The patient as participant and knowledge manager;Pasienten som medvirker og kunnskapshåndterer

Norsk Epidemiologi

Volumn 23, Issue 2, 2013, Pages 225-230

  Austvoll Dahlgren, Astrid ^a   Johansen, Marit ^a  

^a NORWEGIAN KNOWLEDGE CENTRE FOR THE HEALTH SERVICES   (Norway)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; DECISION MAKING; EVIDENCE BASED PRACTICE; HEALTH CARE ACCESS; HEALTH CARE POLICY; HEALTH PRACTITIONER; HUMAN; KNOWLEDGE MANAGEMENT; MEDICAL INFORMATION; PATIENT PARTICIPATION; QUALITY CONTROL;

EID: 84887530419     PISSN: 08032491     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (82)

1. Sosial og helsedirektoratet og bedre skal det bli! (2005-2015). Oslo, 2005.
2. Dawes M, Summerskill W, Glasziou P, Cartabellotta A, Martin J, Hopayian K, et al. Sicily statement on evidence-based practice. BMC Med Educ 2005; 5 (1): 1.
3. Nutbeam D. Health promotion glossary. Geneva: World Health Organization, 1998.
4. Coulter A. The Autonomous patient: ending paternalism in medical care. London: TSO, 2002.
5. Taylor K. Paternalism, participation and partnership-the evolution of patient centeredness in the consultation. Patient Educ Couns 2009; 74 (2): 150-5.
6. Butler C, Greenhalgh T. What is already known about involving users in service transformation? In: Greenhalgh T, Humphrey C, Woodard F, eds. User involvement in health care. Chichester: Wiley-Blackwell, 2011: 10-27.
7. LOV-1999-07-02-63. Lov om pasientrettigheter (pasientrettighetsloven), 1999.
8. LOV-2001-06-15-93. Lov om helseforetak m. m. (helseforetaksloven), 2002.
9. Helse-og omsorgsdepartementet. St. meld. nr. 47 (2008-2009). Samhandlingsreformen. Rett behandling-på rett sted-til rett tid. 19. juni 2009.
10. Declaration of Alma-Ata, 1978.
11. Andreassen T. Brukermedvirkning i helsetjenesten. Oslo: Gyldendal, 2005.
12. Kommunal-og regionaldepartementet. Brukermedvirkning. 27. 10. 2009 [03. 05. 2013]. Tilgjengelig på: http://www. regjeringen. no/nb/dokumentarkiv/stoltenberg-ii/krd/tema-og-redaksjoneltinnhold/kampanjesider/2007/kvalitetskommuneprogrammet/verktoykasse/brukermedvirkning/brukermedvirkn ing. html?id=582859.
13. Chalmers I. People are "participants" in research-Further suggestions for other terms to describe "participants" are needed. BMJ 1999; 318 (7191): 1141.
14. Glenton C, Oxman A. The use of evidence by health care user organizations. Health Expect 1998; 1 (1): 14-22.
15. Kummervold P, Chronaki C, Lausen B, Prokosch H, Rasmussen J, Santana S, et al. eHealth Trends in Europe 2005-2007: A Population-Based Survey. J Med Internet Res 2008; 10 (4): e42.
16. Fox S, Jones S. The Social Life of Health Information, 2009. Tilgjengelig på: http://www. pewinternet. org/Reports/2009/8-The-Social-Life-of-Health-Information. aspx.
17. Glenton C, Paulsen E, Oxman A. Portals to Wonderland? Health portals lead confusing information about the effects of health care. BMC Med Inform Decis Mak 2005; 5: 7: 8.
18. Austvoll-Dahlgren A, Bjorndal A, Odgaard-Jensen J, Helseth S. Evaluation of a Web Portal for Improving Public Access to Evidence-Based Health Information and Health Literacy Skills: A Pragmatic Trial. PloS One 2012; 7 (5).
19. Wolfe R, Sharp L, Lipsky M. Content and design attributes of antivaccination web sites. JAMA 2002; 287 (24): 3245-8.
20. Woloshin S, Schwartz LM, Black WC, Welch HG. Women's perceptions of breast cancer risk: how you ask matters. Med Decis Making 1999; 19 (3): 221-9.
21. Peterson G, Aslani P, Williams KA. How do consumers search for and appraise information on medicines on the Internet? A qualitative study using focus groups. J Med Internet Res 2003; 5 (4): e33.
22. Sillence E, Briggs P, Harris PR, Fishwick L. How do patients evaluate and make use of online health information? Soc Sci Med 2007; 64 (9): 1853-62.
23. Lloyd AJ. The extent of patients' understanding of the risk of treatments. Qual Health Care 2001; 10 (Suppl 1): i14-8.
24. Robinson E, Kerr C, Stevens A, Lilford R, Braunholtz D, Edwards S, et al. Lay public's understanding of equipoise and randomisation in randomised controlled trials. Research Support, Non-U. S. Gov't. NHS R&D HTA Programme, 2005 Mar. Report No.: 1366-5278 (Linking) Contract No.: 8.
25. Berkman N, Sheridan S, Donahue K, Halpern D, Crotty K. Low Health Literacy and Health Outcomes: An Updated Systematic Review. Ann Intern Med 2011; 155 (2): 97-U89.
26. Sanders L, Federico S, Klass P, Abrams M, Dreyer B. Literacy and child health: a systematic review. Arch Pediatr Adolesc Med 2009; 163 (2): 131-40.
27. Zarcadoolas C, Pleasant A, Greer D. Understanding health literacy: an expanded model. Health Promot Int 2005; 20 (2): 195-203.
28. Bugge C, Entwistle V, Watt I. The significance for decision-making of information that is not exchanged by patients and health professionals during consultations. Soc Sci Med 2006; 63 (8): 2065-78.
29. Legare F, Ratte S, Gravel K, Graham I. Barriers and facilitators to implementing shared decision-making in clinical practice: update of a systematic review of health professionals' perceptions. Patient Educ Couns 2008; 73 (3): 526-35.
30. Shekelle PG, Pronovost PJ, Wachter RM, McDonald KM, Schoelles K, Dy SM, et al. The top patient safety strategies that can be encouraged for adoption now. Ann Int Med 2013; 158 (5 Pt 2): 365-8.
31. International Alliance of Patients' Organizations (IAPO). Declaration on Patient-Centred Healthcare, 09. 04. 2013. Tilgjengelig på: http://www. patientsorganizations. org/showarticle. pl?id=712&n=312.
32. Christiaens W, Kohn L, Léonard C, Denis A, Daue F, Cleemput I. Models for citizen and patient involvement in health care policy-Part I: exploration of their feasibility and acceptability. Health Services Research (HSR). Brussels: Belgian Health Care Knowledge Centre (KCE) 2012 KCE Reports 195C D/2012/10273/105.
33. Longtin Y, Sax H, Leape L, Sheridan S, Donaldson L, Pittet D. Patient participation: current knowledge and applicability to patient safety. Mayo Clin Proc 2010; 85 (1): 53-62.
34. European Commission. Patient Involvement. Eurobarometer Qualitative Study, 2012.
35. Coulter A, Jenkinson C. European patients' views on the responsiveness of health systems and healthcare providers. Eur J Public Health 2005; 15 (4): 355-60.
36. Rise MB. Mer brukermedvirkning? Tidsskr Nor Legeforen 2012; 132 (16): 1882-4.
37. Oakley K, Malins G, Riste L, Allan J. Consumer participation in service evaluation and quality improvement: key ingredients for a system to deliver national indicators. Australas Psychiatry 2011; 19 (6): 493-7.
38. Staley K. Exploring Impact: Public involvement in NHS, public health and social care research. INVOLVE, Eastleigh, 2009.
39. Basch E, Aronson N, Berg A, Flum D, Gabriel S, Goodman S, et al. Methodological standards and patientcenteredness in comparative effectiveness research: the PCORI perspective. JAMA 2012; 307 (15): 1636-40.
40. Dell H. Consumer involvement in the Cochrane Collaboration: Background paper. Strategic Session-Auckland, March 201022. 05. 2013. Tilgjengelig på: http://www. cochrane. org/community/organisationadministration/collaboration-strategic-sessions/2010-auckland-new-zealand.
41. Moumjid N, Gafni A, Bremond A, Carrere MO. Shared decision making in the medical encounter: Are we all talking about the same thing? Med Decis Making 2007; 27 (5): 539-46.
42. Zarcadoolas C, Pleasant A, Greer D. Advancing health literacy: a framework for understanding and action. 1st ed. San Francisco, CA: Jossey-Bass, 2006.
43. Thompson J, Bissell P, Cooper C, Armitage CJ, Barber R. Credibility and the 'professionalized' lay expert: reflections on the dilemmas and opportunities of public involvement in health research. Health 2012; 16 (6): 602-18.
44. Mockford C, Staniszewska S, Griffiths F, Herron-Marx S. The impact of patient and public involvement on UK NHS health care: a systematic review. Int J Qual Health Care 2012; 24 (1): 28-38.
45. Rasanathan K, Posayanonda T, Birmingham M, Tangcharoensathien V. Innovation and participation for healthy public policy: the first National Health Assembly in Thailand. Health Expect 2012; 15 (1): 87-96.
46. Vincent-Jones P. Embedding Economic Relationships through Social Learning? The Limits of Patient and Public Involvement in Healthcare Governance in England. J Law Soc 2011; 38 (2): 215-44.
47. Oliver S, Armes DG, Gyte G. Public involvement in setting a national research agenda: a mixed methods evaluation. Patient 2009; 2 (3): 179-90.
48. Aabakken L, Baasland I, Lygren I, Osnes M. Development and evaluation of written patient information for endoscopic procedures. Endoscopy 1997; 29 (1): 23-6.
49. Carney L, Jones L, Braddon F, Pullyblank AM, Dixon AR. A colorectal cancer patient focus group develops an information package. Ann R Coll Surg Engl 2006; 88 (5): 447-9.
50. Guarino P, Elbourne D, Carpenter J, Peduzzi P. Consumer involvement in consent document development: a multicenter cluster randomized trial to assess study participants' understanding. Clin Trials 2006; 3 (1): 19-30.
51. Legare F, Boivin A, van der Weijden T, Pakenham C, Burgers J, Legare J, et al. Patient and public involvement in clinical practice guidelines: a knowledge synthesis of existing programs. Med Decis Making 2011; 31 (6): 45-74.
52. Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect 2012, DOI: 10. 1111/j. 1369-7625. 2012. 00795. x.
53. Staniszewska S, Haywood KL, Brett J, Tutton L. Patient and public involvement in patient-reported outcome measures: evolution not revolution. Patient 2012; 5 (2): 79-87.
54. Vale CL, Thompson LC, Murphy C, Forcat S, Hanley B. Involvement of consumers in studies run by the Medical Research Council Clinical Trials Unit: results of a survey. Trials 2012; 13: 9.
55. Hamilton S, Pinfold V, Rose D, Henderson C, Lewis-Holmes E, Flach C, et al. The effect of disclosure of mental illness by interviewers on reports of discrimination experienced by service users: a randomized study. Int Rev Psychiatry 2011; 23 (1): 47-54.
56. Hailey D, Werko S, Bakri R, Cameron A, Gohlen B, Myles S, et al. Involvement of consumers in health technology assessment activities by Inahta agencies. Int J Technology Assess Health Care 2013; 29 (1): 79-83.
57. Vale C, Tierney J, Spera N, Whelan A, Nightingale A, Hanley B. Evaluation of patient involvement in a systematic review and meta-analysis of individual patient data in cervical cancer treatment. Syst Rev 2012; 1: 23.
58. Montoya M, Kent E. Dialogical action: moving from community-based to community-driven participatory research. Qual Health Res 2011; 21 (7): 1000-11.
59. Coulter A, Ellins J. Patient-focused interventions: a review of the evidence. London: Picker Institute Europe, 2006.
60. Pilling SA, Williams MB, Brackett RH, Gourley R, Weg MW, Christensen AJ, et al. Part I, patient perspective: activating patients to engage their providers in the use of evidence-based medicine: a qualitative evaluation of the VA Project to Implement Diuretics (VAPID). Implement Sci 2010; 5: 23.
61. Ryan R, Santesso N, Hill S, Lowe D, Kaufman C, Grimshaw J. Consumer-oriented interventions for evidence-based prescribing and medicines use: an overview of systematic reviews. Cochrane Database Syst Rev 2011 (5): CD007768.
62. Kernick D, Mitchell A. Working with lay people in health service research: a model of co-evolution based on complexity theory. J Interprof Care 2010; 24 (1): 31-40.
63. Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database Syst Rev 2006 (3): CD004563.
64. Glenton C, Santesso N, Rosenbaum S, Nilsen E, Rader T, Ciapponi A, et al. Presenting the results of Cochrane Systematic Reviews to a consumer audience: a qualitative study. Med Decis Making 2010; 30 (5): 566-77.
65. UpToDate. Wolter Kluwer Health, 2013 [sitert 2013 11. 04]. Tilgjengelig på: http://www. uptodate. com/home.
66. ClinicalEvidence. British Medical Journal Group, 2013 [sitert 11. 04. 2013]. Tilgjengelig på: http://clinicalevidence. bmj. com/x/index. html.
67. Nasjonalt senter for alternativ behandling. Nasjonalt senter for alternativ behandling, 2013 [sitert 11. 04. 2013]. Tilgjengelig på: http://www. nifab. no/.
68. Nasjonalt kunnskapssenter for helsetjenesten. Nasjonalt kunnskapssenter for helsetjenesten, 2013 [sitert 11. 04. 2013]. Tilgjengelig på: http://www. kunnskapssenteret. no/Prosjekter/Formidling+av+internasjonale+ oversikter. 1588. cms.
69. Helsebiblioteket. Nasjonalt kunnskapssenter for helsetjenesten2013 [sitert 11. 04. 2013]. Tilgjengelig på: http://www. helsebiblioteket. no/Pasientinformasjon/Brosjyrer.
70. Eysenbach G, Diepgen T. Towards quality management of medical information on the internet: evaluation, labelling, and filtering of information. BMJ 1998; 317 (7171): 1496-500.
71. Health On The Net Foundation (HON). Trustworthy health and medical information: the health on the net intiative. 2010 [sitert 2010 30. 11. 2010]. Tilgjengelig på: http://www. hon. ch/HONcode/Webmasters/.
72. Eysenbach G. Towards ethical guidelines for e-health: JMIR theme issue on eHealth ethics. J Med Internet Res 2000; 2 (1): E7.
73. Eysenbach G, Powell J, Kuss O, Sa E. Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review. JAMA 2002; 287 (20): 2691-700.
74. Berger B, Steckelberg A, Meyer G, Kasper J, Muhlhauser I. Training of patient and consumer representatives in the basic competencies of evidence-based medicine: a feasibility study. BMC Med Educ 2010; 10: 1-9.
75. Stacey D, Bennett C, Barry M, Col N, Eden K, Holmes-Rovner M, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2011 (10): CD001431.
76. Dickersin K, Braun L, Mead M, Millikan R, Wu AM, Pietenpol J, et al. Development and implementation of a science training course for breast cancer activists: Project LEAD (leadership, education and advocacy development). Health Expect 2001; 4 (4): 213-20.
77. Opheim E. Brukermedvirkning på systemnivå: en kvalitativ studie av nytteverdi av kurs i kunnskapsbasert praksis for brukerrepresentanter [Mastergradsoppgave]. Høgskolen i Bergen, 2011.
78. The critical appraisal skills program (CASP) [sitert 08. 10. 21013]. Tilgjengelig på: http://www. casp-uk. net/.
79. Cochrane training: Consumers. The Cochrane Collaboration [sitert 08. 10. 21013]. Tilgjengelig på: http://training. cochrane. org/consumers.
80. Sunnskepsis. no. Høgskolen i Oslo og Akershus, 2013 [sitert 11. 04. 2013]. Tilgjengelig på: http://www. sunnskepsis. no/.
81. Goldacre B. Bad Science teaching resources for schools. Bad Science2008 [sitert 16. 04. 2013]. Tilgjengelig på: http://www. badscience. net/2008/10/bad-science-teaching-resources-for-schools/.
82. Chalmers I. The art of medicine: Explaining the unbiased creation of treatment comparison groups. Lancet 2009; 374 (9702): 1670-1.