As a patient advocate, I believe it is important to understand the evolution and history of the role as well as honor the past and the work of others.
It was only a matter of time before the current healthcare system created the vacuum that needed to be filled by patient advocates. As with any advocacy movement, it is the need to support people in finding resolutions to issues that concern them. It is the need to redress an inequality or injustice in a system.
One of the principles of advocacy is that every person should be valued, ensuring that people are not ignored. In healthcare advocacy, it is the need to be respected and listened to, and be involved in the decision making that will affect lives. It is this basic principle that has been neglected in our healthcare system.
There is a strong history of health advocacy in the USA. The roots can be found as far back as 1893 with Lillian Wald and her nurses who advocated and provided care for immigrants on the Lower East Side of New York. The Visiting Nurse Service was established from her work.
There were organizations like the American Society for Control of Cancer (now American Cancer Society) 1913, and the National Foundation for Infantile Paralysis (now the March of Dimes) advocating for services, research, care and understanding. In 1910, Margaret Sanger while working with immigrant women and experiencing their suffering in childbirth, began advocating for a woman’s right to family planning. Many of the faces of health advocacy were professional people , doctors, nurses, lawyers and social workers.
The current field of patient advocacy has its roots in the patient rights movement of the 1970’s. The National Welfare Rights Organization was instrumental in getting a patient bill of rights accepted by JACHO in 1972. This document is the foundation for patient rights and advocacy today.
Hospital based advocates have been around since the 70’s with the need to monitor patient safety and care. One of the first professional associations was formed by hospital advocates called “The Society for Healthcare Consumer Advocacy.” Their debates about credentials and education were instrumental in Sarah Lawrence College starting a masters program in health advocacy in 1980.
In the 1980’s and early 90’s,the healthcare system saw the growth of the insurance industry sectors, the specialization of care and primary care provider as the gatekeeper. Each area had its own system and rules making it difficult to navigate and understand. The complexity was overwhelming to many when trying to access any aspect of healthcare. The system design lacked input from the most valuable asset, the patient. Consequently, patients turned outside the system for answers and solutions to problems and the role of the individual patient advocate was born.
The growing profession of the individual patient advocate continues to evolve as a voice to read the sign posts, translate systems, link to services, support decision making and analyze information. The healthcare system may shake their heads at this new profession and question the necessity but it provides a necessary service and fills the vacuum.