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Presentation at the first workshop of Research Ethics Program - Clinical Ethics: Principle and Methods held at Princess Nourah bint Abdulrahman University, Riyadh on 30 October 2019. By: Professor Omar Hasan Kasule Sr. MB ChB (MUK). MPH (Harvard), DrPH (Harvard) Chairman of the Ethics Committee King Fahad Medical City.
Learning
Objectives:
- 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 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 pharmacies.
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]
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.
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.
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
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 representatives.
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]
9.
Horm Metab Res. 2015 May;47(5):344-50.
10.
Bladder Cancer. 2015 Oct 26;1(2):117-122.
11.
Cancer Immunol Res. 2013 Dec;1(6):357-61..
12.
BMC Gastroenterol. 2016 Aug 31;16:107.
13.
Am J Kidney Dis. 2016 Aug 20.
Process-Focused Advocacy:
} Perioperative
nurse advocacy.[14]
} Obstetric
advocacy.[15]
} Surgical patient
advocacy.[16,17]
} Biobank advocacy groups. [18]
14.
J Perianesth Nurs. 2016 Oct;31(5):422-33.
15.
Nurs Sci Q. 2016 Oct;29(4):316-27.
16.
Obstet Gynecol. 2016 Apr;127(4):758-62.
17.
J Visc Surg. 2012 Jun;149(3):e165-71.
18.
Biopreserv Biobank. 2014 Oct;12(5):294-9.