PSP articles and publications
Acne
Identifying acne treatment uncertainties via a James Lind Alliance Priority Setting Partnership
Layton A, Eady EA, Peat M, Whitehouse H, Levell N, Ridd M, Cowdell F, Patel M, Andrews S, Oxnard C, Fenton M, Firkins L.
July 2015, doi: 10.1136/bmjopen-2015-008085
Adult Social Work
Did it make a difference? Uses of the James Lind Alliance Adult Social Work research priorities partnership report
Waterman C, Manthorpe J.
April 2022, doi.org/10.18742/pub01-079
Focusing on what matters
Blog from Lyn Romeo.
November 2018
Advanced Heart Failure
Research priorities in advanced heart failure: James Lind Alliance Priority Setting Partnership (.PDF)
Taylor C J, Huntley A L, Burden J, Gadoud A, Gronlund T, Jones N R, Wicks E, McKelvie S, Byatt K, Lehman R, King A, Mumford B, Feder G, Mant J, Hobbs R, Johnson R.
2020, doi: 10.1136/openhrt-2020-001258
Involving advanced heart failure patients in shaping research questions: A Priority Setting Partnership
Blog by Rachel Johnson, Anna King.
May 2019
Setting the priorities for advanced heart failure research
Blog by Rachel Johnson.
June 2018
Alcohol-related Liver Disease
ADAM (Alcohol Dependence and Adherence to Medicines) trial blog
January 2017
Let's follow #DryJanuary with a concerted effort to research patient priorities in alcohol-related liver disease
Blog by Simon Denegri.
January 2017
Anaesthesia (Canada)
Nova Scotia researcher leads study into anaesthesia, patients' priorities
Blog by John McPhee.
30 May 2020
Top ten priorities for anesthesia and perioperative research: a report from the Canadian Anesthesia Research Priority Setting Partnership
McKeen D M, Banfield J C, McIsaac D I, et al.
10 March 2020, doi: 10.1007/s12630-020-01607-6
Patient-oriented research: a new model for anesthesia in the 2lst century?
Boney, O.
10 March 2020, doi.org/10.1007/s12630-020-01608-5
Anaesthesia and Perioperative Care
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
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.
16 December 2015, doi: 10.1136/bmjopen-2015-010006
Asthma
Cochrane Airways Group reviews were prioritized for updating using a pragmatic approach
Welsh E, Stovold E, Karner C, Cates C.
March 2015, doi.org/10.1016/j.jclinepi.2014.11.002
Identifying and prioritizing uncertainties: patient and clinician engagement in the identification of research questions
Elwyn G, Crowe S, Fenton M A, Firkins L, Versnel J, Walker S, Cook I, Holgate S, Higgins B, Gelder C.
June 2010, doi: 10.1111/j.1365-2753.2009.01262.x
Turning the tables
News article by Petit-Zeman, S.
21 May 2007
Autism
Understanding and prevention of suicide in autism
Cassidy S, Rodgers J.
24 May 2017, doi: 10.1016/S2215-0366(17)30162-1
Bleeding Disorders
The top 10 research priorities in bleeding disorders: a James Lind Alliance Priority Setting Partnership
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.
April 2019, doi.org/10.1111/bjh.15928
Blood Pressure in Pregnancy
Research priorities for pregnancy hypertension: a UK priority setting partnership with the James Lind Alliance
Ho A, Webster L, Bowen L, et al.
July 2020, doi: 10.1136/bmjopen-2019-036347
Blood Transfusion and Blood Donation
Setting priorities for research in blood donation and transfusion: outcome of the James Lind Alliance priority-setting partnership
Hibbs S P, Brunskill S J, Donald G C, Saunders H D, Murphy M F.
1 October 2018, doi:10.1111/trf.15077
Breast Cancer Surgery
Identifying research priorities in breast cancer surgery: a UK priority setting partnership with the James Lind Alliance
Potter S, Fairhurst K, Cowan K, et al.
November 2022, doi.org/10.1007/s10549-022-06756-4
Broken Bones in Older people - Musculoskeletal Injury: fragility fracture of the lower limb and pelvis
Research priorities in fragility fractures of the lower limb and pelvis: a UK priority setting partnership with the James Lind Alliance
Fernandez M A, Arnel L, Gould J, McGibbon A, Grant R, Bell P, White S, Baxter M, Griffin X, Chesser T, Keene D, Kearney R S, White C, Costa M.
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)
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
Sheehan W J, Williams M A, Paskins Z, et al.
December 2019, doi: 10.1136/bmjopen-2019-030028
Burn Injury (Global)
Protocol for a Global Burns Research Priority Setting Partnership to agree the most important unanswered questions in international burns care
Richards H, Staruch R, King A, et al.
September 2022, doi: 10.1136/bmjopen-2022-065120
Cardiac Arrest
Partnering with survivors & families to determine research priorities for adult out-of-hospital cardiac arrest: A James Lind Alliance Priority Setting Partnership
Dainty K N, Seaton M B, Cowan K, et al.
September 2021, doi.org/10.1016/j.resplu.2021.100148
Cellulitis
Which outcomes are reported in cellulitis trials? Results of a review of outcomes included in cellulitis trials and a patient priority setting survey
Smith E, Patel M, Thomas K S.
9 December 2017, doi.org/10.1111/bjd.16235
Identifying priority areas for research into the diagnosis, treatment and prevention of cellulitis (erysipelas): results of a James Lind Alliance Priority Setting Partnership
Thomas K S, Brindle R, Chalmers J R, Gamble B, Francis N A, Hardy D, Hooper J, Keeley V, Levell N J, McPhee M, Metcalf L, Santer M, Tarpey M, Smart P, Wallace A, Wilkes S.
14 June 2017, doi: 10.1111/bjd.15634
Childhood Disability
Ten years of the BACD Strategic Research Group: maximising opportunities for paediatric neurodisability research
Parr J.
8 May 2018, doi.org/10.1111/dmcn.13764
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
Morris C, Simkiss D, Busk M, Morris M, Allard A, Denness J, Janssens A, Stimson A, Coghill J, Robinson K, Fenton M, Cowan K.
28 January 2015, doi: 10.1136/bmjopen-2014-006233
Children's Cancer
Research priorities for children’s cancer: a James Lind Alliance Priority Setting Partnership in the UK
Aldiss S, Hollis R, Phillips B, et al.
20 December 2023, doi: 10.1136/bmjopen-2021-055780
What matters to you? Engaging with children in the James Lind Alliance Children's Cancer Priority Setting Partnership
Aldiss S, Hart-Spencer P, Langton L, Malik S, McEvoy K, Morgan JE, Reed-Berendt R, Hollis R, Phillips B, Gibson F.
30 November 2023, doi.org/10.1186/s40900-023-00518-2
Cleft Lip and Palate
Patients/carers and clinicians can set joint priorities for research in cleft lip and palate
Petit-Zeman S, Cowan K.
March 2013, doi: 10.1016/j.ijporl.2012.11.035
Colorectal Cancer PSP (Germany)
Top 10 research priorities in colorectal cancer: results from the Colorectal Cancer Priority-Setting Partnership
Klotz R, Holze M, Dörr-Harim C, et al.
June 2022, doi.org/10.1007/s00432-022-04042-w
Complex Fractures
Episode 2 with Chris Bretherton and Harry Claireaux discussing Priority Setting Partnerships
Surgeons on Trial Podcast.
March 2022
Research priorities for the management of complex fractures: a UK priority setting partnership with the James Lind Alliance
Bretherton C P, Claireaux H A, Gower J, Martin S, Thornhill A, Johnson L, Silvester L, Kearney R S, Baxter M, Dixon P, Giblin V, Griffin X L, Eardley W.
November 2021, doi: 10.1136/bmjopen-2021-057198
Concussion (Canada)
Partnering With Patients, Caregivers, and Clinicians to Determine Research Priorities for Concussion
Osmond M H, Legace E, Gill P J, et al.
7th June 2023, doi:10.1001/jamanetworkopen.2023.16383
Congenital Diaphragmatic Hernia (Australia)
Top 10 research priorities for congenital diaphragmatic hernia in Australia: James Lind Alliance Priority Setting Partnership
Chiletti R, Vodopic C, Hunt E, et al.
June 2024, doi: 10.1136/archdischild-2024-327108
Congenital Heart Disease
Research priorities in children and adults with congenital heart disease: a James Lind Alliance Priority Setting Partnership
Drury N E, Herd C P, Biglino G, et al.
December 2022, doi: 10.1136/openhrt-2022-002147
COPD Flare-ups
Research priorities for exacerbations of COPD
Alqahtani J S, Aquilina J, Bafadhel M, Bolton C E, Burgoyne T, Holmes S, King J, Loots J, McCarthy J, Quint J K, Ridsdale H A, Sapey E, Upadhyaya S, Wilkinson T M A, Hurst J R.
May 14, 2021, doi.org/10.1016/S2213-2600(21)00227-7
Cystic Fibrosis Refresh
A refresh of the top 10 research priorities in cystic fibrosis
Rowbotham N J, Smith S, Elliott Z C, et al.
7 June 2023. doi: 10.1136/thorax-2023-220100
Cystic Fibrosis
Postprandial changes in gastrontestinal function and transit in cystic fibrosis assessed by Magnetic Resonance Imaging
Ng C, Dellschaft N S, Hoad C L, Gowland P, Major G, Smyth A R.
16 June 2020, doi.org/10.1016/j.jcf.2020.06.004
What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment?
Calthorpe R J, Smith S J, Rowbotham N J, Leighton P A, Davies G, Daniels T, Gathercole K, Allen L, Elliott Z C, Smyth A R.
2020, doi: 10.1136/bmjresp-2020-000601
The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and healthcare providers
Rowbotham N J, Smith S, Leighton P A, Rayner O C, Gathercole K, Elliott Z C, Nash E F, Daniels T, Duff A J A, Collins S, Chandran S, Peaple U, Hurley M N, Brownlee K, Smyth A R.
2018, doi: 10.1136/thoraxjnl-2017-210473
Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials
Davies G, Rowbotham N J, Smith S, Elliot Z C, Gathercole K, Rayner O, Leighton P A, Herbert S, Duff A J A, Chandran S, Daniels T, Nash E F, Smyth A R.
2019, doi.org/10.1016/j.jcf.2019.10.025
Do current clinical trials in cystic fibrosis match the priorities of patients and clinicans? A systematic review
Kalaitzis I S, Rowbotham N J, Smith S J, Smyth A R.
2019, doi.org/10.1016/j.jcf.2019.06.005
Gaps in the evidence for treatment decisions in cystic fibrosis: a systematic review
Rowbotham N J, Smith S, Prayle A P, Robinson K A, Smyth A R.
2019, doi.org/10.1136/thoraxjnl-2017-210858
Patient engagement to prioritise CF research: Inclusive or selective?
Rowbotham N J, Smyth A R.
2019, doi: 10.1016/j.jcf.2019.04.006
Can exercise replace airway clearance techniques in cystic fibrosis? A survey of patients and healthcare professionals
Rowbotham N J, Smith S J, Davies G, Daniels T, Elliott Z C, Gathercole K, Rayner O C, Smyth A R.
2019, doi.org/10.1016/j.jcf.2019.10.026
Using digital technology for home monitoring, adherence and self-management in cystic fibrosis: a state-of-the-art review
Calthorpe R J, Smith S, Gathercole K, Smyth A R.
2020, doi.org/ 10.1136/thoraxjnl-2019-213233
Adapting the James Lind Alliance priority setting process to better support patient participation: an example from cystic fibrosis
Rowbotham N J, Smith S J, Elliott Z C, Leighton P A, Rayner O C, Morley R, Smyth A R.
20 August 2019, doi.org/10.1186/s40900-019-0159-x
Working with the patient and clinical community to deliver clinical research in cystic fibrosis: James Lind CF Phase II
Smith S, Rowbotham N J, Smyth A R.
8 February 2018
Answering the big questions
Blog from Janet Allen.
February 2017
Degenerative Cervical Myelopathy
AO Spine RECODE-DCM: Why Prioritize Research in Degenerative Cervical Myelopathy?
Davies B M, Kwon B K, Fehlings M G, Kotter M R N.
2022, doi:10.1177/21925682211035379
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
Mowforth O D, Khan D Z, Wong M Y, et al.
2022, doi:10.1177/21925682211047546
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
Tetreault L, Mowforth O, Khan D Z, et al.
2022, doi:10.1177/21925682211062501
Improving Awareness Could Transform Outcomes in Degenerative Cervical Myelopathy [AO Spine RECODE-DCM Research Priority Number 1]
Davies B M, Mowforth O, Wood H, et al.
2022, doi:10.1177/21925682211050927
Degenerative Cervical Myelopathy: Development and Natural History [AO Spine RECODE-DCM Research Priority Number 2]
Nouri A, Tessitore E, Molliqaj G, et al.
2022, doi:10.1177/21925682211036071
Establishing Diagnostic Criteria for Degenerative Cervical Myelopathy [AO Spine RECODE-DCM Research Priority Number 3]
Hilton B, Gardner E L, Jiang Z, et al.
2022, doi:10.1177/21925682211030871
Improving Assessment of Disease Severity and Strategies for Monitoring Progression in Degenerative Cervical Myelopathy [AO Spine RECODE-DCM Research Priority Number 4]
Tetreault L, Garwood P, Gharooni A-A, et al.
2022, doi:10.1177/21925682211063854
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
Davies B M, Mowforth O, Gharooni A-A, et al.
2022, doi:10.1177/21925682211057546
Developing Peri-Operative Rehabilitation in Degenerative Cervical Myelopathy [AO Spine RECODE-DCM Research Priority Number 6]: An Unexplored Opportunity?
Boerger T F, Hyngstrom A S, Furlan J C, et al.
2022, doi:10.1177/21925682211050925
Developing Novel Therapies for Degenerative Cervical Myelopathy [AO Spine RECODE-DCM Research Priority Number 7]: Opportunities From Restorative Neurobiology
Gharooni A-A, Kwon B K, Fehlings M G, et al.
2022, doi:10.1177/21925682211052920
Establishing the Socio-Economic Impact of Degenerative Cervical Myelopathy Is Fundamental to Improving Outcomes [AO Spine RECODE-DCM Research Priority Number 8]
Davies B M, Phillips R, Clarke D, et al.
2022, doi:10.1177/21925682211039835
Imaging and Electrophysiology for Degenerative Cervical Myelopathy [AO Spine RECODE-DCM Research Priority Number 9]
Martin A R, Tetreault L, Nouri A, et al.
2022, doi:10.1177/21925682211057484
Optimizing the Application of Surgery for Degenerative Cervical Myelopathy [AO Spine RECODE-DCM Research Priority Number 10]
Rodrigues-Pinto R, Montenegro T S, Davies B M, et al.
2022, doi:10.1177/21925682211062494
The AO Spine RECODE-DCM International Collaborative—Establishing the Foundations for Accelerated and Patient-Centered Innovation
Khan D Z, Hazenbiller O, Gronlund T, et al.
2022, doi:10.1177/21925682211035381
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
Davies B M, et al.
2019, doi: 10.1177/2192568219832855
Dementia
Report from the Visual Impairment and Dementia (VIDem) summit (.PDF)
March 2016
Evaluation of the Research Programme in Dementia Care (.PDF)
Health and Social Care Research and Development (HSC R&D) Division.
November 2015
Dementia priority setting partnership with the James Lind Alliance: using patient and public involvement and the evidence base to inform the research agenda
Kelly S, Lafortune L, Hart N, Cowan K, Fenton M, Brayne C.
2015, doi: 10.1093/ageing/afv143
Dementia (Canada)
Patient and Public Involvement in Identifying Dementia Research Priorities
Bethell J, Pringle D, Chambers L W, Cohen C, Commisso E, Cowan K, Fehr P, Laupacis A, Szeto P, McGilton KS.
August 2018, doi.org/10.1111/jgs.15596
Detecting Cancer Early
Top 10 priorities for detecting cancer early- things we learnt during our research
News from the NIHR Manchester Biomedical Research Centre.
December 2019
Top ten research priorities for detecting cancer early
Badrick E, Cresswell K, Ellis P.
23 September 2019, doi.org/10.1016/S2468-2667(19)30185-9
Cancer survey is one resolution worth making and not breaking
Saddleworth Independent.
19 January 2019
Type 1 Diabetes Mellitus in Adults Refresh
The top 10 priorities in adults living with type 1 diabetes in Ireland and the United Kingdom – A James Lind Alliance priority setting partnership
Newman et al
19 August 2024, doi.org/10.1111/dme.15429
Diabetes (Type 1)
The James Lind Alliance research priorities for diabetes
Oliver N, Holt R I G.
February 2019, doi.org/10.1111/dme.13917
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)?
Avari P, Reddy M, Oliver N.
February 2019, doi.org/10.1111/dme.13942
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?
Livingstone R, Boyle J G, Petrie J R.
January 2019, doi.org/10.1111/dme.13911
Is an artificial pancreas (closed-loop system) for Type 1 diabetes effective?
Boughton C K, Hovorka R.
September 2018, doi.org/10.1111/dme.13816
Is insulin pump therapy effective in Type 1 diabetes?
Pickup J C.
August 2018, doi.org/10.1111/dme.13793
Does funded research reflect the priorities of people living with type 1 diabetes? A secondary analysis of research questions
Boddy K, Cowan K, Gibson A, Britten N.
2017; doi: 10.1136/bmjopen-2017-016540
Missed opportunities for impact in patient and carer involvement: a mixed methods case study of research priority setting
Snow R, Crocker J C, Crowe S.
2015, doi: 10.1186/s40900-015-0007-6
Setting research priorities for Type 1 diabetes
Gadsby R, Snow R, Daly A C, Crowe S, Matyka K, Hall B, Petrie J.
October 2012, doi: 10.1111/j.1464-5491.2012.03755.x
Diabetes (Type 2)
Improving understanding of type 2 diabetes remission: research recommendations from Diabetes UK's 2019 remission workshop
Hopkins M, Andrews R, Salem V, Taylor R, le Roux C W, Robertson E, Burns E.
July 2020, doi.org/10.1111/dme.14358
Diabetic peripheral neuropathy in people with type 2 diabetes: too little too late
Javed S, Hayat T, Menon L, Alam U, Malik R A.
December 2019, doi.org/10.1111/dme.14194
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?
England C Y, Andrews R C.
December 2019, doi.org/10.1111/dme.14217
Transforming mental well-being for people with diabetes: research recommendations from Diabetes UK's 2019 Diabetes and Mental Well-Being Workshop
Wylie T A F, Shah C, Connor R, Farmer A J, Ismail K, Millar B, Morris A, Reynolds R M, Robertson E, Swindell R, Warren E, Holt R I G.
June 2019, doi.org/10.1111/dme.14048
How do we identify people at high risk of Type 2 diabetes and help prevent the condition from developing?
Fagg J, Valabhji J.
November 2018, doi.org/10.1111/dme.13867
Can type 2 diabetes be reversed and how can this best be achieved? James Lind Alliance research priority number one
Taylor R, Barnes A.
October 2018, doi.org/10.1111/dme.13851
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?
Dyson P, McArdle P, Mellor D, Guess N.
September 2018, doi.org/10.1111/dme.13826
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
Finer S, Robb P, Cowan K, Daly A, Shah K, Farmer A.
March 2018, doi.org/10.1111/dme.13613
Top ten research priorities for type 2 diabetes: results from the Diabetes UK–James Lind Alliance Priority Setting Partnership
Finer S, Robb P, Cowan K, Daly A, Robertson E, Farmer A.
29 October 2017, doi.org/10.1016/S2213-8587(17)30324-8
Diabetes and Pregnancy
Steering the course of research: Putting women with diabetes in the driving seat
Blog by Caroline Schmutz.
28 June 2021
The top 10 research priorities in diabetes and pregnancy according to women, support networks and healthcare professionals
Ayman G, Strachan J A, 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 J E, Morris A, Murphy H R, O’Brien J, Schmutz C, Shah K, Singal A S, Strachan M W J, Cowan K and Knight M.
6 May 2021, doi.org/10.1111/dme.14588
Help prioritise diabetes and pregnancy research
News from the Nuffield Department of Population Health.
3 July 2019
Digital Technology for Adolescents and Young Persons with Inflammatory Bowel Disease
Top 10 research priorities for digital technology for adolescents and young persons with inflammatory bowel disease: Results of a James Lind Alliance Priority Setting Partnership
Narula P, Gasparetto M, Wong C, et al.
4th January 2024, doi.org/10.1002/jpn3.12105
Digital Technology for Mental Health
Identifying research priorities for digital technology in mental health care: results of the James Lind Alliance Priority Setting Partnership
Hollis C, Sampson S, Simons L, Davies E B, Churchill R, Betton V, Butler D, Chapman K, Easton K, Gronlund T A, Kabir T, Rawsthorne M, Rye E, Tomlin A.
August 2018, doi.org/10.1016/S2215-0366(18)30296-7
Diverticular Disease
Helen West, Public Patient Involvement & Engagement Officer at Guts UK, talks about the Diverticular Disease PSP
Can I Butt In? Podcast.
June 2024
Eating Disorders (Canada)
Cocreating research priorities for anorexia nervosa: The Canadian Eating Disorder Priority Setting Partnership
Obeid N, McVey G, Seale E, Preskow W, Norris M L.
February 2020, doi.org/10.1002/eat.23234
Eating Disorders (Netherlands)
Top 10 research priorities for eating disorders
van Furth E F, van der Meer A, Cowan K.
August 2016, doi: 10.1016/S2215-0366(16)30147-X
Eczema
Eczema in children: uncertainties addressed
NIHR Evidence Collection.
March 2024, doi: 10.3310/nihrevidence_62438
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
Batchelor J M, Ridd M J, Clarke T, Ahmed A, Cox M, Crowe S, Howard M, Lawton S, McPhee M, Rani A, Ravenscroft J C, Roberts A, Thomas K S.
March 2013, doi: 10.1111/bjd.12040
Elbow Conditions
Elbow conditions: research priorities setting in partnership with the James Lind Alliance
Singh H P, Chong H H, Raval P, et al.
November 2022, doi: 10.1136/bmjopen-2022-062177
Electronic Cigarettes
UK Research Priorities for Electronic Cigarettes: A James Lind Alliance Priority Setting Partnership
Hunter A, Ross L, Gronlund T, Cooper S.
17 November 2020, doi.org/10.3390/ijerph17228500
Emergency Medicine Refresh
Refreshing the emergency medicine research priorities
Cottey L, Shanahan T A G, Gronlund T, on behalf of the James Lind Alliance (JLA) Emergency Medicine (EM) Priority Setting Partnership (PSP) Refresh Steering Group, et al.
September 2023, doi.org/10.1136/emermed-2022-213019
Emergency Medicine
An Emergency Medicine Research Priority Setting Partnership to establish the top 10 research priorities in emergency medicine
Smith J, Keating L, Flowerdew L, O'Brien R, McIntyre S, Morley R, Carley S.
4 May 2017, doi: 10.1136/emermed-2017-206745
Here’s the top 10 (and more) research priorities in EM. James Lind & St.Emlyn’s
Blog by Simon Carley.
January 2017
Setting research priorities in emergency care
25 January 2016
Nurses' opinions matter and they should be heard: How you can help influence research.
December 2015.
James Lind and the RCEM needs you (and you, and you)
Blog by Simon Carley.
October 2015
The emergency medicine research priority setting partnership
Smith J E, Morley R.
29 September 2015, doi: 10.1136/emermed-2015-205353
Patient and Public Involvement: Resource for Researchers
Blog by NIHR CLAHRC YH
August 2015
Endometriosis
Research priorities for endometriosis differ among patients, clinicians, and researchers
Brady P C, Horne A W, Saunders P T K, Thomas A M, Missmer S A, Farland L V.
3 March 2020, doi.org/10.1016/j.ajog.2020.02.022
Association between genetic polymorphisms and endometrial cancer risk: a systematic review
Bafligil C, Thompson D J, Lophatananon A, et al.
17 February 2020, doi:10.1136/jmedgenet-2019-106529
Feel our pain: Endometriosis sufferers call for better support, faster diagnosis and more effective treatment for the agonising condition
Downey A.
19 May 2017
Women call for more studies to understand causes, find potential cure for endometriosis
News Medical Life Sciences.
19 May 2017
Research News: Endometriosis research should aim to improve diagnosis and halt progression, meeting hears
Mayor S.
May 2017, doi.org/10.1136/bmj.j2438
Top ten endometriosis research priorities in the UK and Ireland
Horne A W, Saunders P T K, Abokhrais I M, Hogg L.
18 May 2017, doi: 10.1016/S0140-6736(17)31344-2
Epilepsy (Canada)
Canadian epilepsy priority-setting partnership: Toward a new national research agenda
Singh A, Woelfle R, Chepesiuk R, Southward C, Antflick J, Cowan K, Hum K, Ng M, Burneo JG, Suller Marti A.
May 2022, doi.org/10.1016/j.yebeh.2022.108673
Epilepsy (UK)
What the Top Ten epilepsy research priorities mean for the UK research ecosystem
Norton AC, Smeaton M, Twohig-Bennett C, Thomas RH.
10 January 2024, doi.org/10.1016/j.ebiom.2023.104919
Fibromyalgia (Canada)
A paradigm change to inform fibromyalgia research priorities by engaging patients and health care professionals
Fitzcharles M A, 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.
September 2017, 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
James Lind Alliance Priority Setting Partnership - 'Top 10' research priorities in foot and ankle surgery
Mangwani J.
March 2022
Frailty (Canada)
The Canadian Frailty Priority Setting Partnership: Research Priorities for Older Adults Living with Frailty
Bethell J, et al.
March 2019, doi:https://doi.org/10.5770/cgj.22.336
Greener Operations: Sustainable Peri-Operative Practice
The ‘Greener Operations’ James Lind Alliance Priority Setting Partnership: 18 months on
Article from Anaesthesia News.
March 2024
Reproduced with permission from the Association of Anaesthetists
Green surgery: Reducing the environmental impact of surgical care
Brighton & Sussex Medical School, Centre for Sustainable Healthcare, and UK Health Alliance on Climate Change.
November 2023
Greener Operations: a James Lind Alliance Priority Setting Partnership to define research priorities in environmentally sustainable perioperative practice through a structured consensus approach
Clayton Smith M, Narayanan H, Shelton C, et al.
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)
Top 10 research priorities in head and neck cancer: Results of an Alberta priority setting partnership of patients, caregivers, family members, and clinicians
Lechelt L A, Rieger J M, Cowan K, et al.
2018, https://doi.org/10.1002/hed.24998
Heart Surgery
Identifying research priorities in cardiac surgery: a report from the James Lind Alliance Priority Setting Partnership in adult heart surgery
Lai F Y, Abbasciano R G, Tabberer B, Kumar T, Murphy G J.
2020, doi: 10.1136/bmjopen-2020-038001
Improving cardiac surgery benefits through key research
Hospital Healthcare Europe.
12 November 2019
Improving cardiac surgery benefits through key research
Press release from NIHR Leicester Biomedical Research Centre.
11 November 2019
Determining the Future of Cardiac Surgery Research
Murphy G, Kumar T, Lai, F, Page S, Tabberer B.
January 2019
Hidradenitis Suppurativa
The Hidradenitis Suppurativa Priority Setting Partnership
Ingram J R, Abbott R, Ghazavi M, Alexandroff A B, McPhee M, Burton T, Clarke T.
December 2014, doi: 10.1111/bjd.13163
Hip and Knee Replacement for Osteoarthritis
Gathering treatment uncertainties from patients/carers using different methods: evaluation report for Oxford Biomedical Research Centre
Crowe S, Regan S.
July 2014
Hyperacusis
Identifying and prioritising unanswered research questions for people with hyperacusis: James Lind Alliance Hyperacusis Priority Setting Partnership
Fackrell K, Stratmann L, Kennedy V, et al.
November 2019, doi: 10.1136/bmjopen-2019-032178
Top ten hyperacusis research priorities in the UK
Fackrell K, Stratmann L, Gronlund T A, Hoare D J.
February 2019, doi.org/10.1016/S0140-6736(18)32616-3
Hyperemesis Gravidarum
A patient–clinician James Lind Alliance partnership to identify research priorities for hyperemesis gravidarum
Dean C R, Bierma H, Clarke R, et al.
January 2021, doi: 10.1136/bmjopen-2020-041254
Hyperhidrosis
Setting research priorities for management and treatment of hyperhidrosis: the results of the James Lind Alliance Priority Setting Partnership
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.
June 2022, doi.org/10.1111/ced.15122
Researchers set sights on permanent cure for excessive sweating
Press Release from De Montfort University.
March 2019
Hypertension (Canada)
Hypertension management research priorities from patients, caregivers, and healthcare providers: A report from the Hypertension Canada Priority Setting Partnership Group
Khan N, Bacon S L, Khan S, Perlmutter S, Gerlinksy C, Dermer M, Johnson L, Alves F, McLean D, Laupacis A, Pui M, Berg A, Flowitt F.
September 2017, doi: 10.1111/jch.13091
Idiopathic Intracranial Hypertension (IIH)
What are the research priorities for idiopathic intracranial hypertension? A priority setting partnership between patients and healthcare professionals
Mollan S, Hemmings K, Herd C P, et al.
2019, doi: 10.1136/bmjopen-2018-026573
Inflammatory Bowel Disease
Are we addressing the top 10 research priorities in IBD?
Geldof J, LeBlanc J F, Lucaciu L, Segal J, Lees C W, Hart A.
November 2020, doi: 10.1136/flgastro-2020-101579
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
Lomer M C, Hart A L, Verjee A, Daly A, Solomon J, McLaughlin J.
August 2017, doi.org/10.1111/jhn.12494
What are the Top 10 research questions in the treatment of Inflammatory Bowel Disease? A Priority Setting Partnership with the James Lind Alliance
Hart A L, Lomer M, Verjee A, Kemp K, Faiz O, Daly A, Solomon J, McLaughlin J.
February 2017, doi: 10.1093/ecco-jcc/jjw144
Intensive Care
Priorities for Future Intensive Care Research in the UK: Results of a James Lind Alliance Priority Setting Partnership
Reay H, Arulkumaran N, Brett S J.
October 2014, doi: 10.1177/175114371401500405
The James Lind Alliance Intensive Care Research Priority Setting Partnership: why another research prioritisation exercise?!
Brett S, Reay H.
July 2014, doi: 10.1177/175114371301400305
Irritable Bowel Syndrome
Top 10 research priorities for irritable bowel syndrome: results of a James Lind Alliance priority setting partnership
Black C J, McKenzie Y A, Scofield-Marlowe M, Setter P, Tarpey M, Ford A C.
March 2023, doi.org/10.1016/S2468-1253(23)00072-9
Juvenile Idiopathic Arthritis (Netherlands)
Research agenda setting with children with juvenile idiopathic arthritis: Lessons learned
Aussems K, Schoemaker C G, Verwoerd A, Ambrust W, Cowan K, Dedding C.
August 2021, doi.org/10.1111/cch.12904
Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis
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 C G.
April 2021, doi:10.1186/s12969-021-00540-2
If patients are the true north, patient-centeredness should guide research
Schanberg L E, Mullins C D.
November 2018, doi.org/10.1038/s41584-018-0129-y
Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method: a study protocol
Schoemaker C G, Armbrust W, Swart J F, Vastert S J, Loosdregt J van, Verwoerd A, Whiting C, Cowan K, Olsder W, Versluis E, Vliet R van, Fernhout M J, Bookelman S L, Cappon J, Berg J M van den, Schatorje E, Hissink Muller P C E, Kamphuis S, de Boer J, Lelieveld O T H M, Net J van der, Jongsma K R, Rensen A van, Dedding C, Wulffraat N M.
September 2018, doi.org/10.1186/s12969-018-0276-3
Kidney Cancer (Canada)
Setting Research Priorities for Kidney Cancer
Jones J M, Bhatt J, Avery J, Laupacis A, Cowan K, Basappa NS, Basiuk J, Canil C, Al-Asaaed S, Heng D Y C, Wood L, Stacey D, Kollmannsberger C, Jewett M A S.
May 2017, doi: 10.1016/j.eururo.2017.04.011
The kidney cancer research priority-setting partnership: Identifying the top 10 research priorities as defined by patients, caregivers, and expert clinicians
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, doi.org/10.5489/cuaj.4590
Kidney Transplant
Defining Priorities for Future Research: Results of the UK Kidney Transplant Priority Setting Partnership
Knight S R, Metcalfe L, O'Donoghue K, Ball S T, Beale A, Beale W, Hilton R, Hodkinson K, Lipkin G, Loud F, Marson L P, Morris P J.
October 2016, doi:10.1371/journal.pone.0162136
Learning Difficulties (Scotland)
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’
Lim A K, Rhodes S, Cowan K, et al.
2019, doi.org/10.1136/bmjopen-2018-028780
Learning difficulties: the 10 research priorities
TES Magazine.
September 2018
Youngsters with learning difficulties help researchers
STV News.
September 2018
Young people with learning difficulties identify areas to improve lives
MailOnline.
September 2018
Young people with learning difficulties identify areas to improve lives
Belfast Telegraph Digital.
September 2018
Youngsters with support needs help set research priorities
The National.
September 2018
Lichen Sclerosus
Future research priorities for lichen sclerosus - results of a James Lind Alliance Priority Setting Partnership
Simpson R C, Cooper S M, Kirtschig G, Larsen S, Lawton S, McPhee M, Murphy R, Nunns D, Rees S, Tarpey M, Thomas K S, The Lichen Sclerosus Priority Setting Partnership Steering Group.
November 2018, doi.org/10.1111/bjd.17447
Liver Glycogen Storage Disease (International)
Research priorities for liver glycogen storage disease: an international priority setting partnership with the James Lind Alliance
Peeks F, Boonstra W F, Baere L, Carøe C, Casswall T, Cohen D, Cowan K, Ferrecchia I, Ferriani A, Gimbert C, Landgren M, Maldonado N L, McMillan J, Nemeth A, Seidita N, Stachelhaus‐Theimer U, Weinstein DA, Derks T.
October 2019, doi:10.1002/jimd.12178
Priority Setting Partnerships für Leberglykogenosen
PDF reproduced with kind permission of the PSP.
Major Trauma
Research priorities for the management of major trauma: an international priority setting partnership with the James Lind Alliance
Bretherton C P, Hirst R, Gacaferi H On Behalf of The Major Trauma Priority Setting Partnership Steering Group, et al.
May 2024, doi: 10.1136/bmjopen-2023-083450
ME/CFS
Research priorities for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): the results of a James Lind alliance priority setting exercise
Tyson S, Staley K, Gronlund T A, 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.
September 2022, DOI: 10.1080/21641846.2022.2124775
Medically Not Yet Explained Symptoms
Identifying the top research priorities in medically not yet explained symptoms (MNYES): a James Lind Alliance priority setting partnership
Van der Feltz-Cornelis C M, Sweetman J, Edwards M, et al.
July 2022, doi: 10.1136/bmjopen-2022-061263
Mental Health in Children and Young People
Reflections and recommendations on co-producing with young people with past mental health difficulties
UCL Public Engagement Blog.
July 2020
Youth mental health research priorities: Right People, Right Questions #YoungPeople MHQ
Blog by Pooky Knightsmith.
November 2018
Mesothelioma
Research Priorities in Mesothelioma: A James Lind Alliance Priority Setting Partnership
Stephens R J, Whiting C, Cowan K.
June 2015, doi: 10.1016/j.lungcan.2015.05.021
Metastatic Breast Cancer (Canada)
Research priorities in metastatic breast cancer: A James Lind Alliance Priority Setting Partnership
Nixon N A, Simmons C, Lemieux J, Verma S.
September 2019, doi.org/10.1111/tbj.13525
Mild to Moderate Hearing Loss
Research priorities for mild-to-moderate hearing loss in adults
Henshaw H, Sharkey L, Crowe D, Ferguson M.
November 2015, doi: 10.1016/S0140-6736(15)01048-X
Top 10 priorities for research on mild-moderate hearing loss
Blog by Chapman S.
September 2015
Miscarriage
Priorities for research in miscarriage: a priority setting partnership between people affected by miscarriage and professionals following the James Lind Alliance methodology
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.
July 2017, doi: 10.1136/bmjopen-2017-016571
Miscarriage researcher makes plea for women's help
Mailonline.
November 2015
Multiple Conditions in Later Life
Priorities for research in multiple conditions in later life (multi-morbidity): findings from a James Lind Alliance Priority Setting Partnership
Parker S G, Corner L, Laing K, Nestor G, Craig D, Collerton J, Frith J, Roberts H C, Sayer A A, Allan L M, Robinson L, Cowan K.
May 2019, doi.org/10.1093/ageing/afz014
Multiple Sclerosis
Finding the top 10 research priorities
Research Matters.January/February 2014. Reproduced with kind permission of the Multiple Sclerosis Society
Myeloma (Canada)
Moving from research priorities to clinical research: implementing the results of a priority setting partnership on multiple myeloma
Fowler S, McLaughlin L, Bridges S, Robichaud M, Ridgway B, Reece D E, Song K, Dalrymple L, Sully R,Nason S, Rowland S, MacDonald T, Paine W, Reiman A.
August 2022, doi.org/10.1016/S2152-2650(22)00518-3
PB1955: THE AGENDA FOR FUTURE MULTIPLE MYELOMA RESEARCH ACCORDING TO PATIENTS, CAREGIVERS, AND CLINICIANS
Fowler S, McLaughlin L, Bridges S, Robichaud M, Ridgway B, Reece D E, Song K, Dalrymple L, Sully R, Nason S, Rowland S, MacDonald T, Paine W, Reiman A.
June 2022, DOI: 10.1097/01.HS9.0000850656.08545.1f
Keeping Up with KT: The Science and Practice of Patient Engagement and Setting Research Priorities Webinar
March 2022
Patient, Caregiver, and Healthcare Provider Priorities for Future Multiple Myeloma Research: Results of a James Lind Alliance Priority Setting Partnership
Reinman A, Fowler S, McLaughlin L, Bridges S, Robichard M, Ridgway B, Reece DE, Song K W, Dalrymple L, Sully R,Nason S, Rowland S, MacDonald T, Paine W.
November 2021, doi.org/10.1182/blood-2021-145096
The future of myeloma research in Canada and beyond: results of a James Lind Alliance priority setting partnership
Fowler S, McLaughlin L, Bridges S, Robichaud M, Ridgway B, Reece D, Song K, Dalrymple L, Sully R,Nason S, Rowland S, MacDonald T, Paine W, Reiman A.
November 2021, doi.org/10.1111/bjh.17946
Giving Patients And Caregivers A Voice In Setting Research Priorities
News article. August 2020
Setting the next stage for cancer research in Canada
Horizon Research Services e-newsletter. June 2020
Neuro-oncology
Diagnosing and treating brain tumours: reflections on the latest Cochrane evidence
Blog by Helen Bulbeck. March 2021
UK patients and healthcare professionals work together to put brain and spinal cord tumours at the top of the clinical research agenda
MacDonald L. 2015
Nutritional Screening and Malnutrition
Priority setting for adult malnutrition and nutritional screening in healthcare: a James Lind Alliance
Jones D J, Baldwin C, Lal S, et al.
December 2019, doi.org/10.1111/jhn.12722
Obstructive Sleep Apnea (Saskatchewan, Canada)
Top 10 research priorities for people with obstructive sleep apnoea, families and clinicians: James Lind Alliance Priority Setting Partnership
Goodridge D, Duncan B, Cowan K, et al.
January 2022,doi: 10.1136/thoraxjnl-2021-218154
Occupational Therapy
The opportunities and challenges of implementing our research priorities
Watson J, Cox D L, Cowan K, Ford S.
April 2022, doi.org/10.1177/03080226221089850
Identifying research priorities for occupational therapy in the UK: A James Lind Alliance Priority Setting Partnership
Watson J, Cowan K, Spring H, Mac Donnell J, Unstead-Joss R.
June 2021, doi.org/10.1177%2F03080226211026557
Article on the Royal College of Occupational Therapists website
14 October 2019
The mission to determine the top ten research priorities for occupational therapy
Markham S.
August 2019
What makes you go ‘hmm…?’ about occupational therapy in the UK?
Blog by Alexander Smith.
August 2019
Defining the unanswered questions of occupational therapy: the importance of engaging with diverse audiences
Blog by Jenny MacDonnell.
March 2019
Article about the PSP
February 2019
Paediatric Hospital Care (Canada)
Patient, Caregiver, and Clinician Participation in Prioritization of Research Questions in Pediatric Hospital Medicine
Gill P J, Bayliss A, Sozer A, et al.
April 2022, doi:10.1001/jamanetworkopen.2022.9085
Improving Outcomes for Hospitalized Children—Include the Voice of the Patient and Caregiver When Prioritizing for Implementation
Srivastava R, Wilson K.
April 2022, doi:10.1001/jamanetworkopen.2022.9093
Paediatric Intensive Care Nutrition
Research Priorities for Pediatric Intensive Care Nutrition Within the United Kingdom: A National Institute of Health Research James Lind Alliance Priority Setting Partnership
O’Connor G, Marino L V, Tume L N, Stewart A, Gates S, Lanigan J, Bangalore H, Kinsella S.
March 2022, doi: 10.1097/CCE.0000000000000649
Paediatric Lower Limb Surgery
Research priorities in children requiring elective surgery for conditions affecting the lower limbs: a James Lind Alliance Priority Setting Partnership
Vella-Baldacchino M, Perry D C, Roposch A, et al.
December 2019, doi: 10.1136/bmjopen-2019-033233
Palliative and end of life care
Does current UK research address priorities in palliative and end-of-life-care? (.PDF)
Todd-Fordham F, Candy B, McMillan S, Best S.
2016.
Beyond the questions - thematic analysis of the first survey of the Palliative and end of life care PSP (.PDF)
Nelson, A.
October 2016.
Identifying palliative and end-of-life care research priorities: a UK approach to consult end users
Smith R, Best S, Noble B.
January 2015
Research priority setting in palliative and end of life care: the James Lind Alliance approach consulting patients, carers and clinicians
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.
May 2015, doi.org/10.1136/bmjspcare-2014-000838.3
The Palliative and end of life care Priority Setting Partnership (PeolcPSP): determining evidence uncertainties from the perspective of the end user of research
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.
March 2014, doi:10.1136/bmjspcare-2014-000654.117
Pancreatic Cancer (Germany)
Top ten research priorities for pancreatic cancer therapy
Klotz R, Doerr-Harim C, Ahmed A, Tjaden C, Tarpey M, Diener M K, et al.
June 2020, doi.org/10.1016/S1470-2045(20)30179-0
Pancreatitis
The top 10 research priorities for pancreatitis: findings from a James Lind Alliance priority setting partnership
Mitra V, Munnelly S, Grammatikopoulos T, Mole D, Hopper A, Ryan B, et al.
June 2023, doi.org/10.1016/S2468-1253(23)00151-6
Parkinson's
Priority setting partnership to identify the top 10 research priorities for the management of Parkinson's disease
Deane K H O, Flaherty H, Daley D, Pascoe R, Penhale B, Clarke C E, Sackley C, Storey S.
December 2014,doi: 10.1136/bmjopen-2014-006434
Patient Safety in Primary Care
Identifying primary care patient safety research priorities in the UK: a James Lind Alliance Priority Setting Partnership
Morris R L, Stocks S J, Alam R, Taylor S,Rolfe C, Glover S W, Whitcombe J, Campbell S M.
February 2018, doi: 10.1136/bmjopen-2017-020870
What are patient and clinician priorities for research in primary care patient safety?
Blog by Rebecca Morris. December 2016
Welcome to the Revolution
Blog by Richard Morley. February 2016
Pediatric Cancer (Canada)
Social media use when engaging research users in setting the priorities for research
Sivaratnam S, Chee-A-Tow A, Jibb L.
November 2020
Pediatric Inflammatory Bowel Disease (Netherlands)
The top 10 research priorities for inflammatory bowel disease in children and young adults: results of a James Lind Alliance Priority Setting Partnership
Jagt J Z, Rheenen P F van, Thoma S M A, Gower J, Reimering-Hartgerink P B, Wielen H J H L van der, et al.
May 2023, doi.org/10.1016/S2468-1253(23)00140-1
Pemphigus and Pemphigoid
The top 10 research priorities for the treatment of bullous pemphigoid, mucous membrane pemphigoid and pemphigus vulgaris in the UK: results of a James Lind Alliance Priority Setting Partnership
Harman K E, Barha J, Chalmers J R, Dart J K G, Davies I, Ellis P, Grindlay D, Hampton P J, Hill S, Hockey S, Lloyd-Lavery A, McPhee M, Murphy R, Rauz S, Setterfield J F, Thompson I, Westmoreland M, Waistell C.
May 2023, doi: 10.1093/bjd/ljad140
Pernicious Anaemia
Research priorities in pernicious anaemia: James Lind Alliance Priority Setting Partnership
Staley K, Ahmadi K R, Carter K, et al.
August 2022, doi: 10.1136/bmjopen-2022-065166
Pessary use for Prolapse
Shared research priorities for pessary use in women with prolapse: results from a James Lind Alliance Priority Setting Partnership
Lough K, Hagen S, McClurg D, et al.
April 2018, doi: 10.1136/bmjopen-2017-021276
Physiotherapy
Identifying Priorities for Physiotherapy Research in the UK: the James Lind Alliance Physiotherapy Priority Setting Partnership
Rankin G, Summers R, Cowan K, Barker K, Button K, Carroll S P, Fashanu B, Moran F, O'Neill B, ten Hove R, Waterfield J, Westwater-Wood S, Wellwood I.
July 2019, doi.org/10.1016/j.physio.2019.07.006
Post Mastectomy Breast Reconstruction (Canada)
Identifying the top research priorities in postmastectomy breast cancer reconstruction: a James Lind Alliance priority setting partnership
Zhong T, Mahajan A, Cowan K, et al.
August 2021, doi: 10.1136/bmjopen-2020-047589
Pressure Ulcers
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
Madden M, Morley R.
April 2016, doi: 10.1186/s40900-016-0026-y
List of 12 priorities for pressure ulcer study identified by UK researchers
Ford S. May 2013
Alienating evidence based medicine vs. innovative medical device marketing: A report on the evidence debate at a Wounds Conference
Madden M.
June 2012, doi: 10.1016/j.socscimed.2012.02.026
My turn and my right
Madden M
December 2012, doi: 10.1016/S0140-6736(12)62154-0
Wounds Research for Patient Benefit: A five year programme of research in wound care
Lamb K, Stubbs N, Dumville J, Cullum N, O'Meara S.
August 2016, doi: 10.3310/pgfar04130
Preterm Birth
Top research priorities for preterm birth: results of a prioritisation partnership between people affected by preterm birth and healthcare professionals
Oliver S, Uhm S, Duley L, et al.
2019, doi:10.1186/s12884-019-2654-3
Top 15 UK research priorities for preterm birth
Duley L,Uhm S, Oliver S.
June 2014, doi: 10.1016/S0140-6736(14)60989-2
Setting Preterm Birth Research Priorities With Multiple Professions and Service Users in the UK
Uhm S, Alderdice F, Brady I, Chambers B, Chivers Z, Crowe S, David A L, Deshpande S, Gale C, Gyte G, James C P,Duley L, McNeill J, Shennan A, Turner M A, Oliver S.
October 2014, doi:10.1136/archdischild-2014-307384.349
Identifying research priorities in preterm birth (.PDF)
Petit-Zeman S,Uhm S.
2012
Progressive Pulmonary Fibrosis
Changing priorities for pulmonary fibrosis: the patient will see you now!
Fabbri L, Jones S.
March 2021, doi: 10.1136/thoraxjnl-2020-216616
Prostate Cancer
The James Lind Alliance approach to priority setting for prostate cancer research: an integrative methodology based on patient and clinician participation
Lophatananon A, TynedaleBiscoe S, Malcolm, S, Rippon H J, Holmes K, Firkins L A, Fenton M, Crowe S, Stewart-Brown S, Gnanapragasam V J, Muir K R.
September 2011, doi: 10.1111/j.1464-410X.2011.10609.x
Where are the clinicians when you need them
Halls E.
April 2010, doi: 10.1136/bmj.c1845
PROTECT PSP (Priorities for Future Research on Reducing and Stopping Psychiatric Medicines)
Identifying priorities for future research on reducing and stopping psychiatric medication: results of a James Lind Alliance priority-setting partnership
Boland M, Higgins A, Beecher C, et al.
November 2024, doi: 10.1136/bmjopen-2024-088266
Priorities for future research on reducing and stopping psychiatric medicines using a James Lind Alliance priority setting partnership: The PROTECT study protocol [version 1; peer review: 2 approved]
Boland M, Higgins A, Beecher C, et al.
November 2022, doi: 10.12688/hrbopenres.13649.1
Psoriasis
Research priorities and identification of a health-service delivery model for psoriasis from the UK Psoriasis Priority Setting Partnership
Ismail D,McAteer H, Majeed-Ariss R, McPhee M, Griffiths C E M, Young H S.
August 2020, doi: 10.1111/ced.14407
The top 10 research priorities for psoriasis in the U.K.: results of a James Lind Alliance psoriasis Priority Setting Partnership
Majeed-Ariss R, McPhee M, McAteer H, Griffiths C E M, Young H.
June 2019, doi: 10.1111/bjd.18209
Developing a Protocol to identify and prioritise research questions for psoriasis: A James Lind Alliance Priority Setting Partnership
Majeed-Ariss R, McPhee M, Bundy C, Griffiths C E M, Young H, et al.
September 2017, doi: 10.1111/bjd.15992
Psoriatic Arthritis
The top 10 research priorities in psoriatic arthritis: a James Lind Alliance Priority Setting Partnership
Hailey L, Bundy C, Burstow H, Chandler D, Cowper R, Helliwell P, Joannes L, Kelly A, Kennedy B, Kinsella S, McAteer H, Mukherjee S, Packham J, Wise E, Young H, Coates L C.
December 2022, doi: 10.1093/rheumatology/keac676
Episode 1 - Some background on the project, Episode 2 - A GP's perspective on being part of the project, Episode 3 - Patient perspective on being part of the project, Episode 4 - A dual perspective from a healthcare professional who is also a patient
Podcasts on the PsA HQ podcast channel.
April 2022
Quality Use of Medicines in People Living with Dementia (Australia)
Consumer and Healthcare Professional Led Priority Setting for Quality Use of Medicines in People with Dementia: Gathering Unanswered Research Questions
Reeve E, et al.
December 2022, doi: 10.3233/JAD-220827
Revision Knee Replacement
Top ten research priorities for problematic knee arthroplasty
Mathews J A, Kalson N S, Tarrant P M, Toms A D.
August 2020, doi.org/10.1302/0301-620X.102B9.BJJ-2020-0203.R1
Safe Care for Adults with Complex Health Needs
Making care safer for adults with complex health needs
News Report by Justine Alford.
January 2019
Setting research priorities - the people's choice
Blog by Tessa Richards.
January 2019
Schizophrenia
Schizophrenia: Patients' research priorities get funded
Lloyd K, White J, Chalmers I.
July 2012, doi: 10.1038/487432b
Democratizing clinical research
June 2011, doi: 10.1038/474277a
Identifying uncertainties about the effects of treatments for schizophrenia
Lloyd K, Rose D,Fenton M.
June 2006, doi: 10.1080/09638230600731586
Scoliosis
Personal reflections on the James Lind Alliance priority setting partnership for scoliosis management
Cadwgan J.
June 2018
Seniors' Health (Alberta)
Identifying what matters most for the health of older adults in Alberta: results from a James Lind Alliance Research Priority Setting Partnership (.PDF)
Hanson H M, Cowan K, Wagg A.
May 2021, doi: 10.9778/cmajo.20190225
Sepsis
Top ten research priorities for sepsis research: UK James Lind Alliance priority setting partnership
McPeake J, Oakes M, Graham C, Ahmad N, Lone N, Connolly B, et al.
September 2024, doi: 10.1016/S2213-2600(24)00298-4
Sexual Violence
Top 10 priorities for Sexual Violence and Abuse Research: Findings of the James Lind Alliance Sexual Violence Priority Setting Partnership
Varese F, White C,Longden E, et al.
February 2023, doi: 10.1136/bmjopen-2022-062961
Sickle Cell Genomics
Genomics England podcast with John James and Suzannah Kinsella discussing the Sickle Cell Genomics PSP.
June 2023
Sight Loss and Vision
Report from the Visual Impairment and Dementia (VIDem) summit (.PDF)
March 2016
Vision 2020 UK hosts seminar for funders of eye research
Fight for Sight.
October 2015
The Sight Loss and Vision Priority Setting Partnership (SLV-PSP): overview and results of the research prioritisation survey process
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.
July 2014, doi: 10.1136/bmjopen-2014-004905
Can 3D facial imaging improve patient management in disfiguring eye disease?
Deane-Pratt A.August 2015
Patient and public participation shapes biomedical research and access priorities in eye health
McNeil R.
December 2014
Skin Cancer Surgery
Surgical Priority Setting Partnership Steering Group, The top 10 research priorities for skin cancer surgery in the UK: results of a James Lind Alliance Priority Setting Partnership
Brown A C, Earp E M, Veitch D, Wernham A.
January 2023, doi.org/10.1093/bjd/ljac014
Smell and Taste Disorders
Establishing UK research priorities in smell and taste disorders: A James Lind Alliance Priority Setting Partnership
Philpott C M, Espehana A, Garden M, Ta N, Gadi N, Kumaresan K , Maru D, Stafford L D, Bleasdale N, Boak D.
September 2022, doi.org/10.1111/coa.13985
Research Priorities for Smell Disorders Revealed
Article on the University of East Anglia website.
May 2022
Spinal Cord Injury
Top ten research priorities for spinal cord injury: the methodology and results of a British priority setting partnership
vanMiddendorp J J, Allison H C, Ahuja S, Bracher D, Dyson C, Fairbank J, Gall A, Glover A, Gray L, ElMasri W, Uttridge A, Cowan K.
November 2015, doi: 10.1038/sc.2015.199
Top ten research priorities for spinal cord injury
vanMiddendorp J J, Allison H, Cowan K.
December 2014,doi: 10.1016/S1474-4422(14)70253-4
Spinal Cord Injury (Sweden)
Knowledge translation gaps that need to be bridged to enhance life for people with spinal cord injury
Melin J, Axwalter E, Åhrén G, Lundgren-Nilsson Å, Sunnerhagen K S, Wangdell J.
April 2024, doi.org/10.1038/s41394-024-00634-5
Research priorities to enhance life for people with spinal cord injury: a Swedish priority setting partnership
Melin J, Axwalter E, Åhrén G, Sunnerhagen K S, Lundgren-Nilsson Å, Wangdell J.
July 2023, doi.org/10.1038/s41393-023-00913-2
Stillbirth
Research Priorities for Stillbirth: Process Overview and Results from the UK Stillbirth Priority Setting Partnership
Heazell A E P, Whitworth M K, Whitcombe J, Glover S W, Bevan C, Brewin J, Calderwood C, Canter A, Jessop F, Johnson G, Martin I, Metcalf L.
September 2015,doi: 10.1002/uog.15738
Stroke
Development of a new model to engage patients and clinicians in setting research priorities
Pollock A, St George B, Fenton M, Crowe S, Firkins L.
January 2014, doi: 10.1177/1355819613500665
Top 10 research priorities relating to life after stroke - consensus from stroke survivors, caregivers, and health professionals
Pollock A, St George B,Fenton M,Firkins L.
April 2014,doi: 10.1111/j.1747-4949.2012.00942.x
Top ten research priorities relating to life after stroke
Pollock A, St George B, Fenton M, Firkins L.
March 2012, doi: 10.1016/S1474-4422(12)70029-7
Stroke survivors have their say on research priorities
Petit-Zeman S.
November 2011
Surgery for Common Shoulder Problems
Research priorities for shoulder surgery: results of the 2015 James Lind Alliance patient and clinician priority setting partnership
Rangan A, Upadhyaya S, Regan S, Toye F, Rees J.
April 2016, doi:10.1136/bmjopen-2015-010412
Teenage and Young Adult Cancer
Reporting the whole story: Analysis of the ‘out-of-scope’ questions from the James Lind Alliance Teenage and Young Adult Cancer Priority Setting Partnership Survey
Gibson, F, Fern, L A, Phillips, B, et al.
July 2021, doi.org/10.1111/hex.13276
An evaluation of young people’s involvement in the ‘Teenage and Young Adult Cancer’ James Lind Alliance Priority Setting Partnership (.PDF)
Staley K.
May 2020
More mental health research needed for young people with cancer
News from Great Ormond Street Hospital for Children.
August 2019
More needs to be done to improve mental health of young people with cancer
News from the University of Surrey.
August 2019
Research priorities for young people with cancer: a UK priority setting partnership with the James Lind Alliance
Aldiss S, Fern L A, Phillips R S, et al.
August 2019,doi: 10.1136/bmjopen-2018-028119
Top 10 Research Priorities for Teenage and Young Adult Cancer in the United Kingdom: Prioritising Need for Psychosocial Research
Aldiss S, Fern L A, Phillips B, Gibson F.
November 2018
Tinnitus
Identifying and prioritizing unmet research questions for people with tinnitus: the James Lind Alliance Tinnitus Priority Setting Partnership (.PDF)
Hall D, Mohamad N, Firkins L, Fenton M, Stockdale D. 2013,doi: 10.4155/cli.12.129
Traumatic Brachial Plexus Injuries
Establishing the top 10 priorities for future research in traumatic brachial plexus injuries – A James Lind Alliance Priority Setting Partnership
Motreja K, Wilcox M, Quick T, Brown B.
December 2023
Urinary Incontinence
Case study: A patient-clinician collaboration that identified and prioritised evidence gaps and stimulated research development
Buckley B S, Grant A M,Glazener C M A.
May 2013, doi: 10.1016/j.clinepi.2011.03.016
Prioritizing research: Patients, carers, and clinicians working together to identify and prioritize important clinical uncertainties in urinary incontinence
Buckley B S, Grant A M, Tincello D G, Wagg A S, Firkins L.
June 2010, doi: 10.1002/nau.20816
Working together to identify research questions
Buckley B, Grant A M,Firkins L, Greene A C, Frankau J.
January 2007
Vision Loss (Australia)
Key priorities to tackle one of Australia's leading causes of blindness
Kate Burke
24th September 2024
New focus on Inherited Retinal Disease podcast with Emily Shepard, Dr Meredith Prain and Dr Eden Robertson
23 September 2024
Vitiligo
Future research into the treatment of vitiligo: where should our priorities lie? Results of the vitiligo priority setting partnership
Eleftheriadou V, Whitton M E, Gawkrodger D J, Batchelor J, Corne J, Lamb B, Ersser S, Ravenscroft J, Thomas K S.
March 2011, doi: 10.1111/j.1365-2133.2010.10160.x
Top Ten uncertainties for the treatment of Vitiligo
Eleftheriadou V, Whitton M.
March 2011, Reproduced with kind permission of the Vitiligo Society
Setting priorities and reducing uncertainties for people with skin disease (SPRUSD)
Lushey C.
March 2009, Reproduced with kind permission of the Vitiligo Society
Womb Cancer
Working together to shape the endometrial cancer research agenda: The top ten unanswered research questions
Wan Y L, Beverley-Stevenson R, Carlisle D, Clarke S, Edmonson R J, Glover S, Holland J, Hughes C, Kitchener H C, Kitson S, Miles T, Morley R, Morrison J, Nelson L, Powell M, Sadler L, Tomlinson A, Tylko-Hill K, Whitcombe J, Crosbie E J.
September 2016, doi:10.1016/j.ygyno.2016.08.333
Articles from Related Priority Setting Exercise
Autosomal Dominant Polycystic Kidney Disease
Research priorities for autosomal dominant polycystic kidney disease: a UK priority setting partnership
Harris T, Bridges H R, Brown W D, et al.
June 2022, doi: 10.1136/bmjopen-2021-055780
Dialysis priority setting in Canada
Setting Research Priorities for Patients on or Nearing Dialysis
Manns B, Hemmelgarn B, Lillie E, Crowe S, Cyr A, Gladish M, Large C, Silverman H, Toth B, Wolfs W, Laupacis A.
May 2014, doi: 10.2215/CJN.01610214
Dystrophic Epidermolysis Bullosa priority setting in Spain
Current dystrophic epidermolysis bullosa research does not match research needs perceived by patients and clinicians
Davila-Seijo P, Hernandez-Martin A, Morcillo-Makow E, Rajan C, Garcia-Doval I.
November 2014, doi: 10.1016/j.jaad.2014.05.038
Prioritization of therapy uncertainties in Dystrophic Epidermolysis Bullosa: where should research direct to? An example of priority setting partnership in very rare disorders
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.
April 2013, doi: 10.1186/1750-1172-8-61
Epilepsy 2009 priority setting
Epilepsy treatment priorities:answering the questions that matter
Hughes E G, Thomas R H.
June 2017, doi: 10.1136/jnnp-2016-315135
Identifying and prioritising epilepsy treatment uncertainties
Thomas R H, Hammond C L,Bodger O G, Rees M I, Smith P E M.
June 2010, doi: 10.1136/jnnp.2009.192716
Healthcare Associated infections
Top research priorities in healthcare-associated infection in the UK
Wilson P, et al.
August 2019, doi: 10.1016/j.jhin.2019.08.013
Inflammatory Bowel Disease (Australia)
Consumer-Clinician Codesign to Identify Research Priorities for IBD
INSPIRE Magazine Issue 25L International Collaboration for Global Impact.
October 2022
Prioritising Recruitment in Randomised Trials (PRioRiTy)
Stakeholder engagement at the centre of priority setting: evolving priorities for much more
Blog by Tarang Sharma.
September 2018
Identifying trial recruitment uncertainties using a James Lind Alliance Priority Setting Partnership - the PRioRiTy (Prioritising Recruitment in Randomised Trials) study
Healy P, Galvin S, Williamson P R, Treweek S, Whiting C, Maeso B, Bray C, Brocklehurst P, Clarke Moloney M,Douiri A, Gamble C, Gardner H R, Mitchell D, Stewart D, Jordan J, O'Donnell M, Clarke M, Pavitt S H, Woodford Guegan E,Blatch-Jones A, Smith V, Reay H, Devane D.
March 2018, doi: 10.1186/s13063-018-2544-4
Who attended the priority setting workshop
Blog by Wendy Mitchell.
December 2016
Prioritising Retention in Randomised Trials (PRioRiTy II)
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) Study
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.
October 2019, doi.org/10.1186/s13063-019-3687-7
Retention to clinical trials: how can we keep participants involved?
Blog by Katie Gilles and Derek Stewart.
May 2018
Methods of Rapid Reviews (PrioRiTy III)
Sharing space at the research table: exploring public and patient involvement in a methodology priority setting partnership
Burke N N, Stewart D, Tierney T, et al.
May 2023, doi.org/10.1186/s40900-023-00438-1
Priority III: Top 10 rapid review methodology research priorities identified using a James Lind Alliance Priority Setting Partnership
Beecher C, Toomey E, Maeso B, Whiting C, Stewart D C, Worrall A, Elliott J, Smith M, Tierney T, Blackwood B, Maguire T, Kampman M, Ling B, Gill C, Healy P, Houghton C, Booth A, Garritty C, Thomas J, Tricco A C, Burke N N, Keenan C, Devane D.
November 2022, doi.org/10.1016/j.jclinepi.2022.08.002
What are the most important unanswered research questions on rapid review methodology? A James Lind Alliance research methodology Priority Setting Partnership: the Priority III study protocol [version 2; peer review: 1 approved, 3 approved with reservations]
Beecher C, Toomey E, Maeso B, et al.
November 2021, doi.org/10.12688/hrbopenres.13321.2
Non-alcohol-related Liver and Gallbladder Disorders
Top research priorities in liver and gallbladder disorders in the UK
Gurusamy K S, Walmsley M, Davidson B R, et al.
March 2019,doi: 10.1136/bmjopen-2018-025045
Vascular Conditions
Research Priorities for Carotid Conditions: results of the UK Vascular James Lind Alliance Priority Setting Process
Luo X, Nortley M, Long J, Gronlund T, Bulbulia R, Halliday A, Howard D P J, on behalf of theV SGBI Carotid Special Interest Group/James Lind Alliance Priority Setting Partnership.
April 2023, doi.org/10.54522/jvsgbi.2023.071
Research priorities for vascular wounds: results of the Vascular Society GBI/James Lind Alliance Priority Setting Process
Long J, Lathan R, Sidapra M, Gronlund T, Chetter I C, on behalf of the Vascular Society of Great Britain and Ireland Wounds Special Interest Group.
May 2022, doi.org/10.54522/jvsgbi.2022.027
Research priorities for lower limb amputation in patients with vascular disease
Bosanquet D C, Nandhra S, Wong K H F, Long J, Chetter I, Hinchliffe R J on behalf of The Vascular Society of Great Britain and Ireland Amputation Special Interest Group James Lind Alliance Priority Setting Partnership.
November 2021, doi: 10.54522/jvsgbi.2021.001