- 1. Norwegian Knowledge Centre for the Health Services;2. Norwegian Knowledge Centre for the Health Services;3. Centre for Health Economics and Policy Analysis;4. Norwegian Knowledge Centre for the Health Services;
我们在本文中提出告知公众并使之参与政策制定和实施的策略。使各级卫生系统的公众(患者和公众)参与政策制定和实施的重要性得到广泛认同。他们是公共政策所带来的有利或不利影响的最终受众,许多政府和组织已认识到使公众参与知证决策过程的价值。这样做的潜在好处包括制定包含公众想法并表明其关注点的政策,改善政策实施效果,促进医疗卫生服务和增进健康。公众参与也可被看做是政策的本质目标之一,鼓励民主参与、公众责任和透明。关于公众参与策略,我们提出可考虑的三个问题,分别是:① 与媒体合作时,可用哪些策略来告知公众有关政策的制定和实施?② 与民间社会团体合作时,可用什么策略告知公众并使之参与政策制定和实施?③ 可用什么方法使需方参与政策制定与实施?
Citation: Andrew D Oxman,Simon Lewin,John N Lavis,Atle Fretheim. SUPPORT Tools for evidence-informed health Policymaking (STP) 15: Engaging the public in evidence-informed policymaking*. Chinese Journal of Evidence-Based Medicine, 2010, 10(5): 520-526. doi: 10.7507/1672-2531.20100440 Copy
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.