Patient and Public Involvement Toolkit

Patient and Public Involvement Toolkit, Cartwright J, Crowe S, Feb 2011, BMJ Books Evidence Based Toolkit Series, Wiley Blackwell 9781405199100

Now that patient and public involvement is in the mainstream of healthcare, professionals at all levels from postgraduate trainee to consultant need to understand the issues and be able to collaborate with patients on joint initiatives.

This Toolkit answers all your questions about setting up your project, and seeing it through successfully.  In the concise, easy to follow format so popular in the Toolkit series, it guides you through the process step–by–step. Continue reading

JLA approach to priority setting for prostate cancer research

The James Lind Alliance approach to priority setting for prostate cancer research: an integrative methodology based on patient and clinician participation

Lophatananon A,Tyndale-Biscoe S, Malcolm E, Rippon H,  Holmes K, Firkins L, Fenton M, Crowe S , Stewart-Brown S,  Gnanapragasam V and Muir K.

British Journal of Urology International, 2011, Vol 108, Issue 7, p 1040 – 1043

Research in many fields of medical investigation is principally researcher and
response led. The medical industry is advancing in both treatments and technologies, but the ideas and views of both patients and clinicians are often forgotten, even though these groups clearly have a shared interest in research. Patients themselves are becoming increasingly familiar with research, particularly through the internet, and with their direct experience of disease they should be an important voice when identifying research priorities.   Continue reading

The PRIME project

The PRIME project: developing a patient evidence base

Staniszewska S,  Crowe S,  Badenoch D, Edwards C , Savage J, Norman W.   Health Expectations, Vol 13, Issue 3, pages 312–322, September 20

The concept of evidence has become firmly rooted in health care, with most importance placed on the outcome of research in clinical and economic spheres. Much less emphasis is placed on the patient’s contribution to evidence which remains relatively vague, of low status and often difficult to integrate with other forms of knowledge. Continue reading


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.