Addressing Deficits and Injustices: The Potential Epistemic Contributions of Patients to Research

Health Care Analysis

Volumn 25, Issue 4, 2017, Pages 386-403

  Hutchison, Katrina ^a   Rogers, Wendy ^b   Entwistle, Vikki A ^c  

^a MONASH UNIVERSITY   (Australia)

^b MACQUARIE UNIVERSITY   (Australia)

^c UNIVERSITY OF ABERDEEN   (United Kingdom)

Author keywords

Credibility; Epistemology; Experiential knowledge; Knowledge; Miranda Fricker; Patient and public involvement; Patient knowledge; Research methodology; Testimonial injustice

Indexed keywords

DRAWING; EPISTEMOLOGY; HUMAN; MEDICAL RESEARCH; THEORETICAL MODEL; COMMUNITY PARTICIPATION; KNOWLEDGE; ORGANIZATION AND MANAGEMENT; PROCEDURES; RESEARCH; RESEARCH ETHICS;

COMMUNITY PARTICIPATION; ETHICS, RESEARCH; HUMANS; KNOWLEDGE; RESEARCH;

EID: 84976318067     PISSN: 10653058     EISSN: 15733394     Source Type: Journal    
DOI: 10.1007/s10728-016-0323-5     Document Type: Article

References (53)

1. Australian Government National Health and Medical Research Council NHMRC. (2015). A12. Consumer and community participation in health and medical research. https://www.nhmrc.gov.au/book/nhmrc-funding-rules/section-nhmrc-funding-rules/a12-consumer-and-community-participation-health. Accessed November 2015.
2. Australian Government National Health and Medical Research Council NHMRC and Consumers’ Health Forum of Australia. (2005). A model framework for consumer and community participation in health and medical research. Canberra. https://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/r33.pdf. Accessed November 2015.
3. Barber, R., Boote, J. D., Parry, G. D., Cooper, C. L., Yeeles, P., & Cook, S. (2012). Can the impact of public involvement on research be evaluated? A mixed methods study. Health Expectations, 15(3), 229–241.
4. Boghossian, P. A. (1989). Content and self-knowledge. Philosophical Topics, 17(1), 5–26.
5. Boote, J., Telford, R., & Cooper, C. (2002). Consumer involvement in health research: A review and research agenda. Health Policy, 61(2), 213–236.
6. Brett, J., Staniszewska, S., Mockford, C., Herron-Marx, S., Hughes, J., Tysall, C., & Suleman, R. (2014). Mapping the impact of patient and public involvement on health and social care research: A systematic review. Health Expectations, 17(5), 637–650.
7. Brouwers, M., Kho, M. E., Browman, G. P., Cluzeau, F., Feder, G., Fervers, B., et al. (2010). Next steps consortium. AGREE II: Advancing guideline development, reporting and evaluation in healthcare. Canadian Medical Association Journal, 182(18), E839–E842.
8. Caress, A. L., Ford, A., Roberts, L., Turner, K., Ward, D., & Williamson, T. (2012). Briefing notes for researchers: Public involvement in NHS, public health and social care research. INVOLVE. http://www.invo.org.uk/wpcontent/uploads/2014/11/9938_INVOLVE_Briefing_Notes_WEB.pdf. Accessed November 2015.
9. Caron-Flinterman, J. F., Broerse, J. E., & Bunders, J. F. (2005). The experiential knowledge of patients: A new resource for biomedical research? Social Science and Medicine, 60(11), 2575–2584.
10. Chalmers, I. (1995). What do I want from health research and researchers when I am a patient? British Medical Journal, 310(6990), 1315.
11. Church, J., Saunders, D., Wanke, M., Pong, R., Spooner, C., & Dorgan, M. (2002). Citizen participation in health decision-making: Past experience and future prospects. Journal of Public Health Policy, 23(1), 12–32.
12. Conklin, A., Morris, Z., & Nolte, E. (2015). What is the evidence base for public involvement in health-care policy? Results of a systematic scoping review. Health Expectations, 18(2), 153–165.
13. Davies, G., & Burgess, J. (2004). Challenging the ‘view from nowhere’: Citizen reflections on specialist expertise in a deliberative process. Health and Place, 10(4), 349–361.
14. Dawson, A. (2010). The future of bioethics: Three dogmas and a cup of hemlock. Bioethics, 24(5), 218–225.
15. Department of Health. (2005). Research Governance Framework for Health and Social Care. p. 20. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/139565/dh_4122427.pdf. Accessed November 2015.
16. Emmerova, M., & Jirava, F. (2004). Is gulf war syndrome really a mystery? Medicine, Conflict and Survival, 20(3), 209–217.
17. Entwistle, V. A. (2009). Public involvement in health service governance and development: Questions of potential for influence. Health Expectations, 12(1), 1–3.
18. Entwistle, V. A., Renfrew, M. J., Yearley, S., Forrester, J., & Lamont, T. (1998). Lay perspectives: Advantages for health research. British Medical Journal, 316(7129), 463–466.
19. Entwistle, V. A., McCaughan, D., Watt, I. S., Birks, Y., Hall, J., Peat, M., et al. (2010). Speaking up about safety concerns: Multi-setting qualitative study of patients’ views and experiences. Quality and Safety in Health Care, 19(6), e33.
20. Fricker, M. (2007). Epistemic injustice: Power and the ethics of knowing. Oxford: Oxford University Press.
21. Gersons, B. P., & Carlier, I. V. (1992). Post-traumatic stress disorder: The history of a recent concept. The British Journal of Psychiatry, 161(6), 742–748.
22. Gronseth, G. S. (2005). Gulf war syndrome: A toxic exposure? A systematic review. Neurologic Clinics, 23(2), 523–540.
23. Knowles, S., Planner, C., Donnelly, A., & Bourke, S. Hacking into health research. BMJ Blog. http://blogs.bmj.com/bmj/2014/10/29/sarah-knowles-etal-hacking-into-health-research/. Accessed November 2015.
24. Langston, A. L., McCallum, M., Campbell, M. K., Robertson, C., & Ralston, S. H. (2005). An integrated approach to consumer representation and involvement in a multicentre randomized controlled trial. Clinical Trials, 2(1), 80–87.
25. Levit, M. (1953). On the psychology and philosophy of concept formation. Educational Theory, 3(3), 193–207.
26. Lockey, R., Sitzia, J., Gillingham, T., Millyard, J., Miller, C., Ahmed, S., et al. (2004). Training for service user involvement in health and social care research: A study of training provision and participants’ experiences (The TRUE Project). Worthing: Worthing and Southlands Hospitals NHS Trust.
27. Logan, D. C. (2009). Known knowns, known unknowns, unknown unknowns and the propagation of scientific enquiry. Journal of Experimental Botany, 60(3), 712–714.
28. Lupton, Deborah. (2003). Medicine as culture: Illness, disease and the body in western societies (2nd ed.). Beverly Hills: Sage.
29. Malterud, K. (1999). The (gendered) construction of diagnosis interpretation of medical signs in women patients. Theoretical Medicine and Bioethics, 20(3), 275–286.
30. Myers, C. S. (1916). Contributions to the study of shell shock. Being an account of certain disorders of speech, with special reference to their causation and their relation to malingering. The Lancet, 188(4854), 461–468.
31. Nisbett, R. E., & Wilson, T. D. (1977). Telling more than we can know: Verbal reports on mental processes. Psychological Review, 84(3), 231.
32. O’Donnell, M., & Entwistle, V. (2004). Consumer involvement in research projects: The activities of research funders. Health Policy, 69(2), 229–238.
33. O’Donnell, M., & Entwistle, V. (2004). Consumer involvement in decisions about what health related research is funded. Health Policy, 70(3), 281–290.
34. Patient-Centered Outcomes Research Institute PCORI. (2015). What we mean by engagement. Washington, DC. http://www.pcori.org/funding-opportunities/what-we-mean-engagement. Accessed November 2015.
35. Prior, L. (2003). Belief, knowledge and expertise: The emergence of the lay expert in medical sociology. Sociology of Health and Illness, 25(3), 41–57.
36. Project Implicit. https://implicit.harvard.edu/implicit/demo/background/index.jsp. Accessed November 2015.
37. Russell, B. (1912). Knowledge by acquaintance and knowledge by description. In The problems of philosophy (Chap. 5, pp. 25–32). Oxford: Oxford University Press.
38. Schwitzgebel, E. (2002). How well do we know our own conscious experience? The case of visual imagery. Journal of Consciousness Studies, 9(5–6), 35–53.
39. Schwitzgebel, E. (2008). The unreliability of naive introspection. Philosophical Review, 117(2), 245–273.
40. Sellars, W. (1956). Empiricism and the philosophy of mind. Minnesota Studies in the Philosophy of Science, 1(19), 253–329.
41. Spence, D. L. (2007). Ensuring respect for persons when recruiting junior enlisted personnel for research. Military Medicine, 172(3), 250–253.
42. Srivastava, R. (2013). Speaking up—When doctors navigate medical hierarchy. New England Journal of Medicine, 368(4), 302–305.
43. Staley, K., Buckland, S. A., Hayes, H., & Tarpey, M. (2014). ‘The missing links’: Understanding how context and mechanism influence the impact of public involvement in research. Health Expectations, 17(6), 755–764.
44. Subramaniam, M., Perrucci, R., & Whitlock, D. (2014). Intellectual closure: A theoretical framework linking knowledge, power, and the corporate university. Critical Sociology, 40(3), 411–430.
45. Tarn, M., Greenberg, N., & Wessely, S. (2008). Gulf War syndrome—has it gone away? Advances in Psychiatric Treatment, 14(6), 414–422.
46. Terry, S. F., Terry, P. F., Rauen, K. A., Uitto, J., & Bercovitch, L. G. (2007). Advocacy groups as research organisations: The PXE international example. Nature Reviews Genetics, 8(2), 157–164.41.
47. Thompson, J., Bissell, P., Cooper, C., Armitage, C. J., & Barber, R. (2012). Credibility and the ‘professionalized’ lay expert: Reflections on the dilemmas and opportunities of public involvement in health research. Health, 16(6), 602–618.
48. Trimble, M. R. (1985). Post-traumatic stress disorder: History of a concept. In C. R. Figley (Ed.), Trauma and its wake (Vol. 1, pp. 5–14). New York: Brunner/Mazel.
49. van de Bovenkamp, H. M., & Zuiderent-Jerak, T. (2015). An empirical study of patient participation in guideline development: Exploring the potential for articulating patient knowledge in evidence-based epistemic settings. Health Expectations, 18(5), 942–955.
50. Ward, P. R., Thompson, J., Barber, R., Armitage, C. J., Boote, J. D., Cooper, C. L., & Jones, G. L. (2010). Critical perspectives on ‘consumer involvement’ in health research: Epistemological dissonance and the know-do gap. Journal of Sociology, 46(1), 63–82.
51. Wiltshire, H. (1916). A contribution to the etiology of shell shock. The Lancet, 187(4842), 1207–1212.
52. Zelek, B., & Phillips, S. P. (2003). Gender and power: Nurses and doctors in Canada. International Journal for Equity in Health, 2(1), 1.
53. Ziebland, S., & Wyke, S. (2012). Health and illness in a connected world: How might sharing experiences on the internet affect people’s health? Milbank Quarterly, 90(2), 219–249.