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The Evolution of Patient Advocacy: From Rights to Reality

Published online by Cambridge University Press:  24 March 2025

Heidi B. Kummer
Heidi B. Kummer*
Affiliation:
Patient Advocate Certification Board, Boston, MA, USA
*
Email: hbkummer@pacboard.org
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Abstract

Fifty years ago, George J. Annas and Joseph Healey introduced the concept of a “patient rights advocate” in their seminal 1974 article published in the Vanderbilt Law Review. Annas expanded this vision in the ACLU Handbook, The Rights of Hospitalized Patients, later broadening its scope to all medical settings. This essay traces the evolution of patient advocacy, highlighting pivotal milestones: the advent of cancer navigators, the rise of the patient safety movement, the establishment of patient advocacy organizations, the development of Patient Advocate Offices in hospitals, and the emergence of independent advocates with board certification. It also examines the impact of advocacy on healthcare outcomes, costs, and patient-provider satisfaction, and explores future directions for this vital and growing profession.

Keywords

Patient AdvocacyPatient RightsPatient Centered CareInformed ConsentMedical EthicsHealth Care Disparities

Information

Type
Articles
Information
American Journal of Law & Medicine , Volume 50 , Issue 3-4 , December 2024 , pp. 222 - 233
Copyright
© 2025 The Author(s). Published by Cambridge University Press on behalf of American Society of Law, Medicine & Ethics and Trustees of Boston University

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References

1 George J. Annas & Joseph M. Healey, Jr., The Patient Rights Advocate: Redefining the Doctor-Patient Relationship in the Hospital Context, 27 Vand. L. Rev. 243, 243 (1974) (biographical notes).

2 Id. at 245, 248–251, 266–68 (discussing balance of power between patients and doctors and patients and hospitals, and presenting model bill of patient rights).

3 Milestone Documents: Brown v. Board of Education (1954), Nat’l Archives, https://www.archives.gov/milestone-documents/brown-v-board-of-education [https://perma.cc/5N2G-P9J7]; Milestone Documents: Civil Rights Act (1964), Nat’l Archives, https://www.archives.gov/milestone-documents/civil-rights-act [https://perma.cc/G8ZV-NVED].

4 Interview by Albert S. Lyons & Florence Daniels with Ruth Ravich, in N.Y.C., N.Y. (Apr. 11, 1995) [hereinafter Interview with Ruth Ravich], https://archives.mssm.edu/aa107-int057;dacs?sf_culture=nl [https://perma.cc/8CDN-TGFX].

5 Id.

6 Patient’s Bill of Rights (Am. Hosp. Ass’n 1973) (revised 1992), https://www.americanpatient.org/american-hospital-association-patients-bill-of-rights/ [https://perma.cc/9Q3F-XWW7]; Am. Hosp. Ass’n, The Patient

Care Partnership: Understanding Expectations, Rights and Responsibilities (2003), https://www.aha.org/other-resources/patient-care-partnership [https://perma.cc/V47B-G9G8] (replacing the Bill of Rights with a plain language brochure).

7 Annas & Healey, supra note 1, at 252.

8 Id. at 269.

9 Laura A. Barrett, Tuskegee Syphilis Study of 1932-1973 and the Rise of Bioethics as Shown Through Government Documents and Actions, 47 Documents to the People 11, 11–14 (2019).

10 Annas & Healey, supra note 1, at 269.

11 Id. at 245.

12 Id. at 264, 266–68.

13 Id. at 257–58.

14 Id. at 250, 263, 266–67.

15 Id. at 258.

16 Id. at 264.

17 George J. Annas, The Rights of Hospital Patients: The Basic ACLU Guide to a Hospital Patient’s Rights (1975).

18 George J. Annas, The Rights of Patients: The Basic ACLU Guide to Patient Rights (Humana Press, 2d ed. 1992) [hereinafter Annas, The Rights of Patients]. The guide is currently in its third edition, George J. Annas, The Rights of Patients: The Authoritative ACLU Guide to the Rights of Patients (N.Y. Univ. Press, 3d ed. 2004).

19 Civil Rights and Institutionalized Persons Act (CRIPA) of 1980, 42 U.S.C. §§ 1997–1997j.

20 Protection & Advocacy for Mentally Ill Individuals (PAIMI) Act of 1986, 42 U.S.C. §§ 10801–10851.

21 See Annas, The Rights of Patients, supra note 18, at 37–40 (discussing the patient’s rights requirements of JHACO’s 1989 accreditation manual for hospitals).

22 Shreya Kangovi et al., From Rhetoric to Reality — Community Health Workers in Post-Reform U.S. Health Care, 372 New Eng. J. Med. 2277, 2277 (2015).

23 Id.

24 Our History, Boston Health Care for the Homeless Program, https://www.bhchp.org/about/our-history/ [https://perma.cc/8CZG-LTJB] (last visited Sept. 26, 2024); see generally Tracy Kidder, Rough Sleepers (2023); James O’Connell, Stories from the Shadows: Reflections of a Street Doctor (2015).

25 In the Company of the Poor: Conversations with Dr. Paul Farmer and Fr. Gustavo Gutiérrez 14 (Michael Griffin & Jennie Weiss Block eds., 2013); Wesler Lambert, PIH Model for Accompaniment Informs Global Response to Shortage of Health Workers, Partners in Health (Apr. 1, 2007), https://www.pih.org/article/pih-model-for-accompaniment-informs-global-response-to-shortage-of-hea [https://perma.cc/EN37-P9RX] (last visited Sept. 26, 2024).

26 Interview with Ruth Ravich, supra note 4; Health Advocacy Master’s and Certificate Programs, Sarah Lawrence Coll., https://www.sarahlawrence.edu/health-advocacy [https://perma.cc/UP7W-WTTF] (last visited Sept. 26, 2024).

27 See, e.g., Patient Advoc. Certification Bd., https://www.pacboard.org [https://perma.cc/G7BT-RHGE] (last visited Sept. 15, 2024); Public Health Advocacy Certificate Program, Johns Hopkins Bloomberg Sch. of Pub. Health, https://publichealth.jhu.edu/academics/public-health-advocacy-certificate-program [https://perma.cc/K267-SUED] (last visited Sept. 25, 2024).

28 Harold P. Freeman & Rian L. Rodriguez, History and Principles of Patient Navigation, 117 Cancer 3539, 3540 (2011).

29 Id.

30 Id. at 3540–41.

31 Id.

32 Id. at 3541. See also Harold P. Freeman, Barbara J. Muth & Jon F. Kerner, Expanding Access to Cancer Screening and Clinical Follow-Up Among the Medically Underserved, 3 Cancer Prac. 19 (1995). A similar study aimed at decreasing colon cancer disparities by increasing screening rates in an inner-city population was recently done at New York’s Montefiore Einstein Comprehensive Cancer Center. As a sign of the times, the researchers employed an AI virtual patient navigator or conversational chat-bot called MyEleanor that provided the initial outreach to patients who either missed or canceled their colonoscopy appointments. Patient volume increased and completion rates for patients who did not show for initial appointment nearly doubled using the AI patient navigator tool to facilitate access and appointments. Alyson B. Moadel et al., AI Virtual Patient Navigation to Promote Re-Engagement of U.S. Inner City Patients Nonadherent with Colonoscopy Appointments: A Quality Improvement Initiative, 42 J. Clinical Oncology (2024 ASCO Annual Meeting I) 100 (2024).

33 42 U.S.C. § 256a.

34 42 U.S.C. § 18031(i); see also Suzanne M. Kirchhoff, Cong. Rsch. Serv., R43243, Health Insurance Exchanges: Health Insurance “Navigators” and In-Person Assistance 4–7 (2014) (detailing navigator eligibility and application process).

35 42 U.S.C. § 256a-1.

36 Asia Friedman et al., Facilitators and Barriers to Care Coordination in Patient-Centered Medical Homes (PCMHs) from Coordinators’ Perspectives, 29 J. Am. Bd. Fam. Med. 90, 93 (2016).

37 Harold P. Freeman, The Origin, Evolution, and Principles of Patient Navigation, 21 Cancer Epidemiology Biomarkers & Prevention 1614, 1615 (2012).

38 Our History, Patient Advoc. Found., https://www.patientadvocate.org/learn-about-us/our-history [https://perma.cc/TJB3-JCJS] (last visited Sept. 26, 2024).

39 About Us, Pulse Ctr. for Patient Safety Educ. & Advoc., https://www.pulsecenterforpatientsafety.org/aboutus [https://perma.cc/J62Q-RXHD] (last visited Sept. 25, 2024).

40 Frequently Asked Questions, Pulse Ctr. for Patient Safety Educ. & Advoc., https://www.pulsecenterforpatientsafety.org/faq [https://perma.cc/C6KU-ZS2C] (last visited Oct. 3, 2024).

41 See Comm. on the Quality of Health Care in Am., Inst. of Med., To Err Is Human: Building a Safer Health System (Linda T. Kohn et al. eds., 2000) [hereinafter Inst. of Med., To Err Is Human]; Debra Hardy Havens & Lizbet Boroughs, “To Err Is Human”: A Report from the Institute of Medicine, J. Pediatric Health Care, Mar./Apr. 2000, at 77, 77–80 (discussing 1999 publication of IOM report and immediate responses from Congress, president Clinton, and health organizations).

42 Inst. of Med., To Err Is Human, supra note 41, at 1.

43 About Us, The Leapfrog Grp., https://www.leapfroggroup.org/about [https://perma.cc/75VS-P82Z] (last visited Sept. 25, 2024); Inst. of Med., To Err Is Human, supra note 41, at 49; Lucian L. Leape & Donald M. Berwick, Five Years After To Err Is Human: What Have We Learned?, 293 JAMA 2384, 2385 (2005) (“The concept that bad systems, not bad people, lead to the majority of errors and injuries, which is a crucial scientific foundation for improvement of safety in all successful high-hazard industries, has become a mantra in health care.”)

44 The History of the Alliance of Professional Health Advocates, All. of Pro. Health Advocs. (Jan. 2022), https://aphadvocates.org/about-apha/history [https://perma.cc/H87M-LEE7]; Trisha’s Misdiagnosis Story, Trisha Torrey, https://trishatorrey.com/about/misdiagnosis/ [perma.cc/6EJ2-SPJ3] (last visited Oct. 24, 2024);

Find a Patient Advocate, Umbra Advoc. Directory, https://app.umbrahealthadvocacy.com/search [https://perma.cc/2XTS-S4YE] (last visited Sept. 25, 2024).

45 About NAHAC, Nat’l Ass’n of Healthcare Advoc., https://nahac.com/about-nahac [https://perma.cc/4HY9-B7JC] (last visited Sept. 25, 2024).

46 About Us, The Care Partner Project, https://thecarepartnerproject.org/about/#Family-Story [https://perma.cc/24M7-EXYU] (last visited Sept. 25, 2024).

47 Hospital Care Checklists, The Care Partner Project, https://thecarepartnerproject.org/hospital-stay-checklists [https://perma.cc/5538-5X38] (last visited Sept. 26, 2024).

48 Our Roots, HealthAdvocateX, https://www.healthadvocatex.org/our-roots [https://perma.cc/B9KB-N85G] (last visited Sept. 26, 2024).

49 Patient Advocates: L. Bradley Schwartz, Greater Nat’l Advocs., https://gnanow.org/advocates/bradley.html [https://perma.cc/7KZ8-S48R] (last visited Sept. 26, 2024).

50 Coal. of Health Care Advoc. Orgs., https://chcao.org [https://perma.cc/83PR-YZKN] (last visited Sept. 26, 2024).

51 See Patient Advoc. Certification Bd., supra note 27.

52 About Us, Patient Advoc. Certification Bd., https://www.pacboard.org/about [https://perma.cc/L373-A6P3] (last visited Sept. 25, 2024).

53 See Annas & Healey, supra note 1, at 264.

54 Ethical Standards: Code of Ethics for Board Certified Patient Advocate, Patient Advoc. Certification Bd., https://www.pacboard.org/ethical-standards/ [https://perma.cc/2X3G-L4ZR] (last visited Sept. 25, 2024).

55 Competencies and Best Practices, Patient Advoc. Certification Bd., https://www.pacboard.org/competencies/ [https://perma.cc/D5MX-QDV2] (last visited Sept. 25, 2024).

56 BCPA Certificant List, Patient Advoc. Certification Bd., https://www.pacboard.org/bcpa-certificant-list/ [https://perma.cc/MP2S-QVSG] (last visited Oct. 24, 2024).

57 Compare Nat’l Ass’n of Healthcare Advoc., Code of Ethics for Patient and Health Care Advocs. 3 (2022), https://chcao.org/wp-content/uploads/2022/06/20220607-COE-Published-compressed-1.pdf [https://perma.cc/X78R-W9G8], with Inst. of Med., To Err Is Human, supra note 41, at 197.

58 Nat’l Ass’n of Healthcare Advoc., supra note 57, at 7.

59 Annas & Healey, supra note 1, at 263.

60 Id. at 266.

61 See Bos. Univ. Sch. of Pub. Health, Annual Cathy Shine Lecture Featuring Heidi B. Kummer: The Case for Patient and Health Care Advocates, YouTube, at 16:18–16:33, 25:58–26:54 (Apr. 5, 2023), https://www.youtube.com/watch?v=Aa_Es85Gi84&t=2s [https://perma.cc/224J-UL7A].

62 See Linda Keslar, The Evolution of the Doctor-Patient Relationship, Med. Econ. J., Oct. 2023, at 84, 88–89.

63 See Lisa Amanti et al., Top Ten Issues in Health Law 2024, Am. Health L. Ass’n (Jan. 1, 2024), https://www.americanhealthlaw.org/content-library/connections-magazine/article/d91b2697-e96b-49e4-84c1-1b8399406f5e/top-ten-issues-in-health-law [https://perma.cc/FT8K-M2DF] (discussing “Health Care’s AI Transformation” in § 1).

64 See id. (discussing the state of reproductive health in 2024 in § 6).

65 See Ana Natale-Pereira et al., The Role of Patient Navigators in Eliminating Health Disparities, 117

Cancer 3543, 3549–51 (2011).

66 See Ann S. O’Malley et al., Policy Options to Encourage Patient-Physician Shared Decision Making 5 (Nat’l Inst. for Health Care Reform, Pol’y Analysis No. 5, 2011).

67 See Tanner J. Caverly & Rodney A. Hayward, Dealing with the Lack of Time for Detailed Shared Decision-Making in Primary Care: Everyday Shared Decision-Making, 35 J. Gen. Internal Med. 3045, 3045 (2020).

68 Lea Christo et al., Coal. of Health Care Advoc. Orgs., The Critical Role of Patient And Health Care Advocates: A Special Report 1, 8 (2023), https://chcao.org/special-report-2023/ [https://perma.cc/5KUL-CK7T].

69 Id. at 9.

70 Id. at 10.

71 Id. at 12.

72 Aziza Ahmed et al., Dobbs v. Jackson Women’s Health: Undermining Public Health, Facilitating Reproductive Coercion, 51 J.L. Med. & Ethics 485, 485, 487–88 (2023); Susan Frelich Appleton & Laura A. Rosenbury, Reflections on “Personal Responsibility” After COVID and Dobbs: Doubling Down on Privacy, 72 Wash. U. J.L. & Pol’y 129, 132 (2023).

73 Medicare Learning Network, Ctr. for Medicare & Medicaid Servs., MLN901705, MLN Fact Sheet: Telehealth Services 3 (2024), https://www.cms.gov/files/document/mln901705-telehealth-services.pdf [https://perma.cc/27BA-55SS].

74 See, e.g., Health Advocacy & Navigation, Health Advoc., https://www.healthadvocate.com/site/product-index/health-navigation [https://perma.cc/9BUN-32LD] (last visited Sept. 24, 2024).

75 Our Team, HealthPair, https://healthpair.org/our-team [https://perma.cc/ Z7QW-JMF9] (last visited Sept. 24, 2024); Avery Ruxer Franklin, ‘Knowledge Is Power’: Rice Students Create Startup to Help People Take Control of Their Health Care, Rice News (June 13, 2024), https://news.rice.edu/news/2024/knowledge-power-rice-students-create-startup-help-people-take-control-their-health-care; The Healthcare Navigator, https://www.thehealthcarenav.com/ [https://perma.cc/VK9S-BXAF] (last visited Sept. 24, 2024).

76 Impact of Implementing Personalized Advocacy, Accolade, https://www.accolade.com/resources/one-sheet-aon/ [https://perma.cc/94J2-A8L3] (last visited Sept. 25, 2024).

77 An Overview of the Profession of Health and Patient Advocacy, All. of Pro. Health Advocs., https://aphadvocates.org/profession-overview/ [https://perma.cc/G9KM-4YYM] (last visited Sept. 25, 2024); What Does It Cost to Hire a Patient Advocate?, Umbra Health Advoc., https://umbrahealthadvocacy.com/what-does-it-cost-to-hire-a-patient-advocate/ [https://perma.cc/87Q5-RY4J] (last visited Sept. 25, 2024).

78 Natalie Lawson, Momentum for Community Health Workers in Medicaid Continues in the New Year, Geo. Univ. McCourt Sch. of Pub. Pol’y Ctr. for Child. & Fams. (Jan. 29, 2024), https://ccf.georgetown.edu/2024/01/29/momentum-for-community-health-workers-in-medicaid-continues-in-the-new-year/ [https://perma.cc/B7HX-HDDZ].

79 CMS Creates New Codes to Reimburse for Navigation Services, Avalere (Mar. 11, 2024), https://avalere.com/insights/cms-creates-new-codes-to-reimburse-for-navigation-services [https://perma.cc/7PDM-PQT5]. Health Equity Services in the 2024 Physician Fee Schedule Final Rule, Ctrs. for Medicare & Medicaid Servs., https://www.cms.gov/files/document/mln9201074-health-equity-services-2024-physician-fee-schedule-final-rule.pdf-0.

80 Infinity Bus. Insights, Global Patient Advocacy Solutions Market – Industry Status and Prospects Professional Market Research Report 2024-2032 (2024).

81 Emily Krutsch & Javier Colato, World Health Day: Celebrating Good Health and In-Demand Healthcare Jobs, U.S. Dep’t of Lab. Blog (Apr. 5, 2023), https://blog.dol.gov/2023/04/05/world-health-day-celebrating-good-health-and-in-demand-healthcare-jobs [perma.cc/52ND-HZSB].

82 See Emp. & Training Admin., U.S. Dept. of Lab., Patient Representatives — 29-2099.08, O*NET Online, https://www.onetonline.org/link/summary/29-2099.08 [https://perma.cc/9VT8-VJWZ] (last visited Sept. 25, 2024).