181008 - PATIENT ADVOCACY

Presentation at a “Residents’ Ethics Training Program” held in Madinah al Munawwarah on November 8, 2018 by Professor Dr. Omar Hasan Kasule Sr. MB ChB (MUK). MPH (Harvard), DrPH (Harvard) Chairman of the Ethics Committee King Fahad Medical City

 

Learning objectives:

At the end of the learning unit, the trainee should be able to:

• Define patient advocacy.
• Recognize patient advocacy as a core value governing medical practice.
• Describe the role of patient advocates in the care of the patients.
• Develop a positive attitude towards patient advocacy.
• Be a patient advocate in conflicting situations.
• Be familiar with local and national patient advocacy groups.

Definition of patient advocacy:

• Patient advocacy is representing and defending the interests of the patient.
• A patient advocate may be an individual or an organization.
• The advocate may be from within or from without the organization.

Scope of patient advocacy:

• Patient rights: autonomy, privacy, confidentiality.
• Patient support.
• Patient education / awareness.
• Representing patient interest to the public, authorities, and organizations e.g. hospitals and pharmacy.

Roles of patient advocacy:

• Patient support.
• Patient education.^[1]
• Communication with caregivers.
• Policy changes.
• Shaping the research agenda and access to experimental treatments.^[2,3,4]

Advocacy by the healthcare provider:

• Physician advocate role: As Health Advocates, physicians’ responsibly use their expertise and influence to advance the health and well-being of individual patients, communities and populations.
• Nursing advocacy role included in the nursing role by the American Nurses Association as "… advocacy in the care of individuals, families, communities, and populations”. Nursing advocacy has evolved to become a central feature of the nursing profession.^[5] Nursing advocacy involves empathy.^[6]
• Clinical ethics consultants play an advocacy role.^[7]
• Social workers are advocates for patients.

Conflicts of interest in patient advocacy by healthcare givers:

• Patient advocate vs healthcare giver.
• Patient advocate vs employee of the hospital.

National and international advocacy groups:

• The National Patient Advocate Foundation.
• The Alliance of Professional Health Advocates.

Government patient advocacy groups:

• Office of advocacy services in New York and California.
• Patient complaints offices / patient affairs / patient representative.

Disease focused advocacy groups:

• Advocacy for patients with disorders of sex development.^[8]
• Bladder cancer advocacy.^[9]
• Melanoma research advocacy group.^[10]
• Advocacy for gastroparesis.^[11]
• Chronic kidney disease advocacy.^[12]

Process focused advocacy:

• Perioperative nurse advocacy.^[13]
• Obstetric advocacy.^[14]
• Surgical patient advocacy.^[15,16]
• Biobank advocacy groups. ^[17]

References:

1. J Cancer Educ. 2016 Jun;31(2):375-81.
2. Orphanet J Rare Dis. 2016 May 18;11(1):66.
3. BMC Med. 2016 Feb 29;14:39. doi: 10.1186/s12916-016-0586-6.
4. BMC Med. 2016 Feb 2;14:17. doi: 10.1186/s12916-016-0568-8.
5. Contemp Nurse. 2016 Sep 27:1-14
6. J Med Ethics Hist Med. 2016 Jun 11;9:5
7. J Clin Ethics. 2016 Summer;27(2):176-84
8. Horm Metab Res. 2015 May;47(5):344-50.
9. Bladder Cancer. 2015 Oct 26;1(2):117-122.
10. Cancer Immunol Res. 2013 Dec;1(6):357-61..
11. BMC Gastroenterol. 2016 Aug 31;16:107.
12. Am J Kidney Dis. 2016 Aug 20.
13. J Perianesth Nurs. 2016 Oct;31(5):422-33.
14. Nurs Sci Q. 2016 Oct;29(4):316-27.
15. Obstet Gynecol. 2016 Apr;127(4):758-62.
16. J Visc Surg. 2012 Jun;149(3):e165-71.
17. Biopreserv Biobank. 2014 Oct;12(5):294-9.