知證衛生決策工具之十五——使公眾參與知證決策*_《中國循證醫學雜志》

作者：

Andrew D Oxman ¹ , Simon Lewin ² , John N Lavis ³ , Atle Fretheim ⁴

關鍵詞：

DOI：

10.7507/1672-2531.20100440

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我們在本文中提出告知公眾并使之參與政策制定和實施的策略。使各級衛生系統的公眾（患者和公眾）參與政策制定和實施的重要性得到廣泛認同。他們是公共政策所帶來的有利或不利影響的最終受眾，許多政府和組織已認識到使公眾參與知證決策過程的價值。這樣做的潛在好處包括制定包含公眾想法并表明其關注點的政策，改善政策實施效果，促進醫療衛生服務和增進健康。公眾參與也可被看做是政策的本質目標之一，鼓勵民主參與、公眾責任和透明。關于公眾參與策略，我們提出可考慮的三個問題，分別是：① 與媒體合作時，可用哪些策略來告知公眾有關政策的制定和實施？② 與民間社會團體合作時，可用什么策略告知公眾并使之參與政策制定和實施？③ 可用什么方法使需方參與政策制定與實施？

引用本文： Andrew D Oxman,Simon Lewin,John N Lavis,Atle Fretheim. 知證衛生決策工具之十五——使公眾參與知證決策*. 中國循證醫學雜志, 2010, 10(5): 520-526. doi: 10.7507/1672-2531.20100440 復制

1.	Lavis JN, Oxman AD, Lewin S, et al. SUPPORT Tools for evidenceinformed health Policymaking (STP). Introduction. Health Res Policy Syst, 2009, 7(Suppl 1): I1.
2.	Herxheimer A, Goodare H. Who are you, and who are we?Looking through some key words. Health Expect, 1999, 2: 3-6.
3.	Deber RB, Kraetschmer N, Urowitz S, et al. Patient, consumer, client, or customer: what do people want to be called? Health Expect, 2005, 8: 345-351.
4.	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 Technol Assess, 2004, 8: 1-IV.
5.	National Institute for Health and Clinical Excellence (NICE): Community engagement to improve health 2008 [http://www.nice.org. uk/PH009]. London: National Institute for Health and Clinical Excellence.
6.	Hanley B, Bradburn J, Barnes M, et al. Involving the public in NHS, publichealth and social care research: briefing notes for researchers Second edition. 2003 [http://www.invo.org.uk/pdfs/ Briefing%20Note%20Final.dat.pdf]. Eastleigh: INVOLVE.
7.	World Health Organization (WHO): Declaration of Alma Ata: Report of the International Conference on Primary Health Care 1978 [http:// www.who.int/publications/almaata_declaration_en.pdf]. Geneva: World Health Organization.
8.	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.
9.	Nilsen ES, Myrhaug HT, Johansen M, et al. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database Syst Rev, 2006, 3: CD004563.
10.	Morgan LM. Community participation in health: perpetual allure, persistent challenge. Health Policy Plan, 2001, 16: 221-230.
11.	Zakus JD, Lysack CL. Revisiting community participation. Health Policy Plan, 1998, 13: 1-12.
12.	Macq J, Torfoss T, Getahun H. Patient empowerment in tuberculosis control: reflecting on past documented experiences. Trop Med Int Health, 2007, 12: 873-885.
13.	Grilli R, Ramsay C, Minozzi S. Mass media interventions: effects on health services utilisation. Cochrane Database Syst Rev, 2002, 1: CD000389.
14.	Vidanapathirana J, Abramson MJ, Forbes A, et al. Mass media interventions for promoting HIV testing. Cochrane Database Syst Rev, 2005, 3: CD004775.
15.	Bala M, Strzeszynski L, Cahill K. Mass media interventions for smoking cessation in adults. Cochrane Database Syst Rev, 2008, 1: CD004704.
16.	Bertrand JT, Anhang R. The effectiveness of mass media in changing HIV/AIDS-related behaviour among young people in developing countries. World Health Organ Tech Rep Ser, 2006, 938: 205-241.
17.	Moynihan R, Oxman A, Lavis JN, et al. Evidence-Informed Health Policy: Using Research to Make Health Systems Healthier. Rapport nr. 1-2008 2008 [http://www.kunnskapssenteret.no/Publikasjoner/ 469.cms]. Oslo, Nasjonalt kunnskapssenter for helsetjenesten.
18.	Larsson A, Oxman AD, Carling C, et al. Medical messages in the media--barriers and solutions to improving medical journalism. Health Expect, 2003, 6: 323-331.
19.	Voss M. Checking the pulse: Midwestern reporters’ opinionson their ability to report health care news. Am J Public Health, 2002, 92: 1158-1160.
20.	Oxman AD, Guyatt GH, Cook DJ, et al. An index of scientific quality for health reports in the lay press. J Clin Epidemiol, 1993, 46: 987-1001.
21.	Johansen LW, Bjorndal A, Flottorp S, et al. [Evaluation of health information in newspapers and brochures.What can we believe?]. Tidsskr Nor Laegeforen, 1996, 116: 260-264.
22.	Moynihan R, Bero L, Ross-Degnan D, et al. Coverage by the news media of the benefits and risks of medications. N Engl J Med, 2000, 342: 1645-1650.
23.	Cassels A, Hughes MA, Cole C, et al. Drugs in the news: an analysis of Canadian newspaper coverage of new prescription drugs. CMAJ, 2003, 168: 1133-1137.
24.	Biondo E, Khoury MC. [Validation of a questionnaire to assess the quality of health information in Argentinian newspapers]. Biomedica, 2005, 25: 366-376.
25.	Woloshin S, Schwartz LM. Press releases: translating research into news. JAMA, 2002, 287: 2856-2858.
26.	Stryker JE. Reporting medical information: effects of press releases and newsworthiness on medical journal articles’ visibility in the news media. Prev Med, 2002, 35: 519-530.
27.	Cochrane Collaboration. Cochrane Library press releases [http:// www.cochrane.org/press/releases.htm].
28.	Health Behavior News Service: Translating evidence into news [http://www.cfah.org/hbns/journalist/].
29.	Glenton C, Underland V, Kho M, et al. Summaries of findings, descriptions of interventions, and information about adverse effects would make reviews more informative. J Clin Epidemiol, 2006, 59: 770-778.
30.	Norwegian Knowledge Centre for the Health Services: Cochrane Library reports [http://www.kunnskapssenteret.no/Publikasjoner].
31.	SUPporting POlicy relevant Reviews and Trials (SUPPORT) Collaboration: SUPPORT structured summaries of systematic reviews [http://www.support-collaboration.org/summaries.htm].
32.	Centre for Health Communication and Participation: Health Knowledge bulletins [http://www.latrobe.edu.au/chcp/hkn/bulletins. html].
33.	Lavis JN, Permanand G, Oxman AD, et al. SUPPORT Tools for evidence- informed health Policymaking (STP). 13. Preparing and using policy briefs to support evidence-informed policymaking. Health Res Policy Syst, 2009, 7(Suppl 1): S13.
34.	Glenton C, Paulsen EJ, Oxman AD. Portals to Wonderland: health portals lead to confusing information about the effects of health care. BMC Med Inform Decis Mak, 2005, 5: 7.
35.	Rosenbaum SE, Glenton C, Nylund HK, et al. Development of summary of findings tables for Cochrane reviews. J Clin Epidemiol in press.
36.	Rosenbaum SE, Glenton C, Oxman A. Evaluation of summary of findings tables for Cochrane reviews. Two randomized trials. J Clin Epidemiol in press.
37.	Schwartz LM, Woloshin S, Welch HG. Using a drug facts box to communicate drug benefits and harms: two randomized trials. Ann Intern Med, 2009, 150: 516-527.
38.	Schwartz LM, Woloshin S, Welch HG. The drug facts box: providing consumers with simple tabular data on drug benefit and harm. Med Decis Making, 2007, 27: 655-662.
39.	European Commission: Research. Guide to successful communications [http://ec.europa.eu/research/science-society/science-communication/ mediarelations3_en.htm].
40.	Enkin MW, Jadad AR. Using anecdotal information in evidencebased health care: heresy or necessity? Ann Oncol, 1998, 9: 963-966.
41.	Moynihan R. Tipsheet for reporting on drugs, devices and medical technologies 2004 [http://www.commonwealthfund.org/Content/ Publications/Other/2004/Sep/Tipsheet--For-Reporting-on-Drugs- -Device-and-Medical-Technologies.aspx]. New York: The Commonwealth Fund.
42.	Guyatt G, Ray J, Gibson N, et al. A Journalist’s Guide for Health Stories. American Medical Writers Association Journal, 1999, 14(2): 32-41.
43.	Levi R. Medical Journalism. Exposing Fact, Fiction, Fraud Lund: Studentlitteratur; 2000.
44.	Eysenbach G, Powell J, Kuss O, et al. Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review. JAMA, 2002, 287: 2691-2700.
45.	Organisation for Economic Co-operation and Development (OECD): Promises and Problems of E-Democracy: Challenges of online citizen engagement 2003 [http://www.oecd.org/dataoecd/ 9/11/35176328.pdf]. Paris: OECD.
46.	Kelson M. The NICE Patient Involvement Unit. Evidence-Based Healthcare & Public Health, 2005, 9: 304-307.
47.	National Institute for Health and Clinical Excellence (NICE): About the Patient and Public Involvement Programme (PPIP) [http:// www.nice.org.uk/media/D44/49/AboutPPIP.pdf].
48.	Culyer AJ. Involving stakeholders in healthcare decisions—the experience of the National Institute for Health and Clinical Excellence (NICE) in England and Wales. Healthc Q, 2005, 8: 56-60.
49.	de Joncheere K, Hill SR, Klazinga N, et al. The Clinical Guideline Programme of the National Institute for Health and Clinical Excellence. A review by the WHO 2007 [http://www.nice.org.uk/niceMedia/ pdf/boardmeeting/brdjan07item2b.pdf]. London: NICE.
50.	National Institute for Health and Clinical Excellence (NICE): How NICE clinical guidelines are developed: an overview for stakeholders, the public and the NHS Fourth edition. 2009 [http://www.nice. org.uk/media/62F/36/How_NICE_clinical_guidelines_are_develope d_4th_edn_FIANL_LR.pdf]. London: NICE.
51.	Glenton C, Oxman AD. The use of evidence by health care user organizations. Health Expect, 1998, 1: 14-22.
52.	Mintzes B. Should patient groups accept money from drug companies? No. BMJ, 2007, 334: 935.
53.	Telford R, Boote JD, Cooper CL. What does it mean to involve consumers successfully in NHS research? A consensus study. Health Expect, 2004, 7: 209-220.
54.	Renfrew MJ, Dyson L, Herbert G, et al. Developing evidence-based recommendations in public health--incorporating the views of practitioners, service users and user representatives. Health Expect, 2008, 11: 3-15.

1. Lavis JN, Oxman AD, Lewin S, et al. SUPPORT Tools for evidenceinformed health Policymaking (STP). Introduction. Health Res Policy Syst, 2009, 7(Suppl 1): I1.
2. Herxheimer A, Goodare H. Who are you, and who are we?Looking through some key words. Health Expect, 1999, 2: 3-6.
3. Deber RB, Kraetschmer N, Urowitz S, et al. Patient, consumer, client, or customer: what do people want to be called? Health Expect, 2005, 8: 345-351.
4. 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 Technol Assess, 2004, 8: 1-IV.
5. National Institute for Health and Clinical Excellence (NICE): Community engagement to improve health 2008 [http://www.nice.org. uk/PH009]. London: National Institute for Health and Clinical Excellence.
6. Hanley B, Bradburn J, Barnes M, et al. Involving the public in NHS, publichealth and social care research: briefing notes for researchers Second edition. 2003 [http://www.invo.org.uk/pdfs/ Briefing%20Note%20Final.dat.pdf]. Eastleigh: INVOLVE.
7. World Health Organization (WHO): Declaration of Alma Ata: Report of the International Conference on Primary Health Care 1978 [http:// www.who.int/publications/almaata_declaration_en.pdf]. Geneva: World Health Organization.
8. 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.
9. Nilsen ES, Myrhaug HT, Johansen M, et al. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database Syst Rev, 2006, 3: CD004563.
10. Morgan LM. Community participation in health: perpetual allure, persistent challenge. Health Policy Plan, 2001, 16: 221-230.
11. Zakus JD, Lysack CL. Revisiting community participation. Health Policy Plan, 1998, 13: 1-12.
12. Macq J, Torfoss T, Getahun H. Patient empowerment in tuberculosis control: reflecting on past documented experiences. Trop Med Int Health, 2007, 12: 873-885.
13. Grilli R, Ramsay C, Minozzi S. Mass media interventions: effects on health services utilisation. Cochrane Database Syst Rev, 2002, 1: CD000389.
14. Vidanapathirana J, Abramson MJ, Forbes A, et al. Mass media interventions for promoting HIV testing. Cochrane Database Syst Rev, 2005, 3: CD004775.
15. Bala M, Strzeszynski L, Cahill K. Mass media interventions for smoking cessation in adults. Cochrane Database Syst Rev, 2008, 1: CD004704.
16. Bertrand JT, Anhang R. The effectiveness of mass media in changing HIV/AIDS-related behaviour among young people in developing countries. World Health Organ Tech Rep Ser, 2006, 938: 205-241.
17. Moynihan R, Oxman A, Lavis JN, et al. Evidence-Informed Health Policy: Using Research to Make Health Systems Healthier. Rapport nr. 1-2008 2008 [http://www.kunnskapssenteret.no/Publikasjoner/ 469.cms]. Oslo, Nasjonalt kunnskapssenter for helsetjenesten.
18. Larsson A, Oxman AD, Carling C, et al. Medical messages in the media--barriers and solutions to improving medical journalism. Health Expect, 2003, 6: 323-331.
19. Voss M. Checking the pulse: Midwestern reporters’ opinionson their ability to report health care news. Am J Public Health, 2002, 92: 1158-1160.
20. Oxman AD, Guyatt GH, Cook DJ, et al. An index of scientific quality for health reports in the lay press. J Clin Epidemiol, 1993, 46: 987-1001.
21. Johansen LW, Bjorndal A, Flottorp S, et al. [Evaluation of health information in newspapers and brochures.What can we believe?]. Tidsskr Nor Laegeforen, 1996, 116: 260-264.
22. Moynihan R, Bero L, Ross-Degnan D, et al. Coverage by the news media of the benefits and risks of medications. N Engl J Med, 2000, 342: 1645-1650.
23. Cassels A, Hughes MA, Cole C, et al. Drugs in the news: an analysis of Canadian newspaper coverage of new prescription drugs. CMAJ, 2003, 168: 1133-1137.
24. Biondo E, Khoury MC. [Validation of a questionnaire to assess the quality of health information in Argentinian newspapers]. Biomedica, 2005, 25: 366-376.
25. Woloshin S, Schwartz LM. Press releases: translating research into news. JAMA, 2002, 287: 2856-2858.
26. Stryker JE. Reporting medical information: effects of press releases and newsworthiness on medical journal articles’ visibility in the news media. Prev Med, 2002, 35: 519-530.
27. Cochrane Collaboration. Cochrane Library press releases [http:// www.cochrane.org/press/releases.htm].
28. Health Behavior News Service: Translating evidence into news [http://www.cfah.org/hbns/journalist/].
29. Glenton C, Underland V, Kho M, et al. Summaries of findings, descriptions of interventions, and information about adverse effects would make reviews more informative. J Clin Epidemiol, 2006, 59: 770-778.
30. Norwegian Knowledge Centre for the Health Services: Cochrane Library reports [http://www.kunnskapssenteret.no/Publikasjoner].
31. SUPporting POlicy relevant Reviews and Trials (SUPPORT) Collaboration: SUPPORT structured summaries of systematic reviews [http://www.support-collaboration.org/summaries.htm].
32. Centre for Health Communication and Participation: Health Knowledge bulletins [http://www.latrobe.edu.au/chcp/hkn/bulletins. html].
33. Lavis JN, Permanand G, Oxman AD, et al. SUPPORT Tools for evidence- informed health Policymaking (STP). 13. Preparing and using policy briefs to support evidence-informed policymaking. Health Res Policy Syst, 2009, 7(Suppl 1): S13.
34. Glenton C, Paulsen EJ, Oxman AD. Portals to Wonderland: health portals lead to confusing information about the effects of health care. BMC Med Inform Decis Mak, 2005, 5: 7.
35. Rosenbaum SE, Glenton C, Nylund HK, et al. Development of summary of findings tables for Cochrane reviews. J Clin Epidemiol in press.
36. Rosenbaum SE, Glenton C, Oxman A. Evaluation of summary of findings tables for Cochrane reviews. Two randomized trials. J Clin Epidemiol in press.
37. Schwartz LM, Woloshin S, Welch HG. Using a drug facts box to communicate drug benefits and harms: two randomized trials. Ann Intern Med, 2009, 150: 516-527.
38. Schwartz LM, Woloshin S, Welch HG. The drug facts box: providing consumers with simple tabular data on drug benefit and harm. Med Decis Making, 2007, 27: 655-662.
39. European Commission: Research. Guide to successful communications [http://ec.europa.eu/research/science-society/science-communication/ mediarelations3_en.htm].
40. Enkin MW, Jadad AR. Using anecdotal information in evidencebased health care: heresy or necessity? Ann Oncol, 1998, 9: 963-966.
41. Moynihan R. Tipsheet for reporting on drugs, devices and medical technologies 2004 [http://www.commonwealthfund.org/Content/ Publications/Other/2004/Sep/Tipsheet--For-Reporting-on-Drugs- -Device-and-Medical-Technologies.aspx]. New York: The Commonwealth Fund.
42. Guyatt G, Ray J, Gibson N, et al. A Journalist’s Guide for Health Stories. American Medical Writers Association Journal, 1999, 14(2): 32-41.
43. Levi R. Medical Journalism. Exposing Fact, Fiction, Fraud Lund: Studentlitteratur; 2000.
44. Eysenbach G, Powell J, Kuss O, et al. Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review. JAMA, 2002, 287: 2691-2700.
45. Organisation for Economic Co-operation and Development (OECD): Promises and Problems of E-Democracy: Challenges of online citizen engagement 2003 [http://www.oecd.org/dataoecd/ 9/11/35176328.pdf]. Paris: OECD.
46. Kelson M. The NICE Patient Involvement Unit. Evidence-Based Healthcare & Public Health, 2005, 9: 304-307.
47. National Institute for Health and Clinical Excellence (NICE): About the Patient and Public Involvement Programme (PPIP) [http:// www.nice.org.uk/media/D44/49/AboutPPIP.pdf].
48. Culyer AJ. Involving stakeholders in healthcare decisions—the experience of the National Institute for Health and Clinical Excellence (NICE) in England and Wales. Healthc Q, 2005, 8: 56-60.
49. de Joncheere K, Hill SR, Klazinga N, et al. The Clinical Guideline Programme of the National Institute for Health and Clinical Excellence. A review by the WHO 2007 [http://www.nice.org.uk/niceMedia/ pdf/boardmeeting/brdjan07item2b.pdf]. London: NICE.
50. National Institute for Health and Clinical Excellence (NICE): How NICE clinical guidelines are developed: an overview for stakeholders, the public and the NHS Fourth edition. 2009 [http://www.nice. org.uk/media/62F/36/How_NICE_clinical_guidelines_are_develope d_4th_edn_FIANL_LR.pdf]. London: NICE.
51. Glenton C, Oxman AD. The use of evidence by health care user organizations. Health Expect, 1998, 1: 14-22.
52. Mintzes B. Should patient groups accept money from drug companies? No. BMJ, 2007, 334: 935.
53. Telford R, Boote JD, Cooper CL. What does it mean to involve consumers successfully in NHS research? A consensus study. Health Expect, 2004, 7: 209-220.
54. Renfrew MJ, Dyson L, Herbert G, et al. Developing evidence-based recommendations in public health--incorporating the views of practitioners, service users and user representatives. Health Expect, 2008, 11: 3-15.

《中國循證醫學雜志》

知證衛生決策工具之十五——使公眾參與知證決策*

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《中國循證醫學雜志》

知證衛生決策工具之十五——使公眾參與知證決策*

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