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What research means to patients, and the importance of partnership with practitioners in research

Published online by Cambridge University Press:  01 June 2009

Hazel Thornton
Hazel Thornton*
Affiliation:
Department of Health Sciences, University of Leicester, Leicester, UK
*
Correspondence to: Hazel Thornton, “Saionara”, 31 Regent Street, Rowhedge, Colchester, CO5 7EA, UK. E-mail: [email protected]
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Abstract

A brief general and personal history of research conducted in partnership with patients is outlined in order to substantiate the beneficial effect of this method in improving the quality of research and to illustrate the importance to patients of testing treatments in a manner that takes account of the outcomes they seek. Examples of two early initiatives, Radiotherapy Action Group Exposure (RAGE) and the Consumers' Advisory Group for Clinical Trials (CAG-CT), are used to demonstrate what can be accomplished by committed groups of patients working with policy makers and practitioners to improve the quality and provision of treatments for breast cancer.

Keywords

CAGCT, RAGEhistory of active patient involvement in researchpatient responsibility in researchtrust and altruism in researcheducation of public about researchadequacy of patient informationshared decision-makinglong-term effects of radiotherapyUK DCIS Trial
Type
Original Article
Information
Journal of Radiotherapy in Practice , Volume 8 , Issue 2 , June 2009 , pp. 79 - 85
Copyright
Copyright © Cambridge University Press 2009

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References

Protocol of the UK Randomised Trial for the Management of Screen-detected Ductal Carcinoma (DCIS) of the Breast. December 1989. UKCCCR. Prepared by the Working Party of the BCTCS (Breast Cancer Trials Coordinating Sub-committee) of the UKCCCR (UK Co-ordinating Committee on Cancer Research).Google Scholar
Thornton, HM.Breast cancer trials: a patient's viewpoint. Lancet 1992; 339: 44–45.CrossRefGoogle ScholarPubMed
Acceptance letter from Dr Imogen Evans, The Lancet, dated 27th November 1991.Google Scholar
Baum, M.New approach for recruitment into randomized controlled trials. Lancet 1993; 341: 812–813CrossRefGoogle Scholar
Thornton, H.A ladyplan for trial recruitment?—Everyone's business!. Lancet 1993; 341: 795–796CrossRefGoogle ScholarPubMed
Meeting organized by the Faculty of Law, University of Trento, Italy, “Sperimentare conference” 29–30 November 2007.Google Scholar
Thornton, H.“The luck of the draw”. Nurs Times 1992; 88(37): 58.Google Scholar
Thornton, H.A sacrifice for others? Ethical dilemmas surrounding the UK randomised trial for the management of screen-detected ductal carcinoma in situ of the breast. Prof Nurse 1993; 8: 402–404.Google ScholarPubMed
“Preventive radiotherapy for early breast cancer?”. Radiother Today 1992; 58(661): 25–26.Google Scholar
NHS Breast Screening Programme Annual Review 2007. ISBN 1-84463-048-6. Available on URL: http://www.cancerscreening.nhs.uk / breastscreen /publications /2007review.htmlGoogle Scholar
Lerner, BH.The Breast cancer wars. fear, hope, and the pursuit of a cure in twentieth century America. Oxford University Press: New York, 2003.Google Scholar
Fotaki, M, Boyd, A, Smith, L, McDonald, R, Roland, M, Sheaff, R et al. Patient Choice and the Organisation and Delivery of Health Services: Scoping Review on Patient Choice and the Organisation and Delivery of Health Services for the National Co-ordinating Centre for NHS Service Delivery and Organisation R&D (NCCSDO), 2005.Google Scholar
RAGE (Radiotherapy Action Group Exposure). http://www.rage.webeden.co.uk/Google Scholar
HMSO. Health Committee Third Report. Breast Cancer Services Volumes I and II. 6 July 1995.Google Scholar
Thornton, H.The patient's role in research. (Paper given at The Lancet “Challenge of Breast Cancer” Conference, Brugge, April 1994.) Health Committee Third Report. Breast Cancer Services. Volume II. Minutes of Evidence and Appendices. London HMSO July 1995. pp. 112–114.Google Scholar
Thornton, H.Informed consent. In: Early Breast Cancer, from screening to multidisciplinary management, 2nd edn. Querci della Rovere G, Warren R, Benson JR (eds). Taylor & Francis Medical Books, 2006.Google Scholar
Evans, I, Thornton, H, Chalmers, I. Testing treatments: better research for better healthcare. British Library 2006. See: www.jameslindlibrary.orgGoogle Scholar
Fallowfield, L, Jenkins, V, Brennan, C, Moynihan, C, Souhami, R.Attitudes of patients to randomized clinical trials of cancer therapy. Eur J Cancer 1998; 34(10): 1554–1559.CrossRefGoogle ScholarPubMed
Thornton, H.Patients and health professionals working together to improve clinical research: where are we going? Eur J Cancer 2006; 42: 2454–2458.CrossRefGoogle ScholarPubMed
Minerva, BMJ.(2000) 320.p. 724 (Fertility and Sterility 2000; 73: 292–299).CrossRefGoogle Scholar
National Cancer Research Network—Breast Cancer Trials Report. November 2002 NHS Research and Development (Cancer). Project No. NCP/D18. 1995 Jo Marsden, Jane Bradburn. Patient and clinician collaboration in the design of a national randomised breast cancer trial. Health Expect 2004; 7(1): 6–17.CrossRefGoogle Scholar
Wright, D, Corner, J, Hopkinson, J, Foster, C.Listening to the views of people affected by cancer about cancer research: an example of participatory research in setting the cancer research agenda. Health Expect 2006; 9(1): 3–12.CrossRefGoogle Scholar
Thornton, H.“Today's patient: passive or involved?” Lancet 2000; 354: siv48CrossRefGoogle Scholar
Hanley, B, Truesdale, A, King, A, Elbourne, D, Chalmers, I.Involving consumers in designing, conducting, and interpreting randomised controlled trials: questionnaire survey. BMJ 2001; 322: 519–523.CrossRefGoogle ScholarPubMed
Oliver, S, Clarke-Jones, L, Rees, R et al. Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach. Health Technol Assess 2004; 8: 1–148.CrossRefGoogle ScholarPubMed
Telford, R, Boote, JD, Cooper, CL.What does it mean to involve consumers successfully in NHS research? A consensus study. Health Expect 2004; 7: 209–220.CrossRefGoogle ScholarPubMed
Bastian, H.Consumer and researcher collaboration in trials: filling the gaps. Clin Trials 2005; 2: 3–4.CrossRefGoogle ScholarPubMed
Crawford, M, Rutter, D, Thelwell, S. User Involvement in change management: A review of the literature, 2003. NCC SDO (National Co-ordinating Centre Service Delivery and Organisation) (And other SDO ‘user involvement’ reports on SDO website, www.sdo.lshtm.ac.ukGoogle Scholar
Davies, C, Wetherell, M, Barnett, E, Seymour-Smith, S.Opening the Box. Evaluating the Citizens Council of NICE. Report prepared for the National Co-ordinating Centre for Research Methodology, NHS Research and Development Programme. The Open University, 2005CrossRefGoogle Scholar
Oliver, S, Armes, D, Gyte, G.Evaluation of public influence on the NHS Health Technology Assessment Programme. Executive Summary. Prepared by the SSRU (Social Science Research Unit), Institute of Education, University of London. June 2006Google Scholar
UKCRC Patient and Public website: http://www.ukcrn.org.uk/index/patients.htmlGoogle Scholar
NHS National Library for Health Patient and Public Involvement Specialist Library. http://www.library.nhs.uk/ppi/Google Scholar
NCRI/NCRN Radiotherapy Clinical Studies Group. http://www.ncrn.org.uk/csg/groups.asp?groupID=13Google Scholar
NCRI/NCRN portfolio of trials http://www.ncrn.org.uk/Portfolio/index.htmGoogle Scholar
Thornton, H, Edwards, A, Elwyn, G.Evolving the multiple roles of ‘patients’ in health-care research: reflections after involvement in a trial of shared-decision-making. Health Expect 2003; 6: 189–197.CrossRefGoogle Scholar