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LEARNING OBJECTIVES:
At the end of the learning unit, the trainee should be able to:
a) Define patient advocacy.
b) Recognize patient advocacy as a core value governing medical practice.
c) Describe the role of patient advocates in the care of the patients.
d) Develop a positive attitude towards patient advocacy.
e) Be a patient advocate in conflicting situations.
f) 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.
• 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 individuals, families, communities, and populations”. 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.