Close to the bench as well as at the bedside: Involving service users in all phases of translational research

Health Expectations

Volumn 15, Issue 4, 2012, Pages 389-400

  Callard, Felicity ^a   Rose, Diana ^b   Wykes, Til ^b  

^a SOUTH LONDON AND MAUDSLEY NHS FOUNDATION TRUST   (United Kingdom)

^b KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

Biomarkers; Mental health; Service user involvement; Translational research

Indexed keywords

BIOLOGICAL MARKER;

CLINICAL TRIAL (TOPIC); COOPERATION; ETHICS; HUMAN; INFORMATION DISSEMINATION; METHODOLOGY; ORGANIZATION; ORGANIZATION AND MANAGEMENT; PATIENT PARTICIPATION; PERSONNEL; REVIEW; TRANSLATIONAL RESEARCH;

BIOLOGICAL MARKERS; CLINICAL TRIALS AS TOPIC; COOPERATIVE BEHAVIOR; HUMANS; INFORMATION DISSEMINATION; ORGANIZATIONAL INNOVATION; PATIENT PARTICIPATION; RESEARCH PERSONNEL; TRANSLATIONAL MEDICAL RESEARCH;

EID: 84869033193     PISSN: 13696513     EISSN: 13697625     Source Type: Journal    
DOI: 10.1111/j.1369-7625.2011.00681.x     Document Type: Review

References (56)

1. Zerhouni E. The NIH Roadmap. Science, 2003; 302: 63-72.
2. National Institute for Health Research (NIHR). Biomedical Research Centres. n.d. Available at: http://www.nihr.ac.uk/infrastructure/Pages/infrastructure_biomedical_research_centres.aspx, accessed 7 January 2011.
3. European Commission CORDIS. Health Research Homepage. n.d. Available at: http://cordis.europa.eu/fp7/health/, accessed 5 January 2010; cited 7 January 2011.
4. Butler D. Crossing the valley of death. Nature, 2008; 453: 840-842.
5. Contopoulos-Ioannidis DG, Ntzani EE, Ioannidis JPA. Translation of highly promising basic science research into clinical applications. The American Journal of Medicine, 2003; 114: 477-484.
6. Mankoff S, Brander C, Ferrone S, Marincola F. Lost in translation: obstacles to translational medicine. Journal of Translational Medicine, 2004; 2: 14.
7. Biomarker Definitions Working Group. Biomarkers and surrogate endpoints: preferred definitions and conceptual framework. Clinical Pharmacology and Therapeutics, 2001; 69: 89-95.
8. Wehling M. Translational medicine: science or wishful thinking?Journal of Translational Medicine, 2008; 6: 31.
9. Marincola FM. Translational medicine: a two way road. Journal of Translational Medicine, 2003; 1: 1.
10. Woolf SH. The meaning of translational research and why it matters. JAMA, 2008; 299: 211-213.
11. Tansella M, Thornicroft G. Implementation science: understanding the translation of evidence into practice. The British Journal of Psychiatry, 2009; 195: 283-285.
12. Khoury MJ, Gwinn M, Yoon PW, Dowling N, Moore CA, Bradley L. The continuum of translation research in genomic medicine: how can we accelerate the appropriate integration of human genome discoveries into health care and disease prevention?Genetics in Medicine, 2007; 9: 665-674.
13. van den Hoonaard DK. Moving toward a three-way intersection in translational research: a sociological perspective. Qualitative Health Research, 2009; 19: 1783-1787.
14. Staley K. Exploring Impact: Public Involvement in NHS, Public Health and Social Care Research. Eastleigh: INVOLVE, 2009.
15. INVOLVE (National Institute for Health Research). INVOLVE database. n.d. Available at: http://www.invo.org.uk/Database.asp, accessed 24 February 2010; cited 7 January 2011.
16. Dzau VJ, Ackerly DC, Sutton-Wallace P et al. The role of academic health science systems in the transformation of medicine. Lancet, 2010; 375: 949-953.
17. Lord GM, Trembath RC. A strategy for translation. Lancet, 2007; 369: 1771-1773.
18. Read J. Psychiatric Drugs: Key Issues and Service User Perspectives. Basingstoke: Palgrave Macmillan, 2009.
19. Dabbs AV, Myers BA, McCurry KR et al. User-centered design and interactive health technologies for patients. Computers, Informatics, Nursing, 2009; 27: 175-183.
20. Shah SGS, Robinson I. User involvement in healthcare technology development and assessment: structured literature review. International Journal of Health Care Quality Assurance Incorporating Leadership in Health Services, 2006; 19: 500-515.
21. Shah SGS, Robinson I. Benefits of and barriers to involving users in medical device technology development and evaluation. International Journal of Technology Assessment in Health Care, 2007; 23: 131-137.
22. Grocott P, Weir H, Bridgelal Ram M. A model of user engagement in medical device development. International Journal of Health Care Quality Assurance Incorporating Leadership in Health Services, 2007; 20: 484-493.
23. Woodcock J. The prospects for 'personalized medicine' in drug development and drug therapy. Clinical Pharmacology and Therapeutics, 2007; 81: 164-169.
24. Thambisetty M, Simmons A, Velayudhan L et al. Association of plasma clusterin concentration with severity, pathology, and progression in Alzheimer disease. Archives of General Psychiatry, 2010; 67: 739-748.
25. Kolata G. In push to detect early Alzheimer's markers, hopes for prevention. The New York Times. August 4, 2010. Available at: http://www.nytimes.com/2010/08/05/health/05alzheimers.html, accessed 13 April 2011.
26. Wykes T, Callard F. Diagnosis, diagnosis, diagnosis: towards DSM-5. Journal of Mental Health, 2010; 19: 301-304.
27. Singh I, Rose N. Biomarkers in psychiatry. Nature, 2009; 460: 202-207.
28. Mol A. The Body Multiple: Ontology in Medical Practice. Durham and London: Duke University Press, 2002.
29. Staniszewska S, Herron-Marx S, Mockford C. 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.
30. Crawford MJ, Rutter D, Manley C et al. Systematic review of involving patients in the planning and development of health care. BMJ, 2002; 325: 1263.
31. Guarino P, Elbourne D, Carpenter J, Peduzzi P. Consumer involvement in consent document development: a multicenter cluster randomized trial to assess study participants' understanding. Clinical Trials, 2006; 3: 19-30.
32. Aymé S, Kole A, Groft S. Empowerment of patients: lessons from the rare diseases community. Lancet, 2008; 371: 2048-2051.
33. Caron-Flinterman JF, Broerse JEW, Bunders JFG. The experiential knowledge of patients: a new resource for biomedical research?Social Science & Medicine, 2005; 60: 2575-2584.
34. Callard F, Wykes T. Mental health and perceptions of biomarker research - possible effects on participation. Journal of Mental Health, 2008; 17: 1-7.
35. Caron-Flinterman JF, Broerse JEW, Bunders JFG. Patient partnership in decision-making on biomedical research: changing the network. Science Technology Human Values, 2007; 32: 339-368.
36. Baart ILMA, Abma TA. Patient participation in fundamental psychiatric genomics research: a Dutch case study. Health Expectations, 2010; doi: 10.1111/j.1369-7625.2010.00634.x.
37. Zerhouni EA. Translational research: moving discovery to practice. Clinical Pharmacology and Therapeutics, 2007; 81: 126-128.
38. Wehling M. Translational medicine: can it really facilitate the transition of research "from bench to bedside"?European Journal of Clinical Pharmacology, 2006; 62: 91-95.
39. May C, Montori VM, Mair FS. We need minimally disruptive medicine. BMJ, 2009; 339: b2803.
40. 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.
41. Abma TA, Broerse JEW. Patient participation as dialogue: setting research agendas. Health Expectations, 2010; 13: 160-173.
42. Buckley BS, Grant AM, Tincello DG, Wagg AS, Firkins L. Prioritizing research: patients, carers, and clinicians working together to identify and prioritize important clinical uncertainties in urinary incontinence. Neurourology and Urodynamics, 2010; 29: 708-714.
43. Milne JL, Magali R, Selphee T, Drummond N, Ross S. Goal achievement as a patient-generated outcome measure for stress urinary incontinence. Health Expectations., 2009; 12: 288-300.
44. Rose D, Wykes T, Farrier D, Doran A-M, Sporle T, Bogner D. What do clients think of cognitive remediation therapy? A consumer-led investigation of satisfaction and side effects. American Journal of Psychiatric Rehabilitation, 2008; 11: 181-204.
45. Gagnon M-P, Lepage-Savary D, Gagnon J et al. Introducing patient perspective in health technology assessment at the local level. BMC Health Services Research, 2009; 9: 54.
46. Ali K, Roffe C, Crome P. What patients want: consumer involvement in the design of a randomized controlled trial of routine oxygen supplementation after acute stroke. Stroke, 2006; 37: 865-871.
47. Koops L, Lindley RI. Thrombolysis for acute ischaemic stroke: consumer involvement in design of new randomised controlled trial. BMJ, 2002; 325: 415-417.
48. Langston AL, McCallum M, Campbell MK, Robertson C, Ralston SH. An integrated approach to consumer representation and involvement in a multicentre randomized controlled trial. Clinical Trials, 2005; 2: 80-87.
49. Telford R, Boote JD, Cooper CL. What does it mean to involve consumers successfully in NHS research? A consensus study. Health Expectations, 2004; 7: 209-220.
50. Fudge N, Wolfe CDA, McKevitt C. Assessing the promise of user involvement in health service development: ethnographic study. BMJ, 2008; 336: 313-317.
51. Nilsen E, Myrhaug H, Johansen M, Oliver S, Oxman A. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database of Systematic Reviews, 2006 (3): CD004563.
52. Simpson EL, House AO. Involving users in the delivery and evaluation of mental health services: systematic review. BMJ, 2002; 325: 1265.
53. Barr M, Rose D. The great ambivalence: factors likely to affect service user and public acceptability of the pharmacogenomics of antidepressant medication. Sociology of Health & Illness, 2008; 30: 944-958.
54. Nowotny H, Scott P, Gibbons M. Re-Thinking Science: Knowledge and the Public in an Age of Uncertainty. Cambridge: Polity Press, 2001.
55. Angelmar R, Berman PC. Patient empowerment and efficient health outcomes. Report 3 in: Financing Sustainable Healthcare in Europe: New Approaches for New Outcomes. February 2007. Available at: http://elibrary.zdrave.net/document/EU/Commission%20of%20the%20EC/eure324972771_en.pdf, accessed: 13 April 2011.
56. Boote J, Telford R, Cooper C. Consumer involvement in health research: a review and research agenda. Health Policy, 2002; 61: 213-236.