Publications

2015

Dudley L, Gamble C, Preston J, Buck D, EPIC Patient Advisory Group, Hanley B, Williamson P, Young B. (2015) What difference does patient and public involvement make and what are its pathways to impact? Qualitative study of patients and researchers from a cohort of randomised clinical trials. PLOS One 10(6): e0128817.

Gamble C, Dudley L, Allam A, Bell P, Buck D, Goodare H, Hanley B, Preston J, Walker A, Williamson PR, Young B. (2015) An evidence base to optimise methods for involving patient and public contributors in clinical trials: a mixed-methods study. Health Services and Delivery Research, 3 (39).

Staley, K. (2015)  ‘Is it worth doing?’ Measuring the impact of patient and public involvement in research. Research Involvement and Engagement, 1, 6.

2014

Gamble C, Dudley L, Allam A, et al. (2014) Patient and public involvement in the early stages of clinical trial development: a systematic cohort investigation. BMJ Open, 4:e005234.

INVOLVE (2014) Guidance on the use of social media to actively involve people in research.
Eastleigh: INVOLVE.

INVOLVE (2014) Examples of the use of social media for active public involvement. Eastleigh: INVOLVE.

McKenzie A and Hanley B. (2014) Planning for consumer and community participation in health and medical research. A practical guide for health and medical researchers. Perth: The University of Western Australia and the Telethon Institute for Child Health Research.

South A, Hanley B, Vale C.  (2014) A series of three films about patient and public involvement in research for the MRC Clinical Trials Unit. UK: MRC Clinical Trials Unit.


2013

Hanley B. (2013) The User Involvement in Voluntary Organisations Shared Learning Group – Online resource centre.

INVOLVE (2013) Examples of public involvement in research funding applications. Eastleigh: INVOLVE.

South A, Hanley B, Vale C, Burdett S. (2013) A series of seven films for the MRC Clinical Trials Unit. UK: MRC Clinical Trials Unit.

Staley K. (2013) A series of case studies illustrating the impact of service user and care involvement on research. MHRN: London.

Staley K. (2013) Lay REC members: Patient or public? Journal of Medical Ethics, 39, 780-782.

Staley K. (2013) There is no paradox with PPI in research. Journal of Medical Ethics, 39, 186-187.

Staley K (ongoing) Summaries of the literature discussing the impact of involvement in research and best practice in involvement. Online databases. INVOLVE: Eastleigh.


2012

Staley K, Buckland SA, Hayes H, and Tarpey M. (2012) ‘The missing links’: understanding how context and mechanism influence the impact of public involvement in research. Health Expectations, 17, 755-764.

Staley K, Kabir T and Szmukler G. (2012) Service users as collaborators in mental health research: less stick, more carrot. Psychological Medicine, 43(6), 1121-5.

Staley K. (2012) An evaluation of service user involvement in studies adopted by the Mental Health Research Network. MHRN: London.

TwoCan Associates (2012) Developing training and support. Online resource. INVOLVE: Eastleigh.

Vale C, Thompson L, Murphy C, Forcat S and Hanley B. (2012) Involvement of consumers in studies run by the Medical Research Council (MRC) Clinical Trials Unit: Results of a survey. Trials, 13:9.

Vale C, Tierney J, Spera N, Whelan A, Nightingale A and Hanley B. (2012) Evaluation of patient involvement in a systematic review and meta-analysis of individual patient data in cervical cancer treatment. Systematic Reviews, 1: 23. (doi:10.1186/2046-4053-1-23)

Vale C, Fitzgibbon J, Hanley B, Muir D, Murphy C, Nelson A, Stephens R and Young B. (2012) Public involvement in clinical trials: Supplement to the briefing notes for researchers. INVOLVE: Eastleigh.


2011

Staley, K. (2011) Collaborate and Succeed: An evaluation of the COMPASS Masterclass in consumer involvement in research. NCRI: London.

TwoCan Associates (2011) Evaluation of the ‘User Involvement in Local Diabetes Care’ project. Diabetes UK: London.


2010

TwoCan Associates (2010) Turning the pyramid upside down: examples of public involvement in social care research. INVOLVE: Eastleigh.

TwoCan Associates for the UKCRC and NCRI (2010) Patient and public involvement (PPI) in research groups – Guidance For Chairs.

Vale C, Nightingale A, Spera N, Whelan A, Hanley B, Tierney JF. (2010) Late complications from chemoradiotherapy for cervical cancer: reflections from cervical cancer survivors 10 years after the national cancer institute alert. Clinical Oncology, 22(7): 588-9.


2009

Staley K. (2009) Exploring Impact: Public involvement in NHS, public health and social care research. INVOLVE, Eastleigh.

TwoCan Associates (2009) An evaluation of the process and impact of patient and public involvement in the advisory groups of the UK Clinical Research Collaboration. Final Report. UKCRC: London.

TwoCan Associates (2009) A critical assessment of the development of patient and public involvement in the UK Clinical Research Collaboration. UKCRC: London.


2008

TwoCan Associates (2008) Getting it right for service users and carers, getting it right for research: How to decide whether to help researchers find people to take part in research. TwoCan Associates: Hove.

TwoCan Associates (2008) Scoping research priority setting (and the presence of PPI in priority setting) with UK clinical research organisations and funders. The James Lind Alliance: Oxford.


2007

McKenzie A and Hanley B. (2009) Consumer and Community Participation in Health and Medical Research. A practical guide for health and medical research organisations. The University of Western Australia and The Telethon Institute for Child Health Research: Australia.

Buckland S et al. (2007) Public Information Pack. How to get actively involved in NHS, public health and social care research. Booklet 4: Jargon Buster. INVOLVE: Eastleigh.


2006

Staley K and Minogue V. (2006) User involvement leads to more ethically sound research. Clinical Ethics, 1(2): 95-100.

Hanley B and Staley K. (2006) Yesterday’s Women – the story of RAGE. Macmillan: London.

Staley K and Hanley B. Incapacity benefit and employment – The experiences of people with MS or arthritis. Report for Arthritis Care and the MS Society.


2005

Hanley B & Staley K. User and Carer Involvement: Sharing our Experience. LMCA: London.

Hanley B & Staley K. User and Carer Involvement: A Good Practice Guide. LMCA: London.

Staley K & Hanley B. User and Carer Involvement: How to Develop a Strategy. LMCA: London.

Hanley B. (for the Toronto Seminar Group) Research as empowerment? Joseph Rowntree Foundation: York.

Cavill S, Hanley B, et al. Stories that can change your life: communities challenging health inequalities. Department of Health: London.

TwoCan Associates: Finding out about the priorities of users and making them count: A report for Macmillan Cancer Relief.


2004

Hanley B et al. Involving the public in NHS, public health and social care research: Briefing Notes for Researchers. INVOLVE: Eastleigh, Hampshire.


2002

Pickin C, Popay J, Staley K, Bruce N, Jones C and Gowman N. (2002) Promoting organisational capacity to engage with active lay communities: A model to support organisational change for health. Journal of Health Services Research, 7(1):34-42.

Staley K. Voices, values and health. Involving the public in moral decisions. In: Hidden Assets: Values and decision-making in the NHS. (2002) Editors: Bill New and Julia Neuberger. King’s Fund: London.


2001

Cayton H & Hanley B. Improving research through consumer involvement. In: Baker M & Kirk S eds. Research & Development for the NHS Radcliffe Medical Press.

Entwistle V & Hanley B. ‘Involving Consumers’ . In Pencheon D, Guest C, Melzer D & Muir Gray J (eds.) Oxford Handbook of Public Health Practice. Oxford University Press: Oxford.

Hanley B, Truesdale A, Elbourne D, King A and Chalmers I. Involving consumers in designing, conducting and interpreting randomised controlled trials: questionnaire survey. BMJ, 322: 519-523.

Staley K. Giving your genes to Biobank UK: Questions to ask. GeneWatch UK: Buxton, UK.