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Patient Advocacy

By Terri Ottosen, Consumer Health Coordinator, NN/LM, SE/A Region

One of the most exciting areas of consumer health is emerging as a lay specialization in health care. This area covers patient education and navigation through the health care system and patient advocacy. There are many types of patient advocates and many routes to becoming an advocate. The education, skills and experience required are very similar to health sciences librarians. Right now, there is no formal certification recognized for patient advocates, but there are educational programs including certificate programs and continuing education. An individual patient advocate usually acts as a liaison between a patient and their health care provider. This role is frequently assumed by nurses and social workers, but increasingly, advocates are people that have had a health care experience that now leads them to the career of patient advocate. Some have become advocates for family members or even themselves after experiencing a life-threatening or serious illness. Their frustration and difficulties encountered with the field of medicine lead to their interest in helping others overcome barriers in obtaining health care.

Two individuals come to mind who have attained national recognition for their work in patient advocacy: E-Patient Dave and Regina Holliday. Both spoke at the MLA E-Patient Symposium in Washington, DC in 2010. E-Patient Dave, also known as Dave deBronkart, was diagnosed in 2007 with Stage IV renal cell carcinoma and his median survival time at diagnosis was just 24 weeks. Prior to his illness, he was already a speaker and writer, but after he beat his disease, he actively began to advocate for patients to be engaged in their health care, empowering patients to be an active member of their health care team. Today he is an accomplished speaker and activist. You can learn more about him and find links to his blog entries for e-patients.net at his website: http://epatientdave.com.

Regina Holliday regularly and passionately advocates the importance of open data access for patients and access to medical records. She came to her role after her husband’s illness and death, in which it was a struggle to get appropriate care during “11 weeks of continuous hospitalization at 5 facilities.” (http://reginaholliday.blogspot.com/) She is an artist, speaker and author and speaks powerfully about her experience trying to obtain access to her husband’s medical records. As her blog mentions, “her work is a visual reminder of the patient in the center of any policy debate and technical application.” You can find much more information about her and see her artwork at her blog.

As someone passionate about consumer health and interested in patient empowerment, I have been attending classes online in the patient advocacy certificate program through the University of Miami. I am learning a lot and am struck by the similarities and parallels between patient advocate work and our work as health information professionals. We are all patient advocates in some ways. We work with consumers, librarians, and health professionals in an effort to connect people with the information they need, whether it is for direct patient care or to help empower people to be active, engaged participants in their own health care.

As I head into the home stretch of the program, I am looking for ways to incorporate what I have learned into future classes and presentations. I am also eager to see what new and exciting ways consumer health and the patient advocacy movement will continue to evolve as we enter the most patient-centric time in health care in history. To read more about the movement, here are several organizations and links:

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

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

AdvoConnection Blog: http://advoconnectionblog.com

For more information, please contact Terri Ottosen at tottosen@hshsl.umaryland.edu.

 

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