1. Glenn Fleishman, “Turning to the Net to Lift the Shadow of Cancer’s Dark Days,” New York Times, 9 July 1998.

2. John K. Iglehart, “The American Health Care System,” The New England Journal of Medicine, Vol. 340, No. 1, 7 January 1999, 7: www.nejm.org/content

3. “Quality First: Better Health Care for All Americans,” President’s Commission on Consumer Protection and Quality in the Health Care Industry, 12 March 1998, chap. 1: www.hcqualitycommission.gov.

4. Craig Copeland, “Issues of Quality and Consumer Rights in the Health Care Market,” EBRI Issue Brief, No.196, April 1998, 7.

5. Michael Millenson, “Beyond the Managed Care Backlash: Medicine in the Information Age,” Progressive Policy Institute, July 1997, 9: www.dlcppi.org/adobe/health/millens.pdf

6. The Dartmouth Atlas of Health Care (Chicago, IL: American Hospital Publishing Inc., 1998), 128.

7. John Wennberg, “The Relationship of Variations in Health Care and Patient Preferences to Health Outcomes,” paper presented at the University of Chicago, 30 October 1998.

8. Robert Cunningham,“Informed Consumer Choice Still a Distant and Difficult Goal,” Medicine and Health Perspectives, 8 September 1997, 1-4.

9. Stanley B. Jones and Marion Ein Lewin, editors, “Improving the Medicare Market: Adding Choice and Protections,” (Washington, DC: National Academy Press: 1996): www.nap.edu/readingroom/reader.cgi?auth=free&label=ul.book.0309055350

10. “Quality Measures to Quality Care; Examples of Quality Improvement at Work,” www.ahcpr.gov/qual/21stcenb.htm, from The Challenge and Potential for Assuring Quality Health Care for the 21st Century, prepared by the Department of Health and Human Services for the Domestic Policy Council, Pub. No. OM 98-0009, 7 June 1998, www.ahcpr.gov/qual/21stcena.htm; From Ron Winslow, “Making the Grade: Improvements in Quality of Care Suggest Hospitals Are Taking Report Cards to Heart,” Wall Street Journal, 19 October 1998, R16.

11. Paul Starr, The Social Transformation of American Medicine, (New York, NY: Basic Books, 1982).

12. John D. Williamson and Kate Danaher, Self-Care in Health (London: Croom Helm, 1978), 39; Christopher P. Elliott-Binns, “An Analysis of Lay Medicine,” Journal of the Royal College of General Practitioners, Vol. 23, 1973, 255-264. Both quoted in Tom Ferguson, “Laypeople as Providers of Health Care,” HealthWorld Online: www.healthy.net/library/journals/self-carearchives/lyprvhc.htm.

13. Frank Riessman, “Managed Care and Self-Help,” National Self-Help Clearinghouse: www.selfhelp.org/managed.html.

14. Self-Help Network of Kansas: http://wsupsy.psy.twsu.edu/shnok/.

15. “Falling Through the Net II: New Data on the Digital Divide,” (Washington, DC: National Telecommunications and Information Administration, 1999): www.ntia.doc.gov/ntiahome/net2.

16. Janice G, Douglas and Kenneth Dave compiled these statistics for a report to published on NetWellness Web, Spring 1999: www.netwellness.org.

17. The Emerging Technologies Group of Find SVP is now owned by Cyber Dialogue, Inc.: www.cyberdialogue.com

18. Marc Fisher, “The Doctor Is Out,” Washington Post Magazine, 19 July 1998, 8.

19. Attention Deficit Hyperactivity Disorder, National Institute of Mental Health: www.nimh.nih.gov/ publist/943572.htm; Feingold Association: www.feingold.org.

20. Quackwatch: www.quackwatch.com.

21. “Remedies Targeted in International Health Claim Surf Day,” Federal Trade Commission, November 1998: www.ftc.gov/opa/1998/9811/intlhlth.htm.

22. Brooks Edwards, “The Good News and Bad News on the Internet,” Mayo Health Oasis, 30 September 1996.

23. “Bugs and Viruses:The Medical Industry Has Been Slow to Exploit Information Technology. Patients Will Suffer,” The Economist, 28 February 1998.

24. Joseph V. Henderson, “Meditation on the New Media and Professional Education,” in Health and the New Media:Technologies Transforming Personal and Public Health, Linda M. Harris, ed., (Rahwah, NJ: Lawrence Erlbaum Associates, 1995), 192-193.

25. 1997 Partnership for Networked Consumer Health Information Conference: odphp.osophs.dhhs.gov/confrnce/partnr97/transcripts/clancy.htm.

26. Nancy Ann Jeffrey, “A Little Knowledge,” Wall Street Journal, 19 October 1998, R8.

27. Interview with author; See also: Sarah Williams, “Growing Reliance on Self-Reported HEDIS Data Underscores Need for Auditing,” Medicine & Health Perspectives, 18 May 1998, 1-4.

28. “Americans as Health Care Consumers: The Role of Quality Information,” Agency for Health Care Policy and Research: www.ahcpr.gov/qual/kffigh.htm; Robert Wood Johnson Foundation Employer Health Insurance Survey 1997, cited in “How Widespread is Managed Competition,” Center for Health Systems Change, Data Bulletin, Issue 12, Summer 1998: http://www.hschange.org/CONTENT/50/.

29. Alejandro R. Jadad and Anna Gagliardi, “Rating Health Information on the Internet: Navigating to Knowledge or to Babel?” Journal of the American Medical Association, 25 February 1998; P. Kim,T.R. Eng, J. Deering, A. Maxfield, “Published Criteria for Evaluating Health Related Web Sites: Review,” British Medical Journal, in press 1999.

30. Jan Alexander and Marsha Tate, “The Web as a Research Tool: Evaluation Techniques,” Wolfgang Memorial Library.

31. Daniel Hoch, Deirdre Norris, John Lester, and Ari Marcus, “Information Exchange in an Epilepsy Forum on the World Wide Web,” Massachusetts General Hospital’s Department of Neurology, 1998: neuro-oas.mgh.harvard.edu/cscw98/seizure_paper.html.

32. John J. Gartland, “Physicians and Consumer-Driven Medicine,” Medical Practice Communicator 4(6): 2, 1997: www.medscape.com/HMI/MPCommunicator/1997/v04.n06/mpc0406.06.html.

33. Lisa Napoli, “Pilots Help Doctors Navigate Their Residency,” CyberTimes, 19 July 1998; Erick Schonfeld, “Can Computers Cure Health Care?” Fortune Text Edition, 30 March 1998.

34. Michele Klein, “The Effect of Online Literature Searching on Patient Length of Stay,” Academic Medicine, Vol. 69, June 1994, 489-495.

35. Tom Ferguson, “The Anatomy of Empowerment,” HealthWorld Online: www.healthy.net/library/journals/self-carearchives/empowr.htm

36. Roger T. Williams, “Professional Involvement in Community Support Groups, State Health Network of Kansas: wsup03.psy.twsu.edu/shnok/sharelib/profinv/profinv.htm; Katie Hafner, “Can the Internet Cure the Common Cold?” New York Times, 9 July 1998.

37. Interview with author.

38. Bette J. Briggs, Chief, Division of Fiduciary Interpretations, Office of Regulations and Interpretations, in a letter to Diana Orantes Ceresi, Associate General Counsel, Service Employees International Union, 19 February 1998: http://www.dol.gov/dol/pwba/public/programs/ori/advisory98/seiu5ltr.htm

39. Consumer Health Education Council: www.healthchec.org; “Comparing the Quality of Maryland HMOs: A Guide for Consumers,” Maryland Health Care Access and Cost Commission: www.hcacc.state.md.us/hmo/97hmo.

40. Thomas R. Eng, et al., “Access to Health Information and Support,” Journal of the American Medical Association, Vol. 280, No.15, 21 October 1998: http://jama.ama-assn.org/issues/v280n15/abs/jpp80018.html

41. Tom Ferguson, “The Invisible Health Care System,” Healthworld Online: www.healthy.net/hwlibraryjournals/self-carearchives/ivhcrsyt.htm.

42. Quoted in “Market Ideas to Mavens,” Robert Wood Johnson Foundation: www.rwjf.org/library/cibtop.htm

43. Roz D. Lasker and the Committee on Medicine and Public Health, “Medicine and Public Health:The Power of Collaboration,” (New York, NY: New York Academy of Medicine, 1997).

44. Ibid.

45. Interview with author.

46. Lasker, op. cit.

47. Coalition for Healthier Cities and Communities: www.healthycommunities.org.

48. David Kendall and S. Robert Levine, “Creating a Health Information Network: Stage Two of the Health Care Revolution,” 1997: www.dlcppi.org/adobe/texts/health/hinfonet.htm.

49. National Committee on Vital and Health Statistics, “Assuring a Health Dimension for the National Information Infrastructure: A Concept Paper,” presented to the U.S. Department of Health and Human Services Data Council, 14 April 1998.

50. Reid Cushman and Don Detmer, “Information Policy for the U.S. Health Information Sector: Engineering, Political Economy and Ethics,” Milbank Quarterly:. www.med.harvard.edu/publications/milbank/art/frame.html

Index | Information | Challenges | Barriers | What's Needed | Afterword | Endnotes | Resources