Patient Advocacy in Healthcare: Private industry or physician’s domain?

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Back in 2009, the New York Times published an article, “After Diagnosis, Someone to Help Point the Way,” (http://www.nytimes.com/2009/09/12/health/12patient.html) about patient advocacy and the increasing need for individuals to help guide patients through the complexities of the US healthcare system. The piece generated an online discussion (http://well.blogs.nytimes.com/2009/09/11/hiring-a-patient-advocate/) with over 50 responses, ranging from enthusiastic endorsement, to unease, to flat-out contempt for the current state of healthcare.

Four years (and the PPACA) later, the demand for assistance navigating complex diagnoses, treatment plans, and insurance difficulties still exists, and the interest in patient advocacy has increased.

How does the apparent need for additional assistance while receiving care affect patients and physicians today?

First, it might make sense to try and define patient advocacy. Some suggest it’s the obligation to develop patients’ autonomy, while other definitions focus on patient rights, values, and interests. Some advocates emphasize social justice in the delivery of health care. Regardless of the definition, when people feel powerless because of illness, disability, cultural differences, or just sheer confusion, it can be advantageous for someone else to advocate on their behalf.

Patient advocates speak of their ability—and, perhaps more importantly, time—to investigate treatment options, research specialists, and to demand services.  They decode jargon, educate the patient, look for alternative therapies, and help manage insurance coverage issues.  They keep their clients  (and their clients’ families) informed, and act as an ally in frightening, unclear times.

But are they doing anything a physician can’t? Or is it possible that doctors have been de-incentivized to spend time explaining illness and options for care with patients? Are doctors just spread too thin these days?

What kind of inherent dangers are there in patients putting their trust in advocates who don’t have medical training and experience treating illness?

Additionally, what kind of disparity is being created by a for-profit model in which the average cost of consulting with a private patient advocate is $150/$200 an hour?  What becomes of those who can’t afford someone to lead them through the intricacies of our healthcare system? There are other alternatives: online peer support groups, persistent and strong-willed family members and friends, and non-for-profit consults, but can they provide the same level of support?

Should we expect physicians to advocate for us?

Boston University’s School of Medicine proposes that to provide effective treatment and promote patient health, physicians must become advocates, and now offers an Advocacy Training Program (http://www.bu.edu/today/2013/training-med-students-to-become-patient-advocates/). The program focuses on determinants of health and interdisciplinary learning taught by physicians and lawyers engaged in advocacy.

From “BU Today”:

The ATP trains medical students to advocate for the health and

well-being of patients and their communities. “At the end of medical

school we want our students to be able to understand the social deter-

minants of health at a theoretical level,” says program alumni director

Lauren Fiechtner (MED ’09), a recent graduate of the Boston Medical

Center – Boston Children’s Hospital Boston Combined Residency

Program in Pediatrics. “They also will be able to screen patients

for social risk factors affecting their current and future health, intervene

directly to address the social issues disrupting a patient’s

health at the individual or community levels, and leverage resources

to effect broader change by addressing these social issues at the

community, state, national, or international levels.

ATP students have developed a pilot program to form a team of medical, legal, educational, and business students to advocate with social services agencies, and have developed a tool kit that doctors can use to help patients get food benefits.

Is BU School of Medicine’s ATP an indicator that patient advocacy will become a more significant topic in medical schools, or will the private patient advocacy business continue to grow? And how does the general decline of primary providers factor into the need for advocacy?

Share your thoughts below!

Additional information:

Patient Advocate Foundation: http://www.patientadvocate.org/

National Patient Advocate Foundation: http://www.npaf.org/

Guardian Nurses: http://www.guardiannurses.com/

 

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Aubrie-Ann Jones is a student in the Master’s Program in Narrative Medicine at Columbia University. She holds an MFA in Fiction from The New School, and a BA in Anthropology from Fordham University. Aubrie is hoping to promote Narrative Medicine training in both medical schools and in the clinical environment after graduation, and to continue to explore the patient/clinician relationship, particularly in trauma care. She is a writer, traveler, advocate, teacher, and runner who is currently heading up Operations and Leadership & Development at a boutique executive search firm that builds teams for NYC-based tech startups. Twitter: @aaj1026