Consumer Use of Computerized Applications to Address Health and Health Care Needs. Bibliography

03/01/2009

  • Adler, Kenneth G., Web Portals in Primary Care: An Evaluation of Patient Readiness and Willingness to Pay for Online Services. Journal of Medical Internet Research, 2006. 8(4): p. e26.
  • As Enrollment Begins, New Survey Underscores Challenges If Seniors Are To Take Advantage of Medicare Drug Benefit. Menlo Park, CA: Henry J. Kaiser Family Foundation, Press release November 10, 2005. Available at:http://www.kff.org/kaiserpolls/med111005nr.cfm.
  • Baker, L. et al., Use of the Internet and E-mail for Health Care Information: Results from a National Survey. Journal of the American Medial Association, 2003. 289(18): p. 2400-2406.
  • Beauchamp, N. and T.R. Eng, eHealth: The Momentum Is Building. Seattle, WA: eHealth Institute, 2006. Available at: http://www.ehealthinstitute.org/Summit/Agenda.aspx.
  • Beckjord, E.B. et al., Use of the Internet to Communicate with Health Care Providers in the United States: Estimates from the 2003 and 2005 Health Information National Trends Surveys (HINTS).Journal of Medical Internet Research, 2007. 9(3): p. e20.
  • Blumenthal, D. and J.P. Glaser, Information Technology Comes to Medicine. New England Journal of Medicine, 2007. 356(24): p. 2527-2534.
  • Connecting Americans to Their Healthcare: A Common Framework for Networked Personal Health Information. New York, NY: Connecting for Health, 2006. Available at:http://www.connectingforhealth.org/commonframework/docs/P9_NetworkedPHRs.pdf.
  • Connecting Americans to Their Healthcare: Final Report. New York, NY: Connecting for Health, 2004. Available at: http://www.connectingforhealth.org/resources/wg_eis_final_report_0704.pdf.
  • Crutzen, Rik et al., Internet-delivered Interventions Aimed at Adolescents: A Delphi Study on Dissemination and Exposure. Health Education Research, 2008. 23(3): p. 427-439.
  • D'Alessandro, Donna M. et al., A Randomized Controlled Trial of an Information Prescription for Pediatric Patient Education on the Internet. Archives of Pediatrics & Adolescent Medicine, 2004. 158(9): p. 857-862.
  • Day, Jennifer Cheeseman, Alex Janus, and Jessica Davis, Computer and Internet Use in the United States: 2003. Washington, DC: U.S. Census Bureau, 2005. Current Population Reports P23-208. Available at: http://www.census.gov/prod/2005pubs/p23-208.pdf
  • Demographics of Internet Users. Washington, DC: Pew Internet & American Life Project, survey conducted April-May 2008. Available at: http://www.pewinternet.org/trends.asp.
  • Discovering How Video Games Can Motivate Healthy Behaviors: More than $2 Million Awarded to 12 Research Teams. Princeton, NJ: Robert Wood Johnson Foundation, Press Release from May 29, 2008. Available at: http://www.rwjf.org/pr/product.jsp?id=30932.
  • E-Health and the Elderly: How Seniors Use the Internet for Health Information. Menlo Park, CA: Henry J. Kaiser Family Foundation, 2005. Available at: http://www.kff.org/entmedia/7223.cfm.
  • Eichner J. and P. Dullabh, Accessible Health Information Technology (Health IT) for Populations With Limited Literacy: A Guide for Developers and Purchasers of Health IT. Rockville, MD: U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality, October 2007. AHRQ Pub. No. 08-0010-EF.
  • Etter, Jean-Francois, A List of the Most Popular Smoking Cessation Web Sites and a Comparison of Their Quality. Nicotine & Tobacco Research, 2006. 8(Suppl 1): p. S27-34.
  • Expanding the Reach and Impact of Consumer e-Health Tools. Rockville, MD: U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion, 2006. Available at:http://www.health.gov/communication/ehealth/ehealthtools/default.htm.
  • Eysenbach G. et al., Empirical Studies Assessing the Quality of Health Information for Consumers on the World Wide Web. Journal of the American Medical Association, 2002. 287(20): p. 2691-2700.
  • Fox, Susannah, Digital Divisions. Washington, DC: Pew Internet & American Life Project, 2005. Available at: http://www.pewinternet.org/PPF/r/165/report_display.asp.
  • Fox, Susannah, E-Patients with a Disability or Chronic Disease. Washington, DC: Pew Internet & American Life Project, 2007.
  • Fox, Susannah, Online Health Search 2006. Washington, DC: Pew Internet & American Life Project, 2006. Available at: http://www.pewinternet.org/PPF/r/190/report_display.asp.
  • Fox, Susannah, Prescription Drugs Online. Washington, DC: Pew Internet & American Life Project, 2004.
  • Fox, Susannah, Recruit Doctors. Let e-Patients Lead. Go Mobile. Posted on e-patients.net on March 6, 2008. Available at: http://www.e-patients.net/archives/2008/03/recruit_doctors.html.
  • Frost, J.H. and M.P. Massagli, Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data.Journal of Medical Internet Research, 2008. 10(3): p. e15.
  • Goldner, Melinda. Using the Internet and Email for Health Purposes: The Impact of Health Status. Social Science Quarterly, 2006. 87(3): p. 690-710.
  • Harris, K.M. and Buntin M. Beeuwkes, Choosing a Health Care Provider: The Role of Quality Information. Princeton, NJ: The Robert Wood Johnson Foundation, 2008. Research Synthesis Report no. 14. Available at: http://www.rwjf.org/pr/product.jsp?id=29683.
  • Health Poll Report Survey. Menlo Park, CA: Henry J. Kaiser Family Foundation, conducted June 2-5, 2005. Available at: http://www.kff.org/kaiserpolls/pomr071805oth.cfm.
  • Hesse, Bradford W., Enhancing Consumer Involvement in Health Care, in Health Care Communication in the New Media Landscape, eds. Jerry C. Parker and Esther Thorson. New York, NY: Springer Publishing Company, 2008.
  • Hoover, J. Nicholas, Coalition Including Intel and Wal-Mart Plan Electronic Medical Records for Employees. Information Week, December 4, 2006.
  • Horrigan, John B. and Katherine Murray, Rural Broadband Internet Use. Washington, DC: Pew Internet & American Life Project, 2006. Available at:http://www.pewinternet.org/pdfs/PIP_Rural_Broadband.pdf.
  • Horrigan, John B., A Typology of Information and Communication Technology Users. Washington, DC: Pew Internet & American Life Project, 2007.
  • Horrigan, John B., Home Broadband 2008. Washington, DC: Pew Internet & American Life Project, 2008. Available at: http://www.pewinternet.org/PPF/r/257/report_display.asp.
  • Internet Activities. Washington, DC: Pew Internet & American Life Project, surveys conducted March 2000-December 2007. Available at: http://www.pewinternet.org/trends.asp.
  • Kutner, M. et al., Health Literacy of America’s Adults: Results from the 2003 National Assessment of Health Literacy. Washington, DC: U.S. Department of Education, National Center for Health Education Statistics, 2006. NCES Pub. No. 2006-483. Available at: http://nces.ed.gov/pubs2006/2006483.pdf.
  • Lebo, Harlan, The 2007 Digital Future Report: Surveying the Digital Future, Year Six. Los Angeles, CA: USC Annenberg School, Center for the Digital Future, 2007.
  • Liederman, E.M. et al., Web Messaging: The Impact on Message Volume and Satisfaction. Journal of General Internal Medicine, 2005. 20(1): p. 52-57. 
  • Madden, Mary, Internet Penetration and Impact. Washington, DC: Pew Internet & American Life Project, 2006. Available at: http://www.pewinternet.org/pdfs/PIP_Internet_Impact.pdf.
  • Many Nationwide Believe in the Potential Benefits of Electronic Medical Records and are Interested in Online Communications with Physicians. Harris Interactive, survey conducted 2005. Available at:http://www.harrisinteractive.com/news/allnewsbydate.asp?NewsID=895.
  • Murray, E. et al., Interactive Health Communication Applications for People with Chronic Disease, Cochrane Database of Systematic Reviews, 2005.

     

  • NORC, Literature Review and Environmental Scan: Evaluation of Personal Health Records Pilots for Fee-for-Service Medicare Enrollees. Washington, DC: U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, 2008 (not yet released).  

     

  • O'Connor, Annette M. et al., Toward the ‘Tipping Point’: Decision Aids and Informed Patient Choice. Health Affairs, 2007. 26(3): p. 716-725.

     

  • Online Behavior Change and Disease Management: A Research Dialogue. Washington, DC: National Cancer Institute and The Robert Wood Johnson Foundation, 2001. Available at:http://www.hetinitiative.org/content/Behav_Chng_and_Disease_Mgt.pdf.

     

  • Paasche-Orlow, M.K. et al., The Prevalence of Limited Health Literacy. Journal of General Internal Medicine, 2005. 20(2): p. 175-184.

     

  • Pagliari, C. et al., What is eHealth: A Scoping Exercise to Map the Field. Journal of Medical Internet Research, 2005. 7(1): p. e9.

     

  • Ralston, James D., Patient Web Services Integrated with a Shared Medical Record: Patient Use and Satisfaction. Journal of the American Medical Information Association, 2007. 14: p. 798-806.

     

  • RAND Corporation, Consumer Use of Information When Making Treatment Decisions. Chicago, IL: BlueCross BlueShield Association, 2005. Available at:http://www.bcbs.com/blueresources/cost/consumer-use-of-information.html.

     

  • Rutten, L.F., et al., Cancer Communication: Health Information National Trends Survey 2003 and 2005. Washington, DC: National Institutes of Health, National Cancer Institute, 2007. NIH Pub. No. 07-6214. Available at: http://hints.cancer.gov/hints/docs/hints_report.pdf.

     

  • Schiavo, Renata, The Rise of e-Health: Current Trends and Topics on Online Health Communications. Journal of Medical Marketing, 2008. 8(1): p. 9-18.

     

  • Sciamanna, Christopher N. et al., Patient Access to U.S. Physicians Who Conduct Internet or E-mail Consults. Journal of General Internal Medicine, 2007. 22(3): p. 378-381.

     

  • Seniors’ Early Experiences with the Medicare Prescription Drug Benefit. Menlo Park, CA: Henry J. Kaiser Family Foundation, Poll conducted April 2006. Available at:http://www.kff.org/kaiserpolls/pomr042506pkg.cfm.

     

  • Siegel, E.R. et al., Information Rx: Evaluation of a New Informatics Tool for Physicians, Patients, and Libraries. Information Services and Use, 2006. 26(1): p. 1-10.
  • Silow-Carroll, Sharon and Lisa Duchon, E-health Options for Business: Evaluating the Choices. New York, NY: The Commonwealth Fund, 2002.
  • Stone, J.H., Communication between Physicians and Patients in the Era of E-Medicine. New England Journal of Medicine, 2007. 356(24): p. 2451-2455.
  • Survey Finds Americans Want Electronic Personal Health Information to Improve Own Health Care. New York, NY: Connecting for Health, 2006.
  • Swartz, S., T. Cowan, and I. Batista, Using Claims Data to Examine Patients Using Practice-based Internet Communication: Is There a Clinical Digital Divide? Journal of Medical Internet Research, 2004. 6(1): p. e1.
  • Tang, P.C. and D. Lansky, The Missing Link: Bridging the Patient-provider Health Information Gap. Health Affairs, 2005. 24(5): p. 1290-1295.
  • Thompson T.G. and D.J. Brailer, The Decade of Health Information Technology: Delivering Consumer-centric and Information-rich Health Care. Washington, DC: U.S. Department of Health and Human Services, 2004.
  • von Knoop, Carina et al., Vital Signs: E-Health in the United States. Boston, MA: Boston Consulting Group, 2003. Available at:http://www.bcg.com/impact_expertise/publications/files/Vital_Signs_E_Health_United_States_Jan2003.pdf.
  • Wantland, D.J. et al., The Effectiveness of Web-based vs. Non-Web-based Interventions: A Meta-analysis of Behavioral Change Outcomes. Journal of Medical Internet Research, 2004. 6(4): p. e40.
  • Wasson, John H., Todd A. MacKenzie, and Michael Hall, Patients Use an Internet Technology to Report When Things Go Wrong. Quality & Safety in Health Care, 2007. 16(3): p. 213-215.
  • Weingart, S.N. et al., Who Uses the Patient Internet Portal? The PatientSite Experience. Journal of the American Medical Informatics Association, 2006. 13(1): p. 91-95.
  • White, Casey B. et al., A Content Analysis of E-mail Communication Between Patients and Providers: Patients Get the Message. Journal of the American Medical Informatics Association, 2004. 11(4): p. 260-267.
  • Wood, Fred B. et al., Use of Internet Audience Measurement Data to Gauge Market Share for Online Health Information Services. Journal of Medical Internet Research, 2005. 7(3): p. e31.
  • Ybarra, M. and M. Suman, Reasons, Assessments and Actions Taken: Sex and Age Differences in Uses of Internet Health Information. Health Education Research, 2008. 23(3): p. 512-521.

[*] The different prevalence rates in these two studies stems in part from the different ways in which they ask the question. HINTS contains two separate variables: “use the internet to look for medical information for self” and “use the internet to look for medical information for other;” while the Pew studies ask if you have ever looked online for a wide range of topics—including information about medical, health care, and wellness topics. The broader definition of health information used in the Pew studies may, at least partially, account for the fact that Pew’s estimates are consistently higher than those from the HINTS data set.

[†] The different populations examined in the surveys may account for a portion of this range. For example, some studies only ask this question of email users.

[‡] It should be noted that 95% of the respondents who used the Spanish-language version of the page are Hispanic. However, the majority of those individuals were not using the website from within the United States and did not currently reside in the country.


[1] Expanding the Reach and Impact of Consumer e-Health Tools. Rockville, MD: U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion, 2006, p. 59. Available at: http://www.health.gov/communication/ehealth/ehealthtools/default.htm.

[2] Connecting Americans to Their Healthcare: Final Report. New York, NY: Connecting for Health, 2004, p. 6. Available at: http://www.connectingforhealth.org/resources/wg_eis_final_report_0704.pdf.

[3] Demographics of Internet Users. Washington, DC: Pew Internet & American Life Project, survey conducted August 2008. Available at: http://www.pewinternet.org/trends.asp.

[4] Estimates from: Baker, L. et al., Use of the Internet and E-mail for Health Care Information: Results from a National Survey. Journal of the American Medial Association, 2003. 289(18): p. 2400-2406; Pew Internet & American Life Project, Internet Activities; RAND Corporation, Consumer Use of Information When Making Treatment Decisions. Chicago, IL: BlueCross BlueShield Association, 2005. Available at: http://www.bcbs.com/blueresources/cost/consumer-use-of-information.html; Rutten L.F., et al., Cancer Communication: Health Information National Trends Survey 2003 and 2005. Washington, DC: National Institutes of Health, National Cancer Institute, 2007. NIH Pub. No. 07-6214. Available at: http://hints.cancer.gov/hints/docs/hints_report.pdf; and Ybarra, M. and M. Suman, Reasons, Assessments and Actions Taken: Sex and Age Differences in Uses of Internet Health Information. Health Education Research, 2008. 23(3): p. 512-521.

[5] Rutten et al. 2007, p. 13.

[6] Fox, Susannah, Prescription Drugs Online. Washington, DC: Pew Internet & American Life Project, 2004, p. 2.

[7] Fox 2004, p. 6; and Baker et al. 2003.

[8] Rutten et al. 2007, p. 13.

[9] Baker et al. 2003.

[10] Expanding the Reach and Impact of Consumer e-Health Tools 2006, citing Poll Indicates Strong Support for New Medical Technologies. The Wall Street Journal Online, October 7, 2005.

[11] NORC, Literature Review and Environmental Scan: Evaluation of Personal Health Records Pilots for Fee-for-Service Medicare Enrollees. Washington, DC: U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, 2008 (not yet released), citing  D. Lansky, A National Agenda for Personal Health Records? How Will We Really Empower Consumers in the Next Decade? presentation for Connecting for Health, 2006.

[12] Rutten et al. 2007.

[13] Fox, Susannah, Online Health Search 2006. Washington, DC: Pew Internet & American Life Project, 2006, p. 2. Available at: http://www.pewinternet.org/PPF/r/190/report_display.asp.

[14] Estabrook, Leigh, Evans Witt, and Lee Rainie, Information Searches that Solve Problems. Washington, DC: Pew Internet & American Life Project, 2007. Available at: http://www.pewinternet.org/pdfs/Pew_UI_LibrariesReport.pdf.

[15] Fox 2006.

[16] Expanding the Reach and Impact of Consumer e-Health Tools 2006.

[17] Rutten et al. 2007.

[18] Expanding the Reach and Impact of Consumer e-Health Tools 2006.

[19] Adler, Kenneth G., Web Portals in Primary Care: An Evaluation of Patient Readiness and Willingness to Pay for Online Services. Journal of Medical Internet Research, 2006. 8(4): p. e26; citing Anne Kittler et al., Primary Care Physician Attitudes towards Using a Secure Web-based Portal Designed to Facilitate Electronic Communication with Patients. Informatics in Primary Care, 2004. 12(3): p. 129-138.

[20] Beauchamp, N. and T.R. Eng, eHealth: The Momentum Is Building. Seattle, WA: eHealth Institute, 2006, p. 7. Available at: http://www.ehealthinstitute.org/Summit/Agenda.aspx; Many Nationwide Believe in the Potential Benefits of Electronic Medical Records and are Interested in Online Communications with Physicians. Harris Interactive, survey conducted 2005. Available at: http://www.harrisinteractive.com/news/allnewsbydate.asp?NewsID=895.

[21] Beckjord, E.B. et al., Use of the Internet to Communicate with Health Care Providers in the United States: Estimates from the 2003 and 2005 Health Information National Trends Surveys (HINTS).Journal of Medical Internet Research, 2007. 9(3).

[22] Survey Finds Americans Want Electronic Personal Health Information to Improve Own Health Care. New York, NY: Connecting for Health, 2006, p. 3.

[23] Tang, P.C. and D. Lansky, The Missing Link: Bridging the Patient-provider Health Information Gap. Health Affairs, 2005. 24(5): p. 1294.

[24] Hesse, Bradford W., Enhancing Consumer Involvement in Health Care, in Health Care Communication in the New Media Landscape, eds. Jerry C. Parker and Esther Thorson. New York, NY: Springer Publishing Company, 2008; Expanding the Reach and Impact of Consumer e-Health Tools 2006.

[25] NORC 2008, citing Aetna: Nearly Two-Thirds of Americans Are Not Familiar with Personal Health Records, a Resource Available to Millions of Consumers, Biotech Week, August 1 2007.

[26] Manhattan Research, CyberCitizen Health Study 2007, and internal WebMD numbers.

[27] von Knoop, Carina et al., Vital Signs: E-Health in the United States. Boston, MA: Boston Consulting Group, 2003. Available at: http://www.bcg.com/impact_expertise/publications/files/Vital_Signs_E_Health_United_States_Jan2003.pdf.

[28] Wood, Fred B. et al., Use of Internet Audience Measurement Data to Gauge Market Share for Online Health Information Services. Journal of Medical Internet Research, 2005. 7(3): p. e31.

[29] Siegel, E.R. et al., Information Rx: Evaluation of a New Informatics Tool for Physicians, Patients, and Libraries. Information Services and Use, 2006. 26(1): p. 2-3.

[30] von Knoop et al. 2003, p. 31

[31] von Knoop et al. 2003.

[32] Etter, Jean-Francois, A List of the Most Popular Smoking Cessation Web Sites and a Comparison of Their Quality. Nicotine & Tobacco Research, 2006. 8(Suppl 1): p. s29.

[33] Wood et al. 2005.

[34] von Knoop et al. 2003.

[35] Fox 2006.

[36] D'Alessandro, Donna M. et al., A Randomized Controlled Trial of an Information Prescription for Pediatric Patient Education on the Internet. Archives of Pediatrics & Adolescent Medicine, 2004. 158(9): p. 857-862; citing Lindner, K., A Piece of My Mind: Encourage Information Therapy [comment]. Journal of the American Medical Association, 1992. 267: p. 2592.

[37] Siegel et al. 2006. 

[38]Expanding the Reach and Impact of Consumer e-Health Tools, 2006, p. 83.

[39] Wasson, John H., Todd A. MacKenzie, and Michael Hall, Patients Use an Internet Technology to Report When Things Go Wrong. Quality & Safety in Health Care, 2007. 16(3): p. 213-215.

[40] Expanding the Reach and Impact of Consumer e-Health Tools, 2006, p. 59.

[41] O'Connor, Annette M. et al., Toward the ‘Tipping Point’: Decision Aids and Informed Patient Choice. Health Affairs, 2007. 26(3): p. 716-725.

[42] Discovering How Video Games Can Motivate Healthy Behaviors: More than $2 Million Awarded to 12 Research Teams. Princeton, NJ: Robert Wood Johnson Foundation, Press Release from May 29, 2008. Available at: http://www.rwjf.org/pr/product.jsp?id=30932.

[43] Connecting Americans to Their Healthcare: Final Report, 2004, p. 97.

[44] Internet Activities. Washington, DC: Pew Internet & American Life Project, survey conducted March 2000-December 2007. Available at: http://www.pewinternet.org/trends.asp.

[45] Frost, J.H. and M.P. Massagli, Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data.Journal of Medical Internet Research, 2008. 10(3): p. e15.

[46] Harris, K.M. and Buntin M. Beeuwkes, Choosing a Health Care Provider: The Role of Quality Information. Princeton, NJ: The Robert Wood Johnson Foundation, 2008, p. 4. Research Synthesis Report no. 14. Available at: http://www.rwjf.org/pr/product.jsp?id=29683.

[47] Connecting Americans to Their Healthcare: Final Report, 2004; citing P.J. Cunningham and L. Kohn, Health Plan Switching: Choice or Circumstance? Health Affairs, 2000. 19: p. 158-164; and M.C. Reed and S. Trude, Tracking Report: Results from the Community Tracking Study. Washington, DC: Center for Studying Health System Change, 2002.

[48] Blumenthal, D. and J.P. Glaser, Information Technology Comes to Medicine. New England Journal of Medicine, 2007. 356(24): p. 2527-2534.

[49] E-Health and the Elderly: How Seniors Use the Internet for Health Information. Menlo Park, CA: Henry J. Kaiser Family Foundation, 2005, p. 52. Available at: http://www.kff.org/entmedia/7223.cfm.

[50] Harris and Beeuwkes 2008.

[51] Hoover, J. Nicholas, Coalition Including Intel and Wal-Mart Plan Electronic Medical Records for Employees. Information Week, December 4, 2006.

[52] Harris and Beeuwkes 2008, p. 4.

[53] Thompson T.G. and D.J. Brailer, The Decade of Health Information Technology: Delivering Consumer-centric and Information-rich Health Care. Washington, DC: U.S. Department of Health and Human Services, 2004.

[54] Beauchamp and Eng, p. 10.

[55] von Knoop et al. 2003, p. 35.

[56] Expanding the Reach and Impact of Consumer e-Health Tools 2006, p. 82.

[57] White, Casey B. et al., A Content Analysis of E-mail Communication Between Patients and Providers: Patients Get the Message. Journal of the American Medical Informatics Association, 2004. 11(4): p. 260-267.

[58] von Knoop et al. 2003.

[59] E. M. Liederman et al., Patient-Physician Web Messaging, Journal of General Internal Medicine, 2005. 20(1).

[60] Connecting Americans to Their Healthcare: Final Report, 2004, p. 6.

[61] Hesse 2008; and O’Connor et al. 2007, p. 719-720.

[62] NORC 2008, citing Personal Health Records and Personal Health Record Systems. Washington, DC: U.S. Department of Health and Human Services, 2006.

[63] Connecting Americans to Their Healthcare: Final Report 2004.

[64] Tang and Lansky 2005, p. 1291.

[65] Connecting Americans to Their Healthcare: Final Report 2004.

[66] Tang and Lansky 2006, p. 1292; and Blumenthal and Glasser 2007.

[67] Connecting Americans to Their Healthcare: Final Report 2004, p. 55.

[68] Connecting Americans to Their Healthcare: A Common Framework for Networked Personal Health Information. New York, NY: Connecting for Health, 2006. Available at: http://www.connectingforhealth.org/commonframework/docs/P9_NetworkedPHRs.pdf.

[69] NORC 2008.

[70] NORC 2008.

[71] Hoover 2006.

[72] NORC 2008, citing C. Bocchino, "AHIC Testimony,"  American Health Information Community, Consumer Empowerment Subgroup, 2006.

[73] Pew Internet & American Life Project, Internet Activities.

[74] Bosworth, Adam, Presentation as part of The Future: Consumer Health Information Technologies webcast for the National Institutes of Health, December 10, 2007.

[75] Shen, Bern, Presentation as part of The Future: Consumer Health Information Technologies webcast for the National Institutes of Health, December 10, 2007.

[76] Bosworth 2007.

[77] Survey Finds Americans Want Electronic Personal Health Information to Improve Own Health Care 2006, p. 3.

[78] NORC 2008.

[79] Intuit, Frequently Asked Questions about Quicken Health. Available at:  http://quickenhealth.intuit.com/faqs_integration.jsp. Accessed 16 August 2008.

[80] Expanding the Reach and Impact of Consumer e-Health Tools 2006.

[81] Horrigan, John B., Home Broadband 2008. Washington, DC: Pew Internet & American Life Project, 2008. Available at: http://www.pewinternet.org/PPF/r/257/report_display.asp.

[82] Pew Internet & American Life Project, Internet Activities.

[83] Expanding the Reach and Impact of Consumer e-Health Tools 2006, p. 59.

[84] Expanding the Reach and Impact of Consumer e-Health Tools 2006, citing Institute of Medicine, Health Literacy: a Prescription to End Confusion. Washington, DC: National Academies Press, 2004; and U.S. Department of Health and Human Services, Healthy People 2010. 2nd ed. Washington, DC: U.S. Government Printing Office, November 2000.

[85] Kutner, M. et al., Health Literacy of America’s Adults: Results from the 2003 National Assessment of Health Literacy. Washington, DC: U.S. Department of Education, National Center for Health Education Statistics, 2006. NCES Pub. No. 2006-483. Available at: http://nces.ed.gov/pubs2006/2006483.pdf.

[86] Eichner J. and P. Dullabh, Accessible Health Information Technology (Health IT) for Populations With Limited Literacy: A Guide for Developers and Purchasers of Health IT. Rockville, MD: U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality, October 2007. AHRQ Pub. No. 08-0010-EF.

[87] Kutner et al. 2006, p. 1; Paasche-Orlow, M.K. et al., The Prevalence of Limited Health Literacy. Journal of General Internal Medicine, 2005. 20(2): p. 175.

[88] Kutner et al. 2006, p. 11.

[89] Paasche-Orlow 2005, p. 179.

[90] Demographics of Internet Users. Washington, DC: Pew Internet & American Life Project, survey conducted August 2008. Available at: http://www.pewinternet.org/trends.asp.

[91] Pew Internet & American Life Project, Demographics of Internet Users.

[92] Fox 2005, p. 2.

[93] Pew Internet & American Life Project, Demographics of Internet Users.

[94] Pew Internet & American Life Project, Demographics of Internet Users.

[95] Pew Internet & American Life Project, Demographics of Internet Users.

[96] Expanding the Reach and Impact of Consumer e-Health Tools 2006, p. 44.

[97] Expanding the Reach and Impact of Consumer e-Health Tools 2006.

[98] Pew Internet & American Life Project, Demographics of Internet Users.

[99] Pew Internet & American Life Project, Demographics of Internet Users.

[100] Horrigan, John B., Home Broadband 2008. Washington, DC: Pew Internet & American Life Project, 2008. Available at: http://www.pewinternet.org/PPF/r/257/report_display.asp.

[101] Horrigan 2008.

[102] Expanding the Reach and Impact of Consumer e-Health Tools 2006, citing Institute of Medicine, Speaking of Health: Assessing Health Communication Strategies for Diverse Populations. Washington, DC: National Academies Press, 2002.

[103] Estimates from: Baker, L. et al., Use of the Internet and E-mail for Health Care Information: Results from a National Survey. Journal of the American Medial Association, 2003. 289(18): p. 2400-2406; Pew Internet & American Life Project, Internet Activities; RAND Corporation, Consumer Use of Information When Making Treatment Decisions. Chicago, IL: BlueCross BlueShield Association, 2005. Available at: http://www.bcbs.com/blueresources/cost/consumer-use-of-information.html; Rutten L.F., et al., Cancer Communication: Health Information National Trends Survey 2003 and 2005. Washington, DC: National Institutes of Health, National Cancer Institute, 2007. NIH Pub. No. 07-6214. Available at: http://hints.cancer.gov/hints/docs/hints_report.pdf; and Ybarra, M. and M. Suman, Reasons, Assessments and Actions Taken: Sex and Age Differences in Uses of Internet Health Information. Health Education Research, 2008. 23(3): p. 512-521.

[104] Rutten et al. 2007.

[105] Fox 2006.

[106] RAND Corporation 2005.

[107] Health Poll Report Survey. Menlo Park, CA: Henry J. Kaiser Family Foundation, conducted June 2-5, 2005. Available at: http://www.kff.org/kaiserpolls/pomr071805oth.cfm.

[108] Rutten et al. 2007, p. 13.

[109] Expanding the Reach and Impact of Consumer e-Health Tools 2006, citing Caregiving in the U.S. National Alliance for Caregiving and AARP, 2004.

[110] Fox 2006, p. 4.

[111] RAND Corporation 2005.

[112] Fox, Susannah, Prescription Drugs Online. Washington, DC: Pew Internet & American Life Project, 2004, p. 2.

[113] Fox 2004, p. 6; and Baker et al. 2003.

[114] Fox 2004, p. 5.

[115] Baker et al. 2003.

[116] von Knoop et al. 2003, p. 16.

[117] O’Connor et al. 2007, p. 718-719.

[118] Rutten et al. 2007, p. 13.

[119] Frost and Massagli 2008.

[120] Baker et al. 2003.

[121] Expanding the Reach and Impact of Consumer e-Health Tools 2006, citing Poll Indicates Strong Support for New Medical Technologies. The Wall Street Journal Online, October 7, 2005.

[122] Goldner, Melinda. Using the Internet and Email for Health Purposes: The Impact of Health Status. Social Science Quarterly, 2006. 87(3): p. 690-710.

[123] Beckjord et al. 2007. p. e20.

[124] von Knoop et al. 2003, p. 18.

[125] Beauchamp and Eng 2006, p. 10.

[126] Connecting Americans to Their Healthcare: Final Report 2004, p. 66.

[127] Beauchamp and Eng 2006, p. 10.

[128] RAND Corporation 2005.

[129] Harris and Beeuwkes 2008.

[130] Weingart, S.N. et al., Who Uses the Patient Internet Portal? The PatientSite Experience. Journal of the American Medical Informatics Association, 2006. 13(1): p. 91.

[131] Weingart et al. 2006; and Swartz, S., T. Cowan, and I. Batista, Using Claims Data to Examine Patients Using Practice-based Internet Communication: Is There a Clinical Digital Divide? Journal of Medical Internet Research, 2004. 6(1): p. e1.

[132] NORC 2008, citing  D. Lansky, A National Agenda for Personal Health Records? How Will We Really Empower Consumers in the Next Decade? presentation for Connecting for Health, 2006.

[133] Ralston, James D., Patient Web Services Integrated with a Shared Medical Record: Patient Use and Satisfaction. Journal of the American Medical Information Association, 2007. 14: p. 798-806.

[134] Connecting Americans to Their Healthcare: A Common Framework for Networked Personal Health Information 2006, p. 2.

[135] Connecting Americans to Their Healthcare: Final Report 2004, p. 48.

[136] Tang and Lansky 2005, p. 1293.

[137] NORC 2008, citing Aetna: Nearly Two-Thirds of Americans Are Not Familiar with Personal Health Records, a Resource Available to Millions of Consumers.

[138] Schiavo, Renata, The Rise of e-Health: Current Trends and Topics on Online Health Communications. Journal of Medical Marketing, 2008. 8(1): p. 9-18; Eysenbach G. et al., Empirical Studies Assessing the Quality of Health Information for Consumers on the World Wide Web. Journal of the American Medical Association, 2002. 287(20): 2691-2700.

[139] Eysenbach 2002.

[140] Fox 2006, citing CDC Wonder Data 2010. Healthy People 2010 Health Communication Focus Area 11, Objective 11-4.

[141] E-Health and the Elderly: How Seniors Use the Internet for Health Information 2005; Fox 2006, p. 11.

[142] Fox, Susannah, Recruit Doctors. Let e-Patients Lead. Go Mobile. Posted on e-patients.net on March 6, 2008. Available at: http://www.e-patients.net/archives/2008/03/recruit_doctors.html.

[143] Etter 2006, p.s33.

[144] Expanding the Reach and Impact of Consumer e-Health Tools 2006, p. 94.

[145] Eysenbach 2002.

[146] RAND Corporation 2005.

[147] Ybarra and Suman 2008.

[148] Fox 2006, p. 9.

[149] Ybarra and Suman 2008.

[150] Expanding the Reach and Impact of Consumer e-Health Tools 2006.

[151] Ralston 2007, p. 803; Tang and Lansky 2005, p. 1293.

[152] Ralston 2007, p. 803.

[153] Fox 2006, p. 7.

[154] Tang and Lansky 2005, p. 1294.

[155] von Knoop et al. 2003, p. 25.

[156] Fox 2006, p. 10; E-Health and the Elderly: How Seniors Use the Internet for Health Information 2005, p. 10; Ybarra and Suman 2008; Siegel et al. 2006, p. 6.

[157] Baker et al. 2003.

[158] Harris and Beeuwkes 2008.

[159] RAND Corporation 2005.

[160] Expanding the Reach and Impact of Consumer e-Health Tools 2006.

[161] Beauchamp and Eng 2006.

[162] Murray, E. et al., Interactive Health Communication Applications for People with Chronic Disease, Cochrane Database of Systematic Reviews, 2005.

[163] Wantland, D.J. et al., The Effectiveness of Web-based vs. Non-Web-based Interventions: A Meta-analysis of Behavioral Change Outcomes. Journal of Medical Internet Research, 2004. 6(4): p. e40.

[164] Expanding the Reach and Impact of Consumer e-Health Tools 2006.

[165] Expanding the Reach and Impact of Consumer e-Health Tools 2006, citing Lieberman, D., Management of Chronic Pediatric Diseases with Interactive Health Games: Theory and Research Findings.Journal of Ambulatory Care Management, 2001. 24: p. 26-38.

[166] von Knoop et al. 2003, p. 16.

[167] Expanding the Reach and Impact of Consumer e-Health Tools 2006.

[168] Murray et al 2005, p. 18; Rand Corporation 2005.

[169] NORC 2008, p. 3; Blumenthal and Glaser 2007.

[170] 2007 National Healthcare Disparities Report. Rockville, MD: U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality; February 2008. AHRQ Pub. No. 08-0041; and Mead, Holly et al., “Racial and Ethnic Disparities in U.S. Health Care: A Chartbook.” New York, NY: The Commonwealth Fund, 2008.

[171] Rutten et al. 2007; Fox 2006.

[172] Fox 2006.

[173] Kutner et al. 2006, p. 18.

[174] U.S. National Library of Medicine, “MedlinePlus Survey Results: 2005” webpage. http://www.nlm.nih.gov/medlineplus/survey2005/index.html.

[175] Rutten et al. 2007.

[176] Baker et al. 2003.

[177] Rutten et al. 2007.

[178] U.S. National Library of Medicine, “MedlinePlus Survey Results 2005” webpage.

[179] Fox 2006, p. 2.

[180] Rutten et al. 2007.

[181] Estabrook, Leigh, Evans Witt, and Lee Rainie, Information Searches that Solve Problems. Washington, DC: Pew Internet & American Life Project, 2007. Available at: http://www.pewinternet.org/pdfs/Pew_UI_LibrariesReport.pdf.

[182] Goldner 2006, p. 698.

[183] Fox, Susannah, E-Patients with a Disability or Chronic Disease. Washington, DC: Pew Internet & American Life Project, 2007.

[184] Rand Corporation 2005.

[185] Ybarra and Suman 2008.

[186] Fox 2006, p. 4.

[187] Fox 2006; Rutten et al. 2007.

[188] Kaiser Family Foundation. 2005. Health Poll Report Survey (Conducted June 2-5, 2005) http://www.kff.org/kaiserpolls/pomr071805oth.cfm

[189] Ybarra and Suman 2008.

[190] E-Health and the Elderly: How Seniors Use the Internet for Health Information 2005, p. 6.

[191] Fox 2006.

[192] Fox 2006, p. 3

[193] Ybarra and Suman 2008.

[194] Expanding the Reach and Impact of Consumer e-Health Tools 2006.

[195] Rutten et al. 2007.

[196] Fox 2004.

[197] Fox 2007.

[198] Rutten et al. 2007.

[199] Rutten et al. 2007.

[200] Expanding the Reach and Impact of Consumer e-Health Tools 2006, citing DH Gustafson et al., Effect of Computer Support on Younger Women with Breast Cancer. Journal of General Internal Medicine, 2001.16: p. 435-445.

[201] Rutten et al. 2007.

[202] Baker et al. 2003; Beckjord et al. 2007.

[203] Beckjord et al. 2007.

[204] Goldner 2006, p. 702.

[205] Beckjord et al. 2007.

[206] E-Health and the Elderly: How Seniors Use the Internet for Health Information 2005; Fox 2006, p. 4.

[207] Ralston 2007, p. 802; Weingart et al. 2006, p. 94.

[208] Weingart et al. 2006.

[209] Weingart et al. 2006, p. 94.

[210] Ralston 2007, p. 802.

[211] NORC 2008, citing a survey conducted by the Foundation for Accountability (FACCT) as part of the Markle Foundation’s Connecting for Health Collaborative.

[212] Weingart et al. 2006, p, 94; Tang and Lansky 2005.

[213] Tang and Lansky 2005, p. 1293.

[214] Thompson and Brailer 2004.

[215] Hoover 2006.

[216] Survey Finds Americans Want Electronic Personal Health Information to Improve Own Health Care 2006, p. 3.

[217] Connecting Americans to Their Healthcare: Final Report 2004, p. 54.

[218] Many Nationwide Believe in the Potential Benefits of Electronic Medical Records and are Interested in Online Communications with Physicians, 2005.

[219] Harris and Beeuwkes 2008, p. 10.

[220] Expanding the Reach and Impact of Consumer e-Health Tools 2006.

[221] Expanding the Reach and Impact of Consumer e-Health Tools 2006, citing Children, the Digital Divide, and Federal Policy. Menlo Park, CA: Henry J. Kaiser Foundation, 2004.

[222] NORC, The Underserved and Health Information Technology—Issues and Opportunities. Washington, DC: U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, 2008 (not yet released).

[223] “Meaningful access” may also entail items like the availability of technical support and sites with appropriate content. Expanding the Reach and Impact of Consumer e-Health Tools 2006, citing Communicating Health: Priorities and Strategies for Progress. Washington, DC: U.S. Department of Health and Human Services, 2003.

[224] Expanding the Reach and Impact of Consumer e-Health Tools 2006.

[225] Expanding the Reach and Impact of Consumer e-Health Tools 2006.

[226] von Knoop et al. 2003.

[227] NORC 2008 citing Aetna: Nearly Two-Thirds of Americans Are Not Familiar with Personal Health Records, a Resource Available to Millions of Consumers.  

[228] Connecting Americans to Their Healthcare: Final Report 2004.

[229] Connecting Americans to Their Healthcare: Final Report 2004.

[230] Crutzen, Rik et al., Internet-delivered Interventions Aimed at Adolescents: A Delphi Study on Dissemination and Exposure. Health Education Research, 2008. 23(3): p. 427-439.

[231] Siegel et al. 2006, p. 6.

[232] E-Health and the Elderly: How Seniors Use the Internet for Health Information 2005, p. 7.

[233] Fox 2008.

[234] Goldner 2006, p. 705; von Knoop et al. 2003, p 203.

[235] Stone, J.H., Communication between Physicians and Patients in the Era of E-Medicine. New England Journal of Medicine, 2007. 356(24): p. 2451-2455.

[236] Liederman, E.M. et al., Web Messaging: The Impact on Message Volume and Satisfaction. Journal of General Internal Medicine, 2005. 20(1): p. 52-57. 

[237] Adler, Kenneth G., Web Portals in Primary Care: An Evaluation of Patient Readiness and Willingness to Pay for Online Services. Journal of Medical Internet Research, 2006. 8(4): p. e26; citing Anne Kittler et al., Primary Care Physician Attitudes towards Using a Secure Web-based Portal Designed to Facilitate Electronic Communication with Patients. Informatics in Primary Care, 2004. 12(3): p. 129-138.

[238] Sciamanna, Christopher N. et al., Patient Access to U.S. Physicians Who Conduct Internet or E-mail Consults. Journal of General Internal Medicine, 2007. 22(3): p. 378-381; Stone 2007.

[239] Beauchamp and Eng 2006, p. 10.

[240] Beauchamp and Eng 2006, p. 7; Many Nationwide Believe in the Potential Benefits of Electronic Medical Records and are Interested in Online Communications with Physicians 2005.

[241] Beauchamp and Eng 2006, p. 23.

[242] Beauchamp and Eng 2006, p. 26.

[243] Expanding the Reach and Impact of Consumer e-Health Tools 2006, p. 88.

[244] Beckjord et al. 2007.

[245] Survey Finds Americans Want Electronic Personal Health Information to Improve Own Health Care 2006, p.3.

[246] NORC 2008, citing L. Moreno, et al., Personal Health Records: What Do Underserved Consumers Want. Washington, DC: Mathematica Policy Research, 2007. Issue Brief no. 4. 

[247] Tang and Lansky 2005, p. 1294.

[248] Lebo, Harlan, The 2007 Digital Future Report: Surveying the Digital Future, Year Six. Los Angeles, CA: USC Annenberg School, Center for the Digital Future, 2007, p. 79.

[249] Fox 2004, p. 5.

[250] Rutten et al. 2007.

[251] Lebo 2007, p. 52.

[252] Hesse 2008, p. 4.

[253] Hesse 2008; Expanding the Reach and Impact of Consumer e-Health Tools 2006.

[254] Connecting Americans to Their Healthcare: Final Report 2004, p. 17.

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