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Dreams and Nightmares: Practical and Ethical Issues for Patients and Physicians Using Personal Health Records

Published online by Cambridge University Press:  01 January 2021

Matthew Wynia  and
Kyle Dunn
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Extract

The term “Electronic Health Records” (EHR) means something different to each of the stakeholders in health care, but it always seems to carry a degree of emotional baggage. Increasingly, EHRs are advertized as a nearly unmitigated good that will transform medical care, improve safety and efficiency, allow better patient engagement, and open the door to an era of cheap, effective, timely, and patient-centered care. Indeed, for some EHR proponents the benefits of adopting them are so obvious that adoption has become an end in itself. But for others — and especially for a number of skeptical practitioners and patients — EHR is a code word that portends the corporate transformation of health care delivery, the loss of patient privacy, the demand that patients bear more responsibility in health care, and the unreflective takeover of the health care system by people who do not understand medical care or how health care relationships unfold.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 38 , Issue 1 , Spring 2010 , pp. 64 - 73
Copyright
Copyright © American Society of Law, Medicine and Ethics 2010

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References

Roberts, D., “Paper Kills'” Should be Health Care's Mantra,” Patient Safety & Quality Health Care, May/June 2006, at 56–7, available at <http://www.himss.org/content/files/200606l4_PaperKills_Roberts.pdf> (last visited February 14, 2010).Google Scholar
Diamond, C. C. and Shirky, C., “Health Information Technology: A Few Years of Magical Thinking?” Health Affairs, Web Exclusive, April 19, 2008.Google Scholar
Harmon, L. B., ed., Ethical Challenges in the Management of Health Information (Boston: Jones and Bartlett Publishers, 2006): 139–170; Hartzband, P. and Groopman, J., “Off the Record: Avoiding the Pitfalls of Going Electronic,” New England Journal of Medicine 358, no. 16 (2008): 1656–1658; Silverstein, S., “Healthcare IT Backwater: The $20 Billion Abyss? Case One,” Health Care Renewal Blog, February 7, 2009, available at <http://hcrenewal.blogspot.com/2009/02/hospital-it-backwater-20-billion-abyss.html> (last visited December 16, 2009).Google Scholar
Markle Foundation, “Connecting Americans to Their HealthCare: Final Report,” Working Group on Policies for Electronic Information Sharing between Doctors and Patients, July 2004, at 14, available at <http://www.connectingforhealth.org/resources/wg_eis_final_report_0704.pdf> (last visited December 16, 2009).+(last+visited+December+16,+2009).>Google Scholar
Blumenthal, D., “The Federal Role in Promoting Health Information Technology,” The Commonwealth Fund, Perspectives in Health Reform, January 2009, available at <http://www.commonwealthfund.org/Content/Publications/Perspectives-on-Health-Reform-Briefs/2009/Jan/The-Federal-Role-in-Promoting-Health-Information-Technology.aspx> (last visited December 16, 2009).Google Scholar
Sprague, L., Personal Health Records: The People's Choice? National Health Policy Forum, Issue Brief 820, November 30, 2006, available at <http://www.nhpf.org/library/issue-briefs/IB820_PHRs_11-30-06.pdf> (last visited December 16, 2009).Google Scholar
Heubusch, K., “PHRs for the Masses? Consumers Say They Are Interested in PHRs, but Will They Use Them?” Journal of the American Health Information Management Association 78, no. 4 (2007): 34–36.Google Scholar
Lewis, M. Jr., “Planning for a PHR World,” Medical Economics 85, no. 17 (2008): 20–22.Google Scholar
Norris, J., Dossia and Doctors: An Employer-Driven Personal Health Record and the Provider, John-Norris website, August 29, 2007, available at <http://john-norris.net/wp-content/uploads/2007/09/dossia_norris.pdf> (last visited December 16, 2009).Google Scholar
Barrett, M., “The Employer Perspective,” in Gearon, C. J., ed., Perspectives on the Future of Personal Health Records (Oakland: California HealthCare, 2007): 19–22.Google Scholar
Steinbrook, R., “Personally Controlled Online Health Data: The Next Big Thing in Medical Care?” New England Journal of Medicine 358, no. 16 (2008): 1653–1656.Google Scholar
Barlow, S., Johnson, J., and Steck, J., “The Economic Effect of Implementing an Electronic Medical Record in an Outpatient Clinical Setting,” Journal of Healthcare Information Management 18, no. 1 (2004): 46–51.Google Scholar
McCullagh, D., “Q&A: Electronic Health Records and You,” CNET Tech News, May 19, 2009, available at <http://www.cbsnews.com/stories/2009/05/19/tech/cnettechnews/main5025516.shtml> (last visited December 16, 2009).Google Scholar
Peddicord, D., The American Recovery and Reinvestment Act of 2009 (HR 1), Press Release, American Medical Informatics Association, February 16, 2009, available at <http://www.amia.org/files/shared/The_American_Recovery_and_Reinvestment_Act.pdf> (last visited December 16, 2009).+(last+visited+December+16,+2009).>Google Scholar
McKnight's Long-term Care News, “Electronic Health Records Timeline in Stimulus Bill Could Be Unrealistic, Senior Health IT Official Says,” May 19, 2009, available at <http://www.mcknights.com/Electronic-health-records-timeline-in-stimulus-bill-could-be-unrealistic-senior-health-IT-official-says/article/137034/> (last visited December 16, 2009).+(last+visited+December+16,+2009).>Google Scholar
National Committee On Vital And Health Statistics, U.S. Department of Health and Human Services, Personal Health Records and Personal Health Record Systems, February 2006, available at <http://www.ncvhs.hhs.gov/0602nhiirpt.pdf> (last visited December 16, 2009) [hereinafter NCVHS].+(last+visited+December+16,+2009)+[hereinafter+NCVHS].>Google Scholar
Centers for Medicare and Medicaid, U.S. Department of Health and Human Services, “Personal Health Records: Overview,” September 25, 2008, available at <http://www.cms.hhs.gov/perhealthrecords/> (last visited December 16, 2009); “Vendor Solicitation,” Noridian Administration Services, LLC, 2008, available at <https://www.noridianmedicare.com/phr/forvendors.htm> (last visited March 2, 2009).+(last+visited+December+16,+2009);+“Vendor+Solicitation,”+Noridian+Administration+Services,+LLC,+2008,+available+at++(last+visited+March+2,+2009).>Google Scholar
Bourgeois, F. T., Simons, W. W., Olson, K., Brownstein, J. S., and Mandl, K. D., “Evaluation of Influenza Prevention in the Workplace Using a Personally Controlled Health Record: Randomized Controlled Trial,” Journal of Medical Internet Research 10, no. 1 (2008): e5, available at <http://wwwjmir.org/2008/1/e5/> (last visited December 16, 2009); Kukafka, R., Ancker, J. S., Chan, C., Chelico, J., Khan, J., and Mortoti, S. et al., “Redesigning Electronic Health Record Systems to Support Public Health,” Journal of Biomedical Informatics 40, no. 4 (2007): 398–409.CrossRefGoogle Scholar
See Steinbrook, , supra note 11.Google Scholar
See Diamond, and Shirky, , supra note 2.Google Scholar
See Sprague, , supra note 6; Heubusch, , supra note 7; and Steinbrook, supra note 11.Google Scholar
Gellman, R., Personal Health Records: Why Many PHRs Threaten Privacy, World Privacy Forum, Legal and Policy Analysis, February 20, 2008, available at <http://www.world-privacyforum.org/pdf/WPF_PHR_02_20_2008fs.pdf> (last visited December 17, 2009).Google Scholar
See Barrett, , supra note 10.Google Scholar
Kuraitis, V. and Kibbe, D., “Leavitt's Framework Shoehorns the HIPAA Privacy Rule onto Your Own Personal Health Information,” e-CareManagement Blog, December 17, 2008, available at <http://e-caremanagement.com/leavitts-framework-shoe-horns-the-hipaa-privacy-rule-onto-your-personal-health-information/> (last visited December 17, 2009).Google Scholar
Hibbard, J. H. and Cunningham, P. J., “How Engaged Are Consumers in Their Health and Health Care, and Why Does It Matter?” Center for Studying Health System Change, Research Brief No. 8, October 2008, available at <http://www.hschange.com/CONTENT/1019/> (last visited December 17, 2009).Google Scholar
Bell, D., Raiffa, H., and Tversky, A., eds., Decision Making: Descriptive, Normative and Prescriptive Interactions (Cambridge: Cambridge University Press, 1988): at 1–32; Harris, R., “Introduction to Decision Making,” Virtual Salt website, available at <http://www.virtualsalt.com/crebook5.htm> (last visited February 28, 2009).CrossRefGoogle Scholar
Markle Foundation, Americans Overwhelmingly Believe Electronic Health Records Could Improve Their Health: Nearly 9 in 10 Say Privacy Practices Are a Factor in Their Decision to Sign Up for One, Connecting for Health News Release, June 2008, available at <http://www.connectingforhealth.org/resources/ResearchBrief-200806.pdf> (last visited December 17, 2009).+(last+visited+December+17,+2009).>Google Scholar
Wynia, M. K., “Physicians' Views on Using Personal Health Records: Results of a National Physician Survey,” Health Information and Management Systems Society Annual Meeting, March 3, 2010, Atlanta, GA (presentation slides available from author).Google Scholar
See Sprague, , supra note 6.Google Scholar
McCormack, J., “Picking the Right Process: Deciding the Best Way to Submit Claims,” AMNews, February 18, 2008, available at <http://www.ama-assn.org/amednews/2008/02/18/bisa0218.htm> (last visited December 17, 2009).Google Scholar
The Informed Patient, “Incentives Push More Doctors to E-Prescribe,” Wall Street Journal, January 21, 2009, available at <http://online.wsj.com/article/SB123249533946000191.html> (last visited December 17, 2009).+(last+visited+December+17,+2009).>Google Scholar
Baker, L., Wagner, T. H., Singer, S., and Bundorf, M. K., “Use of the Internet and E-mail for Health Care Information: Results of a National Survey,” JAMA 289, no. 18 (2003): 2400–2406.CrossRefGoogle Scholar
See NCVHS, supra note 16.Google Scholar
See Markle Foundation, supra note 4, at 51.Google Scholar
Halamka, J. D., Mandl, K. D., and Tang, P. C., “Early Experiences with Personal Health Records,” Journal of the American Medical Informatics Association 15, no. 1 (2008): 1–7.CrossRefGoogle Scholar
Tang, P. C., Ralson, M., Arrigotti, M. F., Qureshi, L., and Graham, J., “Comparison of Methodologies for Calculating Quality Measures Based on Administrative Data Versus Clinical Data from an Electronic Health Record System: Implications for Performance Measures,” Journal of the American Medical Informatics Association 14, no. 1 (2007): 10–15.CrossRefGoogle Scholar
See Hartzband, and Groopman, , supra note 3.Google Scholar
Markle Foundation, “Common Framework for Networked Personal Health Information,” Connecting for Health, available at <http://www.connectingforhealth.org/phti/docs/Overview.pdf> (last visited December 17, 2009).+(last+visited+December+17,+2009).>Google Scholar
See Steinbrook, , supra note 11.Google Scholar
Kibbe, D., “The Clinical Technology Perspective,” in Gearon, , ed., supra note 10, at 16–19.Google Scholar
See Barlow, , Johnson, , and Steck, , supra note 12; DesRoches, C., Campbell, E. G., and Rao, S. R. et al., “Electronic Health Records in Ambulator Care: A National Survey of Physicians,” New England Journal of Medicine 359, no. 1 (2008): 50–60.Google Scholar
Rippen, H., “Summary of the Findings Assessing the Economics of EMR Adoption and Successful Implementation in Physician Small Office Settings,” Presentation, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services, available at <http://mhcc.maryland.gov/electronichealth/ehr/ASPE-EMRAdopt.ppt> (last visited February 14, 2010).Google Scholar
Terry, K., “PHR Reality Check: Will PHRs Rule the Waves or Roll Out with the Tide?” HHNMagazine, September 2008, available at <http://www.hhnmag.com/hhnmag_app/jsp/articledisplay.jsp?dcrpath=HHNMAG/Article/data/08AUG2008/0808HHN_FEA_MedRecords&domain=HHNMAG> (last visited December 17, 2009).Google Scholar
Sands, D. Z., “The Physician Perspective,” in Gearon, , ed., supra note 10, at 13–16.Google Scholar
See Terry, , supra note 43.Google Scholar
Versel, N., “HIPAA Expands to Personal Health Records – Just Not Google's or Microsoft's, If You Ask Them,” BNET Healthcare, April 7, 2009, available at <http://industry.bnet.com/healthcare/1000480/is-google-above-the-law/> (last visited December 17, 2009).Google Scholar
See Gellman, , supra note 22.Google Scholar
See Markle Foundation, supra note 38.Google Scholar
“Nationwide Privacy and Security Framework for Electronic Exchange of Individually Identifiable Health Information,” Office of the Coordinator of Health Information Technology, U.S. Department of Health and Human Services, December 2008, available at <http://healthit.hhs.gov/portal/server.pt/gateway/PTARGS_0_10731_848088_0_0_18/Nation-widePS_Framework-5.pdf> (last visited December 17, 2009).+(last+visited+December+17,+2009).>Google Scholar
See Kuraitis, and Kibbe, , supra note 24.Google Scholar
Detmer, D., Bloomrosen, M., Raymond, B., and Tang, P., “Integrated Personal Health Records: Transformative Tools for Consumer-Centric Care,” BMC Medical Informatics and Decision Making 8 (2008): 45, available at <http://www.biomed-central.com/1472-6947/8/45> (last visited March 1, 2009).CrossRefGoogle Scholar
See Markle Foundation, supra note 38.Google Scholar
Levinson, W., Kao, A., Kuby, A., and Thisted, R. A., “Not All Patients Want to Participate in Decision Making: A National Study of Public Preferences,” Journal of General Internal Medicine 20, no. 6 (2005): 531–535.CrossRefGoogle Scholar
Barry, D., “Good for Whatever Ails You,” June 21, 1998, reprinted at <http://www.freewebs.com/stopped_our_statins/funnystuff.htm> (last visited December 17, 2009).Google Scholar
See Hibbard, and Cunningham, , supra note 25.Google Scholar
Id.; Mosen, D. M., Schmittdiel, J., Hibbard, J., Sobel, D., Remmers, C., and Bellows, J., “Is Patient Activation Associated with Outcomes of Care for Adults with Chronic Conditions?” Journal of Ambulatory Care Management 30, no. 1 (2007): 21–29; Norris, S. L., Lau, J., Smith, S. J., Schmid, C. H., and Engelgau, M., “Self-Management Education for Adults with Type 2 Diabetes: A Meta-Analysis of the Effect on Glycemic Control,” Diabetes Care 25, no. 7 (2002): 1159–1171.CrossRefGoogle Scholar
Hibbard, J. H., Mahoney, E. R., Stock, R., and Tusler, M., “Do Increases in Patient Activation Result in Improved Self-Management Behaviors?” Health Services Research 42, no. 4(2007): 1443–1463.CrossRefGoogle Scholar