whitcombe J, Campbell SM, Identifying primary care patient safety research priorities in the UK: a James Lind Alliance Priority Setting Partnership.  BMJ Open, 28 February 2018, doi: 10.1136/bmjopen-2017-020870

Blog, December 2016.  What are patient and clinician priorities for research in primary care patient safety?  Rebecca Morris, Greater Manchester Primary Care Patient Safety Translational Research Centre

Blog, February 2016.  Welcome to the Revolution.  Richard Morley, James Lind Alliance Adviser working with the Patient Safety PSP

Pessary use for Prolapse

Lough K, Hagen S, McClurg D the JLA Pessary PSP Steering Group, et al.  Shared research priorities for pessary use in women with prolapse: results from a James Lind Alliance Priority Setting Partnership.  BMJ Open, April 2018,  doi: 10.1136/bmjopen-2017-021276 

Physiotherapy

Rankin G, Summers R, Cowan K, Barker K, Button K, Carroll SP, Fashanu B, Moran F, O'Neill B, ten Hove R, Waterfield J, Westwater-Wood S, Wellwood I, on behalf of the JLA Physiotherapy PSP Steering Group, Identifying Priorities for Physiotherapy Research in the UK: the James Lind Alliance Physiotherapy Priority Setting Partnership. Physiotherapy, 29 July 2019, https://doi.org/10.1016/j.physio.2019.07.006

Pressure Ulcers

Cullum N, Buckley H, Dumville J, Hall J, Lamb K, Madden M, Morley R, O'Meara S, Saramago Goncalves P, Soares M, Stubbs N, Wounds research for patient benefit: a 5-year programme of research.   NIHR Journals Library, August 2016, doi: 10.3310/pgfar-04130

Madden M, Morley R, Exploring the challenge of health research priority setting in partnership: reflections on the methodology used by the James Lind Alliance Pressure Ulcer Priority Setting Partnership, Research Involvement and Engagement, 2 April 2016 2:12, doi: 10.1186/s40900-016-0026-y 

Madden M, Providing patient centred pressure ulcer careNursing in Practice, 85, 3 August 2015

Ford S, List of 12 priorities for pressure ulcer study identified by UK researchersNursing Times.net, 8 May 2013

Madden M, Alienating evidence based medicine vs. innovative medical device marketing: A report on the evidence debate at a Wounds Conference.  Social Science and Medicine, 2012, 72 (12) pp. 2046-2052 

Madden M, My turn and my rightThe Lancet, volume 380, number 9858, page 1992-1993, 8 December 2012, doi: 10.1016/S0140-6736(12)62154-0

JLA Pressure Ulcer Partnership, Partnership gives a voice to pressure ulcer patientsThe Yorkshire Times online, 5th February 2012

Lamb K, Stubbs N, Dumville J, Cullum N, O'Meara S, Wounds Research for Patient Benefit: A five year programme of research in wound careEuropean Wound Management Association Journal, volume 11, number 2, page 43-46, May 2011 

Preterm Birth

Duley L, Uhm S, Oliver S, on behalf of the Preterm Birth Priority Setting Partnership Steering Group, Top 15 UK research priorities for preterm birthThe Lancet, volume 383, No. 9934, p2041-2042, 14 June 2014, doi: 10.1016/S0140-6736(14)60989-2

Uhm S, Alderdice F, Brady I, Chambers B, Chivers Z, Crowe S, David AL, Deshpande S, Gale C, Gyte G, James CP, Duley L, McNeill J, Shennan A, Turner MA, Oliver S, Setting Preterm Birth Research Priorities With Multiple Professions and Service Users in the UKArchives of Disease in Childhood, volume 99, issue suppl2, doi:10.1136/archdischild-2014-307384.349

Petit-Zeman S, Uhm S, Identifying research priorities in preterm birth. Infant, volume 8, issue 3, 2012 

Prostate Cancer

Tyndale-Biscoe S, Malcolm E, Gnanapragasam VJ, Setting priorities for prostate cancer researchTrends in Urology & Men's Health, volume 3, issue 2, page 31-33, March/April 2012

Lophatananon A, Tynedale Biscoe S, Malcolm, S, Rippon HJ, Holmes K, Firkins LA, Fenton M, Crowe S, Stewart-Brown S, Gnanapragasam VJ, Muir KR, The James Lind Alliance approach to priority setting for prostate cancer research: an integrative methodology based on patient and clinician participationBritish Journal of Urology International, volume 108, issue 7, pages 1040-1043, October 2011, doi: 10.1111/j.1464-410X.2011.10609.x

Halls E, Where are the clinicians when you need them, BMJ 2010; 340:c1845

Psoriasis

Majeed-Ariss R, McPhee M, McAteer H, Griffiths CEM, Young H, The top 10 research priorities for psoriasis in the U.K.: results of a James Lind Alliance psoriasis Priority Setting PartnershipBritish Journal of Dermatology, June 2019, doi.org/10.1111/bjd.18209

Majeed-Ariss R, McPhee M, Bundy C, Griffiths CEM, Young H, on behalf of the Psoriasis PSP Steering Group, Developing a Protocol to identify and prioritise research questions for psoriasis: A James Lind Alliance Priority Setting Partnership.  British Journal of Dermatology, September 2017, doi: 10.1111/bjd.15992

Safe Care for Adults with Complex Health Needs

News Report, Justine Alford, Imperial College London, Making care safer for adults with complex health needs, January 2019

Blog, Tessa Richards, BMJ, Setting research priorities - the people's choice, January 2019

Schizophrenia

Lloyd K, White J, Chalmers I, Schizophrenia: Patients' research priorities get fundedNature, 487, 432, 26 July 2012, doi: 10.1038/487432b

Lloyd K, White J, Democratizing clinical researchNature, 474, 277-278, 16 June 2011, doi: 10.1038/474277a

Lloyd K, Rose D, Fenton M, Identifying uncertainties about the effects of treatments for schizophreniaJournal of Mental Health, 2006, volume 15, number 3, pages 263-268, doi: 10.1080/09638230600731586 

Scoliosis

Cadwgan J, Personal reflections on the James Lind Alliance priority setting partnership for scoliosis management, June 2018

Sight Loss and Vision

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.

Vision 2020 UK hosts seminar for funders of eye research, Fight for Sight, 1 October 2015  

Rowe F, Wormald R, Cable R, Acton M, Bonstein K, Bowen M, Bronze C, Bunce C, Conroy D, Cowan K, Evans K, Fenton M, Giles H, Gordon I, Halfhide L, Harper R, Lightstone A, Votruba M, Waterman H, Zekite A, The Sight Loss and Vision Priority Setting Partnership (SLV-PSP): overview and results of the research prioritisation survey process. BMJ Open, 2014, doi: 10.1136/bmjopen-2014-004905

Deane-Pratt A, Can 3D facial imaging improve patient management in disfiguring eye disease?  Eye news, vol 21, issue 6, April/May 2015

McNeil R, Patient and public participation shapes biomedical research and access priorities in eye healthEye news, vol 21, issue 4, December/January 2015

Spinal Cord Injury

van Middendorp JJ, Allison HC, Ahuja S, Bracher D, Dyson C, Fairbank J, Gall A, Glover A, Gray L, El Masri W, Uttridge A, Cowan K, Top ten research priorities for spinal cord injury: the methodology and results of a British priority setting partnership.  Spinal Cordadvance online publication, 10 November 2015, doi: 10.1038/sc.2015.199 

van Middendorp JJ, Allison H, Cowan K, Top ten research priorities for spinal cord injuryThe Lancet Neurology, volume 13, number 12, p1167, December 2014, doi: 10.1016/S1474-4422(14)70253-4

Stillbirth

Heazell AEP, Whitworth MK, Whitcombe J, Glover SW, Bevan C, Brewin J, Calderwood C, Canter A, Jessop F, Johnson G, Martin I, Metcalf L, Research Priorities for Stillbirth: Process Overview and Results from the UK Stillbirth Priority Setting PartnershipUltrasound in Obstetrics & Gynecology, September 2015, doi: 10.1002/uog.15738  

Stroke

Pollock A, St George B, Fenton M, Crowe S, Firkins L, Development of a new model to engage patients and clinicians in setting research prioritiesJournal of Health Services Research & Policy, January 2014, volume 19, no 1, 12-18, doi: 10.1177/1355819613500665

Pollock A, St George B, Fenton M, Firkins L, Top 10 research priorities relating to life after stroke - consensus from stroke survivors, caregivers, and health professionalsInternational Journal of Stroke, volume 9, issue 3, pages 313-320, April 2014, doi: 10.1111/j.1747-4949.2012.00942.x 

Pollock A, St George B, Fenton M, Firkins L, Top ten research priorities relating to life after strokeThe Lancet Neurology, volume 11, number 3, page 209, March 2012, doi: 10.1016/S1474-4422(12)70029-7 

Petit-Zeman S, Stroke survivors have their say on research priorities. The Guardian, 29 November 2011   

Surgery for Common Shoulder Problems

Rangan A, Upadhyaya S, Regan S, Toye F, Rees J, Research priorities for shoulder surgery: results of the 2015 James Lind Alliance patient and clinician priority setting partnership. BMJ Open, 2016, doi:10.1136/bmjopen-2015-010412

Teenage and Young Adult Cancer

News from Great Ormond Street Hospital for Children, More mental health research needed for young people with cancer, 20 August 2019

Aldiss S, Fern LA, Phillips RS, et al.  Research priorities for young people with cancer: a UK priority setting partnership with the James Lind AllianceBMJ Open 2019;9:e028119. doi: 10.1136/bmjopen-2018-028119

Aldiss S, Fern LA, Phillips B, Gibson F. (2018) Top 10 Research Priorities for Teenage and Young Adult Cancer in the United Kingdom: Prioritising Need for Psychosocial Research. Pediatric Blood & Cancer, 65, Suppl 2, S563.

Aldiss S, Fern LA, Phillips B, Gibson F. (2018) Top 10 research priorities for teenage and young adult cancer in the United Kingdom: partnership between young people, carers and professionals. Supportive Care in Cancer, 26, Suppl 2, S568.

Video of Sue Morgan at the UK Oncology Nursing Society Annual Conference 2018 speaking about the research priorities

Blog from Lorna Fern, Bob Phillips, Faith Gibson and Susie Aldiss, talking about the behind the scenes process of identifying the Top 10, 10 August 2018 

Blog from Lorna Fern and Susie Aldiss, Top 10 research priorities for teenage and young adult cancer identified, 9 March 2018

Tinnitus

Deborah Hall and Nic Wray, Five years later: What happened after the James Lind Alliance Tinnitus Priority Setting PartnershipAnnual Tinnitus Research Review, British Tinnitus Association, 2018

Hall D, Mohamad N, Firkins L, Fenton M, Stockdale D, Identifying and prioritizing unmet research questions for people with tinnitus: the James Lind Alliance Tinnitus Priority Setting PartnershipClinical Investigation, volume 3, number 1, pages 21-28, doi: 10.4155/cli.12.129

Broomhead E, The Tinnitus Priority Setting Partnership.  Audio infos number 67, page 20-21, February 2012 

Urinary Incontinence

Buckley BS, Grant AM, Glazener CMA, Case study: A patient-clinician collaboration that identified and prioritised evidence gaps and stimulated research developmentJournal of Clinical Epidemiology, May 2013, volume 66, issue 5, pages 483-489, doi: 10.1016/j.clinepi.2011.03.016

Buckley BS, Grant AM, Tincello DG, Wagg AS, Firkins L, Prioritizing research: Patients, carers, and clinicians working together to identify and prioritize important clinical uncertainties in urinary incontinenceNeurology and Urodynamics, volume 29, issue 5, pages 708-714, June 2010, doi: 10.1002/nau.20816

McClurg D, The James Lind Alliance and Urinary Incontinence, Journal of the Association of Chartered Physiotherapists in Women's Health, Spring 2010, 106

Buckley BS, Grant AM, Tincello DG, Wagg A, Firkins L, Reaching a consensus on research priorities in urinary incontinence, Nursing Times.net, 9 December 2009

Buckley B, Identifying uncertainties to prioritise research, Nursing Times.net, 9 May 2008

Buckley B, Grant AM, Firkins L, Greene AC, Frankau J, Working together to identify research questions, Continence UK, 2007, volume 1, number 1 

Vitiligo

Eleftheriadou V, Whitton ME, Gawkrodger DJ, Batchelor J, Corne J, Lamb B, Ersser S, Ravenscroft J, Thomas KS, Future research into the treatment of vitiligo: where should our priorities lie?  Results of the vitiligo priority setting partnershipBritish Journal of Dermatology, volume 164, issue 3, pages 530-536, March 2011, doi: 10.1111/j.1365-2133.2010.10160.x 

Eleftheriadou V, Whitton M, Top Ten uncertainties for the treatment of Vitiligo (pdf, 254.17 KB)Dispatches (The magazine of the Vitiligo Society), March 2011.  Reproduced with kind permission of the Vitiligo Society

Lushey C, Setting priorities and reducing uncertainties for people with skin disease (SPRUSD) (pdf, 180.97 KB), Dispatches (The Magazine of the Vitiligo Society), March 2009.  Reproduced with kind permission of the Vitiligo Society

Whitton M, The James Lind Alliance: An important initiative in fostering good research practices in all spheres of medicine, Skin Care Campaign News, issue 32, November 2005  

Womb Cancer

Wan Y L, Beverley-Stevenson R, Carlisle D, Clarke S, Edmonson RJ, Glover S, Holland J, Hughes C, Kitchener HC, Kitson S, Miles T, Morley R, Morrison J, Nelson L, Powell M, Sadler L, Tomlinson A, Tylko-Hill K, Whitcombe J, Crosbie EJ, Working together to shape the endometrial cancer research agenda: The top ten unanswered research questionsGynecologic Oncology, September 2016, doi:10.1016/j.ygyno.2016.08.333  

Articles from Related Priority Setting Exercises -

Prioritising Recruitment in Randomised Trials (PRioRiTy)

Blog from Tarang Sharma, Cochrane, September 2018.  Stakeholder engagement at the centre of priority setting: evolving priorities for much more

Healy P, Galvin S, Williamson PR, Treweek S, Whiting C, Maeso B, Bray C, Brocklehurst P, Clarke Moloney M, Douiri A, Gamble C, Gardner HR, Mitchell D, Stewart D, Jordan J, O'Donnell M, Clarke M, Pavitt SH, Woodford Guegan E, Blatch-Jones A, Smith V, Reay H, Devane D, Identifying trial recruitment uncertainties using a James Lind Alliance Priority Setting Partnership - the PRioRiTy (Prioritising Recruitment in Randomised Trials) study.  Trials, 1 March 2018, doi: 10.1186/s13063-018-2544-4 

Blog from Wendy Mitchell, who attended the priority setting workshop in December 2016

Prioritising Retention in Randomised Trials (PRioRiTy II)

Brunsdon D, Biesty L, Brocklehurst P, Brueton V, Devane D, Elliott J, Galvin S, Gamble C, Gardner H, Healy P, Hood K, Jordan J, Lanz D, Maeso B, Roberts A, Skene I, Soulsby I, Stewart D, Torgeson D, Treweek S, Whiting C, Wren S, Worrall A, Gillies K, What are the most important unanswered research questions in trial retention?  A James Lind Alliance Priority Setting Partnership - The PRioRiTy II (Prioritising Retention in Randomised Trials) StudyTrials, 11 March 2019 • DOI: https://doi.org/10.21203/rs.2.439/v1

Blog about the priority setting workshop, Heidi Gardner, October 2018

Blog from Katie Gilles and Derek Stewart, May 2018

Dialysis priority setting in Canada

Manns B, Hemmelgarn B, Lillie E, Crowe S, Cyr A, Gladish M, Large C, Silverman H, Toth B, Wolfs W, Laupacis A, Setting Research Priorities for Patients on or Nearing DialysisClinical Journal of the American Society of Nephrology, May 2014, doi: 10.2215/CJN.01610214 

Dystrophic Epidermolysis Bullosa priority setting in Spain

Davila-Seijo P, Hernandez-Martin A, Morcillo-Makow E, Rajan C, Garcia-Doval I, Current dystrophic epidermolysis bullosa research does not match research needs perceived by patients and cliniciansJournal of the American Academy of Dermatology, volume 71, issue 5, November 2014, pages 1008-1011, doi: 10.1016/j.jaad.2014.05.038

Davila-Seijo P, Hernandez-Martin A, Morcillo-Makow E, de Lucas R, Dominguez E, Romero N, Monros E, Feito M, Carretero L, Aranegui B, Garcia-Doval I, Prioritization of therapy uncertainties in Dystrophic Epidermolysis Bullosa: where should research direct to?  An example of priority setting partnership in very rare disordersOrphanet Journal of Rare Diseases, 8:61, published 22 April 2013, doi: 10.1186/1750-1172-8-61

Epilepsy

Hughes EG, Thomas RH, Epilepsy treatment priorities:answering the questions that matterJournal of Neurology, Neurosurgery and Psychiatry, 1 June 2017, doi: 10.1136/jnnp-2016-315135 

Thomas RH, Hammond CL, Bodger OG, Rees MI, Smith PEM, Identifying and prioritising epilepsy treatment uncertaintiesJournal of Neurology, Neurosurgery and Psychiatry, doi: 10.1136/jnnp.2009.192716