Involving lay and professional stakeholders in the development of a research intervention for the DEPICTED Study

Health Expectations

Volumn 14, Issue 3, 2011, Pages 250-260

  Lowes, Lesley ^a   Robling, Michael R ^a   Bennert, Kristina ^b   Crawley, Charlotte ^a   Hambly, Helen ^c   Hawthorne, Kamila ^a   Gregory, John W ^d  

^a CARDIFF UNIVERSITY   (United Kingdom)

^b UNIVERSITY OF BRISTOL   (United Kingdom)

^c NORTH BRISTOL NHS TRUST   (United Kingdom)

^d CARDIFF UNIVERSITY SCHOOL OF MEDICINE   (United Kingdom)

Author keywords

Complex research intervention; Paediatric diabetes; Service user involvement; Teenagers and parents; The DEPICTED study

Indexed keywords

ADOLESCENT; ARTICLE; CHILD; HUMAN; HUMAN RELATION; INSULIN DEPENDENT DIABETES MELLITUS; INTERPERSONAL COMMUNICATION; METHODOLOGY; PARENT; PATIENT PARTICIPATION; PSYCHOLOGICAL ASPECT;

ADOLESCENT; CHILD; COMMUNICATION; DIABETES MELLITUS, TYPE 1; HUMANS; PARENTS; PATIENT PARTICIPATION; RESEARCH DESIGN; RESEARCHER-SUBJECT RELATIONS;

EID: 80051575445     PISSN: 13696513     EISSN: 13697625     Source Type: Journal    
DOI: 10.1111/j.1369-7625.2010.00625.x     Document Type: Article

References (30)

1. Hampson S, Skinner T, Hart J et al. Effects of educational and psychosocial interventions in adolescents with diabetes mellitus: a systematic review. Health Technology Assessment., 2001; 5: 1-79.
2. 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., 2004; 8: 1-148.
3. Buckley B, Grant AM, Firkins L, Greene AC, Frankau J. Working together to identify research questions. Continence, 2007; 1: 76-81.
4. Craig P, Dieppe P, Macintyre S et al. Developing and evaluating complex interventions: the new Medical Research Council guidance. British Medical Journal, 2008; 337: 979-983.
5. Hambly H, Robling M, Crowne E, Hood K, Gregory JW, and The DEPICTED Study Team. Communication skills of health-care professionals in paediatric diabetes services. Diabetic Medicine, 2009; 26: 502-509.
6. The DEPICTED Study Team. The DEPICTED Trial Protocol 2008. Available at.
7. Miller W, Rollnick S. Motivational Interviewing: Preparing People to Change, 2nd edn. New York: Guilford Press, 2002.
8. NIHR Health Technology Assessment Programme. Planning patient and public involvement in HTA. 2008. Available at.
9. TwoCan Associates. An Evaluation of the Process and Impact of Patient and Public Involvement in the Advisory Groups of the UK Clinical Research Collaboration: Final Report. London: UK Clinical Research Collaboration, 2009.
10. Kirby P. A Guide to Actively Involving Young People in Research: for researcher commissioners, and managers. INVOLVE. 2004 September 2004:33
11. Entwistle VA, Renfrew MJ, Yearley S, Forrester J, Lamont T. Lay perspectives: advantages for health research. British Medical Journal, 1998; 316: 463-466.
12. Hanley B, Truesdale A, King A, Elbourne D, Chalmers I. Involving consumers in designing, conducting, and interpreting randomised controlled trials: questionnaire survey. British Medical Journal, 2001; 322: 519-523.
13. Chambers R, O'Brien LM, Linnell S, Sharp S. Why don't health researchers report consumer involvement? Quality in Primary Care, 2004; 12: 151-157.
14. Telford R, Boote J, Cooper C. What dos it mean to involve consumers successfully in NHS research? A consensus study. Health Expectations, 2004; 7: 209-220.
15. Barber R, Boote J, Cooper C. Involving consumers successfully in NHS research: a national survey. Health Expectations, 2007; 10: 380-391.
16. Hanley B for the Toronto Seminar Group. Research as Empowerment? Report of a series of seminars organised by the Toronto Group. York: Toronto Group, 2005
17. Minogue V, Boness J, Brown A, Girdlestone J. The impact of service user involvement in research. International Journal of Quality Assurance, 2005; 18: 103-112.
18. Boote J, Telford R, Cooper C. Consumer involvement in health research: a review and research agenda. Health Policy, 2002; 61: 213-236.
19. Staniszewska S, Herron-Mars S, Mockford C. Editorial. Measuring the impact of patient and public involvement: the need for an evidence base. International Journal for Quality in Health Care, 2008; 20: 373-374.
20. Lindenmeyer A, Hearnshaw H, Sturt J, Ormerod R, Aitchison G. Assessment of the benefits of user involvement in health research from the Warwick Diabetes Care Research User Group: a qualitative case study. Health Expectations, 2007; 10: 268-277.
21. Jones J, Hunter D. Consensus methods for medical and health services research. British Medical Journal, 1995; 311: 376-380.
22. Faulkner A, Thomas P. User-led research and evidence-based medicine. British Journal of Psychiatry, 2002; 180: 1-3.
23. Telford R, Faulkner A. Learning about service user involvement in mental health research. Journal of Mental Health, 2004; 13: 549-559.
24. 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 Expectations, 2006; 9: 3-12.
25. Lockey R, Sitzia J, Gillingham T et al. Training for service user involvement in health and social care research: a study of training provision and participants' experiences (The TRUE Project). Hants: INVOLVE; 2004
26. McLaughlin H. Keeping Service User involvement in research honest. British Journal of Social Work, 2010; 40: 1591-1608.
27. Steel R. A guide to paying members of the public who are actively involved in research: for researchers and research commissioners. INVOLVE, 2003:14.
28. Grant-Pearce C, Miles I, Hills P. Mismatches in Priorities for Health Research Between Professionals and Consumers. Manchester: PREST Manchester University, 1998.
29. Lowes L, Hulatt I. Involving Service Users in Health and Social Care Research. London: Routledge, 2005.
30. Trivedi P, Wykes T. From passive subjects to equal partners: qualitative review of user involvement in research. British Journal of Psychiatry., 2002; 181: 468-472.