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

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 M, 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 

Childhood Disability

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

Cystic Fibrosis

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

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  

Depression

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

Diabetes (Type 1)

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 

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

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.

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

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

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

Miscarriage

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 

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 

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. 

All Ireland Institute of Hospice and Palliative Care launches the Top 10 Palliative Care Research Priorities for the island of Ireland 

Top ten priority areas for palliative care research in Ireland launched by All Ireland Institute of Hospice and Palliative Care, ehospice, 10 June 2015 

Smith R, Best S, Noble B, Identifying palliative and end-of-life care research priorities: a UK approach to consult end usersEuropean 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

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

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,  

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 

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

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

Tinnitus

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

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, volune 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

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