Monthly Archives: August 2015

Patient Advocacy

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Be a Patient Advocate

Erin MacBean

I stepped into the world of patient advocacy ten years ago when I joined my first online support group for Pheochromocytoma and Paraganglioma. Prior to joining, I had gone through two surgeries and six years without talking to, meeting, or hearing of any other patients like me. The welcome I received online was a lifeline for me – suddenly I wasn’t a college freshman navigating a rare illness alone anymore. I soon made it a goal to link others to support groups and organizations so that they would not have to face a rare illness alone like I had, and here I am today.

Over the years many have asked me:

  • What do patient advocates do?
  • Have patient advocates made a difference?
  • How does one become a patient advocate?

At the base of patient advocacy is a great desire to help. Advocacy works on multiple levels. It can be entire organizations or individuals, volunteers or paid employees. They can focus on one section of advocacy like: patient rights, medical reform, research, outreach and education, medical navigation, mentors, or they can work on them all at one time. It all depends on the patient’s needs and the level of knowledge and experience the advocate has.

Patient advocates have made huge differences all around the world. Through advocacy, patients have gained access to doctors they normally wouldn’t have seen. Patient voices have been heard to create better job protection or reimbursements, as well gaining government funding for research centers to find cures. Patients are now able to connect to experts from around the world and access to the latest research findings. Last, but not least, is the moral support and understanding though the formation of social communities.

There is no accredited certification or licensing to become a patient advocate in the U.S. thus far. However, there are organizations and a few colleges that offer coursework specific to patient advocacy such as workshops, online webinars, or other certificate programs. This means patient advocates need to have the drive to educate themselves in many aspects of health care and legislation. A good patient advocate develops a number of skills over time. Some of those skills are:

  • Communication skills
  • Time managements and organizational skills
  • Ability to research and ask questions
  • Persistence
  • Patience
  • Creativity
  • Empathy

I know the list looks intimidating, but following the desire to help others rewards you with these skills over time. The easiest way to start is to research organizations that have mission statements that appeal to you and volunteer for them. You can also join support groups and listen to what the patients ask or need and then try to find ways to help. Attend conferences, seminars, or events and network with others that have similar interests. Finally, seek out other advocates. Many advocates know, and are happy to share, resources or tools that may help you build skills and raise your confidence.

Being a patient advocate has been one of the most rewarding and life changing decisions I’ve ever made. Advocates have made great strides in reforming healthcare around the world. There is still work to be done though and we need all the help we can get. If anyone wants to learn more about advocacy, or would like to be one, feel free to contact me anytime paratroopererin@gmail.com