Six 'biases' against patients and carers in evidence-based medicine

BMC Medicine

Volumn 13, Issue 1, 2015, Pages

  Greenhalgh, Trisha ^a   Snow, Rosamund ^a   Ryan, Sara ^a   Rees, Sian ^a   Salisbury, Helen ^a  

^a UNIVERSITY OF OXFORD   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ACCESS TO INFORMATION; ARTICLE; CAREGIVER; CLINICAL DECISION MAKING; CONSULTATION; DECISION TREE; DISEASE CONTROL; EVIDENCE BASED MEDICINE; HEALTH CARE ACCESS; HEALTH CARE POLICY; HELP SEEKING BEHAVIOR; HUMAN; INCIDENCE; PATIENT CARE; PATIENT DECISION MAKING; PATIENT PARTICIPATION; PERSONAL EXPERIENCE; QUALITY OF LIFE; SYSTEMATIC ERROR; EVIDENCE BASED PRACTICE; HEALTH CARE QUALITY; METHODOLOGY; ORGANIZATION AND MANAGEMENT; STATISTICAL BIAS;

BIAS (EPIDEMIOLOGY); CAREGIVERS; EVIDENCE-BASED MEDICINE; EVIDENCE-BASED PRACTICE; HUMANS; PATIENT PARTICIPATION; QUALITY ASSURANCE, HEALTH CARE; RESEARCH DESIGN;

EID: 84940497027     PISSN: None     EISSN: 17417015     Source Type: Journal    
DOI: 10.1186/s12916-015-0437-x     Document Type: Article

References (111)

1. Elwyn G, Quinlan C, Mulley A, Agoritsas T, Vandvik PO, Guyatt G. Trustworthy evidence for everyone. BMC Med. 2015, in press.
2. Kelly M, Heath I, Greenhalgh T, Howick J. The importance of values in evidence-based medicine. BMC Med Ethics. 2015, in press.
3. Greenhalgh T, Wherton J, Sugarhood P, Hinder S, Procter R, Stones R. What matters to older people with assisted living needs? A phenomenological analysis of the use and non-use of telehealth and telecare. Soc Sci Med. 2013;93:86-94.
4. Gawande A. Being mortal. Toronto: Doubleday Canada; 2014.
5. Charon R. Narrative medicine: a model for empathy, reflection, profession, and trust. JAMA. 2001;286:1897-902.
6. Fadiman A. The spirit catches you and you fall down: a Hmong child, her American doctors, and the collision of two cultures. New York: Macmillan; 1997.
7. Lupton D. The digitally engaged patient: self-monitoring and self-care in the digital health era. Soc Theory Health. 2013;11:256-70.
8. Vassilev I, Rogers A, Kennedy A, Koetsenruijter J. The influence of social networks on self-management support: a metasynthesis. BMC Public Health. 2014;14:719.
9. Lupton D. Medicine as culture: illness, disease and the body. Thousand Oaks, CA: Sage; 2012.
10. Snow R, Humphrey C, Sandall J. What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study. BMJ Open. 2013;3, e003583.
11. May C, Allison G, Chapple A, Chew Graham C, Dixon C, Gask L, et al. Framing the doctor patient relationship in chronic illness: a comparative study of general practitioners' accounts. Sociol Health Illness. 2004;26:135-58.
12. Barry CA, Stevenson FA, Britten N, Barber N, Bradley CP. Giving voice to the lifeworld. More humane, more effective medical care? A qualitative study of doctor-patient communication in general practice. Soc Sci Med. 2001;53:487-505.
13. Ramiller NC, Pentland BT. Management implications in information systems research: the untold story. J Assoc Inf Syst. 2009;10:2.
14. Marinker M. The chameleon, the Judas goat, and the cuckoo. J R Coll Gen Pract. 1978;28:199-206.
15. Mockford C, Staniszewska S, Griffiths F, Herron-Marx S. The impact of patient and public involvement on UK NHS health care: a systematic review. International J Qual Health Care. 2012;24:28-38.
16. Shamoon H, Duffy H, Fleischer N, Engel S, Saenger P, Strelzyn M, et al. The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes-mellitus. New Engl J Med. 1993;329:977-86.
17. Frier BM, Fisher M. Hypoglycaemia in clinical diabetes. New York: John Wiley & Sons; 2007.
18. UK Prospective Diabetes Study Group. Intensive blood-glucose control with sulphonylureas or insulin compared with conventional treatment and risk of complications in patients with type 2 diabetes (UKPDS 33). Lancet. 1998;352:837-53.
19. McCormack J, Greenhalgh T. Seeing what you want to see in randomised controlled trials: versions and perversions of UKPDS data. BMJ. 2000;320:1720.
20. Martin RD. Linking physicians' pay to the quality of care - a major experiment in the United Kingdom. N Engl J Med. 2004;351:1448-54.
21. Yudkin JS, Lipska KJ, Montori VM. The idolatry of the surrogate. BMJ. 2011;343:d7995.
22. Patel A, MacMahon S, Chalmers J, Neal B, Billot L, Woodward M, et al. Intensive blood glucose control and vascular outcomes in patients with type 2 diabetes. N Engl J Med. 2008;358:2560-72.
23. Gerstein HC, Miller ME, Byington RP, Goff Jr DC, Bigger JT, Buse JB, et al. Effects of intensive glucose lowering in type 2 diabetes. N Engl J Med. 2008;358:2545-59.
24. Lehman R, Krumholz HM. Tight control of blood glucose in long standing type 2 diabetes. BMJ. 2009;338:b800.
25. Anekwe L. NICE committee raises QOF HbA1c target. Pulse 2010. http://www.pulsetoday.co.uk/nice-committee-raises-qof-hba1c-target/11038170.article#.Vb8yNIseWJU.
26. Cappelleri JC, Zou KH, Bushmakin AG, Alvir JMJ, Alemayehu D, Symonds T. Patient-reported outcomes: Measurement, implementation and interpretation. Boca Raton, FL: CRC Press; 2013.
27. Guyatt GH, Sackett DL, Sinclair JC, Hayward R, Cook DJ, Cook RJ, et al. Users' guides to the medical literature: IX. A method for grading health care recommendations. JAMA. 1995;274:1800-4.
28. Greenhalgh T. Narrative based medicine in an evidence based world. BMJ. 1999;318:323-5.
29. Sackett DL, Rosenberg WM, Gray J, Haynes RB, Richardson WS. Evidence based medicine: what it is and what it isn't. BMJ. 1996;312:71.
30. Greenhalgh T, Wengraf T. Collecting stories: is it research? Is it good research? Preliminary guidance based on a Delphi study. Med Educ. 2008;42:242-7.
31. Mol A. The logic of care: Health and the problem of patient choice. London: Routledge; 2008.
32. May CR, Eton DT, Boehmer K, Gallacher K, Hunt K, MacDonald S, et al. Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness. BMC Health Serv Res. 2014;14:281.
33. Mattingly C. Healing dramas and clinical plots: the narrative structure of experience, vol. 7. Cambridge: Cambridge University Press; 1998.
34. Carel H. Illness: the cry of the flesh. London: Acumen; 2008.
35. Mol A, Moser I, Pols J. Care in practice. On tinkering in clinics, homes and farms. London: Transaction Publishers; 2010.
36. Anderson C, Herxheimer A. Harnessing patients' awareness of adverse reactions to the drugs. Understanding and using health experiences: improving patient care. In: Ziebland S, Coulter A, Calibrese JD, Locock L, editors. Understanding and Using Health Experiences: Improving patient care, Chapter 12. Oxford: Oxford University Press; 2013. p. 116-37.
37. Agoritsas T, Heen AF, Brandt L, Alonso-Coello P, Kristiansen A, Akl EA, et al. Decision aids that really promote shared decision making: the pace quickens. BMJ. 2015;350:g7624.
38. Ong LM, De Haes JC, Hoos AM, Lammes FB. Doctor-patient communication: a review of the literature. Soc Sci Med. 1995;40:903-18.
39. Cruz M, Pincus HA. Research on the influence that communication in psychiatric encounters has on treatment. Psychiatr Serv. 2002;53(10):1253-65.
40. Martin DJ, Garske JP, Davis MK. Relation of the therapeutic alliance with outcome and other variables: a meta-analytic review. J Consult Clin Psychol. 2000;68:438.
41. Levenstein JH, McCracken EC, McWhinney IR, Stewart MA, Brown JB. The patient-centred clinical method. 1. A model for the doctor-patient interaction in family medicine. Fam Pract. 1986;3:24-30.
42. Brown J, Stewart M, McCracken E, McWhinney IR, Levenstein J. The patient-centred clinical method. 2. Definition and application. Fam Pract. 1986;3:75-9.
43. Liberati EG, Gorli M, Moja L, Galuppo L, Ripamonti S, Scaratti G. Exploring the practice of patient centered care: The role of ethnography and reflexivity. Soc Sci Med. 2015;133:45-52.
44. Miles A, Mezzich J. The care of the patient and the soul of the clinic: person-centered medicine as an emergent model of modern clinical practice. Int J Person Centered Med. 2011;1:207-22.
45. Schei E. Doctoring as leadership: the power to heal. Perspect Biol Med. 2006;49:393-406.
46. Scambler G, Britten N. System, lifeworld and doctor-patient interaction. In: Scambler G, editor. Habermas, critical theory and health, vol. 8. London: Routledge; 2001. p. 212.
47. Greenhalgh T, Robb N, Scambler G. Communicative and strategic action in interpreted consultations in primary health care: a Habermasian perspective. Soc Sci Med. 2006;63:1170-87.
48. Werner A, Malterud K. It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors. Soc Sci Med. 2003;57:1409-19.
49. Dumit J. Illnesses you have to fight to get: facts as forces in uncertain, emergent illnesses. Soc Sci Med. 2006;62:577-90.
50. Thorne SE, Ternulf Nyhlin K, Paterson BL. Attitudes toward patient expertise in chronic illness. Int J Nurs Stud. 2000;37:303-11.
51. Paterson BL. Myth of empowerment in chronic disease. J Adv Nurs. 2001;34:574-81.
52. Carel H, Kidd IJ. Epistemic injustice in healthcare: a philosophial analysis. Med Health Care Philos. 2014;17:529-40.
53. Russo J. Survivor-controlled research: A new foundation for thinking about psychiatry and mental health. Forum: Qualitative Social Research. 2012;13(1):Art. 8: http://nbn-resolving.de/urn:nbn:de:0114-fqs120187 .
54. Noorani T. Service user involvement, authority and the 'expert-by-experience' in mental health. J Political Power. 2013;6:49-68.
55. Ogden J, Bavalia K, Bull M, Frankum S, Goldie C, Gosslau M, et al. "I want more time with my doctor": a quantitative study of time and the consultation. Fam Pract. 2004;21:479-83.
56. Cooper S-A, Melville C, Morrison J. People with intellectual disabilities: their health needs differ and need to be recognised and met. BMJ. 2004;329:414-5.
57. van Kempen JA, Robben SH, Zuidema SU, Rikkert MGO, Melis RJ, Schers HJ. Home visits for frail older people: a qualitative study on the needs and preferences of frail older people and their informal caregivers. Brit J General Practice. 2012;62:e554-60.
58. Robb N, Greenhalgh T. "You have to cover up the words of the doctor": the mediation of trust in interpreted consultations in primary care. J Health Organ Manag. 2006;20:434-55.
59. Hagan TL, Donovan HS. Self advocacy and cancer: a concept analysis. J Adv Nurs. 2013;69:2348-59.
60. Fleissig A, Glasser B, Lloyd M. Encouraging out-patients to make the most of their first hospital appointment: to what extent can a written prompt help patients get the information they want? Patient Educ Couns. 1999;38:69-79.
61. Alborz A, McNally R, Glendinning C. Access to health care for people with learning disabilities in the UK: mapping the issues and reviewing the evidence. J Health Serv Res Policy. 2005;10:173-82.
62. Schoenberg NE, Amey CH, Stoller EP, Muldoon SB. Lay referral patterns involved in cardiac treatment decision making among middle-aged and older adults. Gerontologist. 2003;43:493-502.
63. Stoller EP, Wisniewski AA. The structure of lay consultation networks: managing illness in community settings. J Aging Health. 2003;15:482-507.
64. Corbin JM, Strauss A. Unending work and care: managing chronic illness at home. San Francisco, CA: Jossey-Bass; 1988.
65. Hinder S, Greenhalgh T. "This does my head in". Ethnographic study of self-management by people with diabetes. BMC Health Serv Res. 2012;12:83.
66. Vassilev I, Rogers A, Blickem C, Brooks H, Kapadia D, Kennedy A, et al. Social networks, the 'work' and work force of chronic illness self-management: a survey analysis of personal communities. PLoS One. 2013;8, e59723.
67. Department of Health. The expert patient: a new approach to chronic disease management for the 21st century. London: Department of Health; 2001.
68. Pickard S, Rogers A. Knowing as practice: self-care in the case of chronic multi-morbidities. Soc Theory Health. 2012;10:101-20.
69. Greenhalgh T, Collard A, Campbell-Richards D, Vijayaraghavan S, Malik F, Morris J, et al. Storylines of self-management: narratives of people with diabetes from a multiethnic inner city population. J Health Serv Res Policy. 2011;16:37-43.
70. Holm S. Justifying patient self-management - evidence based medicine or the primacy of the first person perspective. Med Health Care Philos. 2005;8:159-64.
71. Lave J, Wenger E. Situated learning: legitimate peripheral participation. Cambridge: Cambridge University Press; 1991.
72. Wu E, Rapport F, Jones K, Greenhalgh T. Soldiers become casualties: doctors' accounts of the SARS epidemic. In: Greenhalgh T, Hurwitz B, Skultans V, editors. Narrative research in health and illness. London: BMJ Publications; 2004.
73. Klitzman R. Improving education on doctor-patient relationships and communication: lessons from doctors who become patients. Acad Med. 2006;81:447-53.
74. Woolf K, Cave J, McManus IC, Dacre JE. It gives you an understanding you can't get from any book. The relationship between medical students' and doctors' personal illness experiences and their performance: a qualitative and quantitative study. BMC Med Educ. 2007;7:50.
75. Tomlinson J. Lessons from "the other side": teaching and learning from doctors' illness narratives. BMJ Careers Supplement. 2014. http://careers.bmj.com/careers/advice/view-article.html?id=20017843 .Accessed August 5 2015.
76. Ussher J, Kirsten L, Butow P, Sandoval M. What do cancer support groups provide which other supportive relationships do not? The experience of peer support groups for people with cancer. Soc Sci Med. 2006;62:2565-76.
77. Kelleher D. Self-help groups and their relationship to medicine. In: Kelleher D, Gabe J, Williams G, editors. Challenging medicine. London: Routledge; 1994. p. 104-17.
78. Eysenbach G, Powell J, Englesakis M, Rizo C, Stern A. Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. BMJ. 2004;328:1166.
79. Nambisan P, Gustafson DH, Hawkins R, Pingree S. Social support and responsiveness in online patient communities: impact on service quality perceptions. Health Expect. 2015. [Ahead of print.] doi: 10.1111/hex.12332.
80. van Uden-Kraan CF, Drossaert CH, Taal E, Seydel ER, van de Laar MA. Self-reported differences in empowerment between lurkers and posters in online patient support groups. J Med Internet Res. 2008;10, e18.
81. Wicks P, Keininger DL, Massagli MP, de la Loge C, Brownstein C, Isojärvi J, et al. Perceived benefits of sharing health data between people with epilepsy on an online platform. Epilepsy Behav. 2012;23:16-23.
82. Wang Y-C, Kraut R, Levine JM. To stay or leave? The relationship of emotional and informational support to commitment in online health support groups. In: Proceedings of the ACM 2012 conference on Computer Supported Cooperative Work: 2012. ACM; 2012, p. 833-42.
83. Ziebland S, Lavie-Ajayi M, Lucius-Hoene G. The role of the Internet for people with chronic pain: examples from the DIPEx International Project. Brit J Pain. 2014;9:62-4.
84. Michie S, Johnston M, Francis J, Hardeman W, Eccles M. From theory to intervention: mapping theoretically derived behavioural determinants to behaviour change techniques. Appl Psychol. 2008;57:660-80.
85. Cohn S, Clinch M, Bunn C, Stronge P. Entangled complexity: why complex interventions are just not complicated enough. J Health Serv Res Policy. 2013;18:40-3.
86. Petticrew M. When are complex interventions 'complex'? When are simple interventions 'simple'? Eur J Public Health. 2011;21:397-8.
87. Lupton D. Digital sociology. London: Routledge; 2014.
88. Wicks P, Massagli M, Frost J, Brownstein C, Okun S, Vaughan T, et al. Sharing health data for better outcomes on PatientsLikeMe. J Med Internet Res. 2010;12, e19.
89. Hart JT. The inverse care law. Lancet. 1971;297:405-12.
90. Heslop P, Hoghton M, Blair P, Fleming P, Marriott A, Russ L. The need for FASTER CARE in the diagnosis of illness in people with intellectual disabilities. Brit J General Pract. 2013;63:661-2.
91. Hall I, Soni S, Walder A, Green R, Soni S. Avoiding delays in diagnosis: the importance of proactive liaison and education of staff in the general hospital. Adv Mental Health Intellect Disabilities. 2014;8:399-402.
92. Blair J. Everybody's life has worth. Getting it right in hospital for people with an intellectual disability and reducing clinical risks. Clin Risk. 2013;19:58-63.
93. Gilbert D. Car parking is a clinical quality issue. BMJ. 2015;350:h1312.
94. Dixon-Woods M, Cavers D, Agarwal S, Annandale E, Arthur A, Harvey J, et al. Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. BMC Med Res Methodol. 2006;6:35.
95. Pearson A. Never say never about our child. BMJ. 2015;350:h1246.
96. Andersen RS, Vedsted P. Juggling efficiency. An ethnographic study exploring healthcare seeking practices and institutional logics in Danish primary care settings. Soc Sci Med. 2015;128:239-45.
97. Feng J, Glass TA, Curriero FC, Stewart WF, Schwartz BS. The built environment and obesity: a systematic review of the epidemiologic evidence. Health Place. 2010;16:175-90.
98. Buffel T, Phillipson C. Ageing in urban environments: developing 'age-friendly' cities. Crit Soc Policy. 2012;32:597-617.
99. Satterthwaite D. The environment for children: understanding and acting on the environmental hazards that threaten children and their parents. London: Routledge; 2014.
100. Marmot M, Friel S, Bell R, Houweling TA. Taylor S; Commission on Social Determinants of Health. Closing the gap in a generation: health equity through action on the social determinants of health. Lancet. 2008;372:1661-9.
101. Jordan JE, Buchbinder R, Osborne RH. Conceptualising health literacy from the patient perspective. Patient Educ Couns. 2010;79:36-42.
102. Batterham RW, Buchbinder R, Beauchamp A, Dodson S, Elsworth GR, Osborne RH. The OPtimising HEalth LIterAcy (OPHELIA) process: study protocol for using health literacy profiling and community engagement to create and implement health reform. BMC Public Health. 2014;14:694.
103. Brownson RC, Fielding JE, Maylahn CM. Evidence-based public health: a fundamental concept for public health practice. Annu Rev Public Health. 2009;30:175-201.
104. Green LW. Public health asks of systems science: to advance our evidence-based practice, can you help us get more practice-based evidence? Am J Public Health. 2006;96:406.
105. Vallis M. Are behavioural interventions doomed to fail? Challenges to self-management support in chronic diseases. Can J Diabetes. 2015. [Ahead of print.] doi: 10.1016/j.jcjd.2015.01.002 .
106. Robert G, Ziebland S, Coulter A, Calabrese J, Locock L. Participatory action research: using experience-based co-design to improve the quality of healthcare services. Understanding and using experiences: improving patient care. Oxford: Oxford University Press; 2013. p. 138-49.
107. Timmermans S, Berg M. The gold standard: the challenge of evidence-based medicine and standardization in health care. Philadelphia, PA: Temple University Press; 2010.
108. Barker D. The scholarship of engagement: a taxonomy of five emerging practices. J Higher Educ Outreach Engagement. 2004;9:123-37.
109. Goldenberg MJ. Iconoclast or creed? Objectivism, pragmatism, and the hierarchy of evidence. Perspect Biol Med. 2009;52:168-87.
110. Montgomery K. How doctors think: clinical judgment and the practice of medicine. Oxford: Oxford University Press; 2005.
111. Greenhalgh T, Howick J, Maskrey N. Evidence based medicine: a movement in crisis? BMJ. 2014;348:g3725.