References (Section 11)

References for “Getting the right research done is everybody’s business”:

1 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 Technology Assessment Report 2004;8(15).

2 NIHR Guy’s and St. Thomas’ and King’s College London’s Biomedical Research Centre. Involving users in the research process: a ‘how to’ guide for researchers. Version 1, April 2010. Accessed 17th January 2012.

3 Cartwright J, Crowe S. Patient and public involvement toolkit. London: Wiley-Blackwell and BMJI Books, 2011.

4 European Science Foundation/EMRC. Implementation of medical research in clinical practice – a growing challenge. Strasbourg: ESF, 2011.  Accessed 2nd March 2017.

5 Hanley B, Truesdale A, King A, et al. Involving consumers in designing, conducting, and interpreting randomised controlled trials: questionnaire survey. BMJ 2001;322:519-23.

6 Koops L, Lindley RI. Thrombolysis for acute ischaemic stroke: consumer involvement in design of new randomised controlled trial. BMJ 2002;325:415-7.

7 Staley K. Exploring impact: public involvement in NHS, public health and social care research. Eastleigh: INVOLVE, 2009. Available from: www.invo.org.uk.

8 Petit-Zeman S, Firkins L, Scadding JW. The James Lind Alliance: tackling research mismatches. Lancet 2010;376:667-9.

9 Patient Partner Project. An EU programme ‘Identifying the needs for patients partnering in clinical research’

10 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 Expectations 2003;6:189-97.

11 Dixon-Woods M, Agarwal S, Young B et al. Integrative approaches to qualitative and quantitative evidence. NHS Health Development Agency, 2004.

12 Kushner R. Breast cancer: a personal history and an investigative report. New York: Harcourt Brace Jovanovitch, 1975.

13 Lerner BH. The breast cancer wars: hope, fear, and the pursuit of a cure in twentieth-century America. New York: Oxford University Press, 2003.

14 Institute of Medical Ethics Working Party on the ethical implications of AIDS: AIDS, ethics, and clinical trials. BMJ 1992;305:699-701.

15 Thornton H. The patient’s role in research. [Paper given at The Lancet ‘Challenge of Breast Cancer’ Conference, Brugge, April 1994.] In: Health Committee Third Report. Breast cancer services. Volume II. Minutes of evidence and appendices. London: HMSO, July 1995, 112-4.

16 Concorde Coordinating Committee. Concorde: MRC/ANRS randomised double-blind controlled trial of immediate and deferred zidovudine in symptom-free HIV infection. Lancet 1994;343:871-81.

17 Perehudoff K, Alves TL. Patient and consumer organisations at the European Medicines Agency: financial disclosure and transparency. Amsterdam: Health Action International, 2010.

18 Herxheimer A. Relationships between the pharmaceutical industry and patients’ organisations. BMJ 2003;326:1208-10.

19 Consumers’ Association. Who’s injecting the cash? Which? 2003, April, pp24-25.

20 Koops L, Lindley RI. Thrombolysis for acute ischaemic stroke: consumer involvement in design of new randomised controlled trial. BMJ 2002;325:415-7.

21 Donovan J, Mills N, Smith M, et al for the ProtecT Study Group. Quality improvement report: improving design and conduct of randomised trials by embedding them in qualitative research: ProtecT (prostate testing for cancer and treatment) study. BMJ 2002;325:766-70.