PSP articles and publications

This page provides links to articles and publications about individual Priority Setting Partnerships and other related JLA activities.

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

Breathlessness

Top ten research priorities for breathlessness research: UK James Lind Alliance priority setting partnership

Evans R A, LO D K H, Reilly C C, Davies M R, Walker S, Kennington E J, et al.

November 2024, 10.1016/S2213-2600(24)00376-X

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)

Top Ten Epilepsy Research Priorities: A UK Priority Setting Partnership

Norton AC, Twohig-Bennett C, Smeaton M, Marson A, Armstrong J, Kovac A, Ashby S, Cock H, Coxon A, Dickson JM, Fearon A, Fuller A, Kinney M, Mayne A, McLaughlan T, Mitchell JW, Pardington R, Pullen A, Shankar R, Solomon J, Tittensor P, Wright S, Yandle A, Zuberi S, Cowan K, Thomas RH.

December 2024, doi.org/10.1016/j.seizure.2024.12.008

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

Food Allergy in Children 

Patients to help set the agenda for food allergy research

Press release on University of Bristol website.

December 2024

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

 Inherited Retinal Disease (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(Australia)

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 projectEpisode 2 - A GP's perspective on being part of the projectEpisode 3 - Patient perspective on being part of the projectEpisode 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

Lloyd K, White J.

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

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