Meeting the needs of non-academic users of research

‘Is academia meeting the needs of non-academic users of the results of research?’

The Lancet, published online 8 October 2012

Medical and public health researchers often assume that their work will be relevant to patients, health professionals, policy makers, the public, and other non-academic users of research. However, on the basis of the little available evidence, serious mismatches exist between what researchers do and what many non-academic users of research feel they need. Research agendas are determined by the priorities of research sponsors, academia, and academic researchers, and cannot be assumed to match the needs of non-academic users of research. Continue reading

Cochrane Collaboration

Evidence in agenda setting: new directions for the Cochrane Collaboration

This paper is a commentary on published accounts and reviews of Research Priority and Agenda Setting exercises, that can inform the future direction of priority setting Systematic Reviews in Cochrane.

The authors critique the published accounts and assess where they add to our existing knowledge and understanding of priority setting and where there are gaps.  It suggests 6 key steps for Cochrane Collaborative Review Groups to improve their research priority setting strategies.  It also gives information about the Cochrane Prioritization Methods Group that was convened in November 2011 to address these methodological issues.

This paper was published in the Journal of Clinical Epidemiology in August 2012, authors Nasser M, Welch V, Ueffing E, Crowe S, Oliver S, Carlo R.

To find out more about Cochrane, click here, for more information the Cochrane Prioritization Methods Group click here.



Eczema Priority Setting Partnership

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

J.M. Batchelor, M.J. Ridd, T. Clarke, A. Ahmed, M. Cox, S. Crowe, M. Howard, S. Lawton, M. McPhee, A. Rani, J. Ravenscroft, A. Roberts, K. Thomas      DOI: 10.1111/bjd.12040


Eczema is a common condition, yet there are uncertainties regarding many frequently used treatments. Knowing which of these uncertainties matter to patients and clinicians is important, because they are likely to have different priorities from those of researchers and funders. Continue reading

Setting Research Priorities for Type 1 Diabetes

Setting Research Priorities for Type 1 Diabetes 

Diabetic Medicine, October 2012, vol./is. 29/10(1321-1326), 0742-3071;1464-5491 (October 2012).  Gadsby R.; Snow R.; Daly A.C.; Crowe S.; Matyka K.; Hall B.; Petrie J.


Research priorities are often set by academic researchers or the pharmaceutical industry. The interests of patients, carers and clinicians may therefore be overlooked and research questions that matter may be neglected. The aims of this study were to collect uncertainties about the treatment of Type 1 diabetes from patients, carers and health professionals, and to collate and prioritize these uncertainties to develop a top 10 list of research priorities, using a structured priority-setting partnership of patients, carers, health professionals and diabetes organizations, as described by the James Lind Alliance. Continue reading

Identifying and setting priorities in Asthma

Identifying and prioritizing uncertainties: patient and clinician engagement in the identification of research questions

Elwyn G, Crowe S, Fenton M, Firkins L, Versnel J, Walker S, Cook I, Holgate S, Higgins B, Gelder C, J Eval Clin Pract , Volume 16 , 3 (June 2010) pp.627-631


To arrive at an agreed, prioritized ranking of treatment uncertainties in asthma that need further research, by developing a collaboration of patients, carers and clinicians, facilitated by the James Lind Alliance Working Partnership between Asthma UK and the British Thoracic Society. Continue reading

Priority Setting Approaches

Priority setting methods and approaches 

This overview of methods for prioritisation was written several years ago to underpin development of the James Lind Alliance (JLA) approach.

The overview considers several well known approaches to prioritisation and consensus building such as Nominal Group Technique and Delphi consultations.  Each method is summarised and the ‘pros and cons’ considered.  The final part of the paper makes the case for the methods chosen for the James Lind Alliance Priority Setting Partnerships. Click here for a link to the full paper.



Recent publications

Patient and public involvement—“A smooth sea never made a skilled sailor”

Concannon TW, Grant S, Welch V, Petkovic J, Selby J, Crowe S, Synnot A, Greer-Smith R, Mayo-Wilson E, Tambor E, Tugwell P. Practical guidance for involving stakeholders in health research. J Gen Intern Med 2019;34(3):458–63. Epub ahead of print (with supplemental materials) 10.1007/s11606-018-4738-6.

Experiences and lessons in stakeholder engagement in environmental evidence synthesis: a truly special series Haddaway and Crowe Environ Evid (2018) 7:11

‘Who Inspired My Thinking? – Sherry Arnstein’. Crowe S, Research for All, 1 (1): 143-146. DOI 10.18546/RFA.01.1.10. (2017)

Research Priority Setting in organ transplantation: a systematic review. Tong A. Sautenet B, ChapmanJR, MacDonald P, Shackel N, Crowe S, Hanson CS, Hill S, Synnot A, Craig J.  Transplant International 30(4), 327-343.

Making patient relevant clinical research a reality Crowe S, Giles C BMJ 2016; 355 doi: (Published 23 December 2016) Cite this as: BMJ 2016;355:i6627

Nephrologists’ perspectives on defining and applying patient-centered outcomes in hemodialysis. Tong A, Winkelmayer WC, Wheeler DC, Van Biesen W, Tugwell P, Manns B, Hemmelgarn, Harris T, Crowe S, Ju A, O’Lone E, Evangelidis N, Craig JC. Clinical Journal of the American Society of Nephrology [Accepted 3rd November 2016]

Determining priorities for research to improve fundamental care on hospital ward Ball Jane, Ballinger Claire, De Iongh Anya, Dall’Ora Chiara, Crowe Sally, Griffiths Peter, Research Involvement and Engagement 2016, 2:31 DOI: 10.1186/s40900-016-0045-8

Identifying the most important outcomes for systematic reviews of interventions for rhinosinusitis in adults: working with Patients, Public and Practitioners.
Hopkins C, Philpott C, Crowe S, Regan S, Degun A, Papachristou I, Schilder AG.
Rhinology. 2015 Nov 15. [Epub ahead of print] PMID: 26569006

Standardised outcomes in nephrology – Haemodialysis (SONG-HD): study protocol for establishing a core outcome set in haemodialysis
Allison Tong • Braden Manns • Brenda Hemmelgarn • David C Wheeler • Peter Tugwell • Wolfgang C Winkelmayer • Wim van Biesen • Sally Crowe • Peter G Kerr • Kevan R Polkinghorne •Kirsten Howard • Carol Pollock • Carmel M Hawley • David W Johnson • Stephen P McDonald • Martin P Gallagher • Rachel Urquhart-Secord • Jonathan C Craig Trials 08/2015; 16(1):364. DOI:10.1186/s13063-015-0895-7 • 2.12

Assessing the extent to which current clinical research is consistent with patient priorities: a scoping review using a case study in patients on or nearing dialysis. Jun M, Manns B, Laupacis A, Manns L, Rehal B, Crowe S, Hemmelgarn BR (2015). Canadian Journal of Kidney Health and Disease. Vol 2 Issue1. 2015

Missed opportunities for impact in patient and carer involvement: a mixed methods case study of research priority setting. Snow R, Crocker JC, Crowe S Research Involvement and Engagement Journal July 2015 1845655987160084

Patients’, clinicians’ and the research communities’ priorities for treatment research: there is an important mismatch. Crowe, S. Fenton, M. Hall, M. Cowan K. and Chalmers I. (2015) Research Involvement and Engagement 2015 1:2




Public Involvement

This section covers a range of resources and publications relating to public involvement in research.

You will find information about the BMJ Wiley Patient and Public Involvement toolkit, co written with Julia Cartwright, as well as a range of papers.  Also in this section are resources that have been developed with members of the public and research professionals over the years to help people involved with developing clinical research assess research proposals or develop their critical thinking skills.

Please select the resources you are interested in from the menu on the right hand side.