How do you describe what a Patient Leader and Advocacy is to someone who asks that is unfamiliar?

This could be a good topic to discuss in-depth or in an extension of a course that already exists.

Share in the comments your thoughts and advice for those looking for an easy way to explain to someone who is unfamiliar with the work we do.

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This is a great one.

To me, a Patient Leader is someone leading the charge for patients. I always explain it to people saying that there are patients and caregivers using their own experiences to connect and empower others. I give examples of people like - oh you know patients who run facebook groups or blogs or go to runs/walks, etc. Then they start to put two and two together.

It’s funny, sometimes people think I work in a hospital or a healthcare setting! Honestly, I still don’t think my husband fully understands what we all do…

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When I describe a patient leader / advocate to those who are really unfamiliar I will try to explain it as part of my story. People may already know I am a cancer survivor so I will use that as a starting point. "As you know over the past 14 years I have learned a lot about ovarian cancer , risks, treatment, surviving with side effects. As a patient leader and advocate I share my experience and knowledge with others. Sometimes the others are newly diagnosed women, sometimes they are physicians who treat patients and sometimes they are researchers developing clinical trials to test new drugs or therapies. " Then I would go on and tell them some ways that I am a patient leader - blogging, gyn cancer community leader on Twitter, co-author, ASCO volunteer and patient advocate on my cancer center’s Scientific Review Board. I might have to explain that ASCO is a society of clinical oncologists, health care partners ( nurses, social workers) and patient advocates. Then I will tell them I often get e-mail addressed to Dr Sparacio but I am not a doctor just a patient expert.

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To me, being a patient leader an advocate is synonymous with being a voice for those who have yet to find their voice. I believe each patient suffering from a disease has the ability to advocate and lead in their disease population but may need the encouragement and the empowerment of knowledge about their disease.

As a patient leader, I spend a lot of time educating patients about their disease and giving them the resources that they need to Obtain top medical care.

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Agreed patient leaders carries the ability to break the stigma attached to any condition because they become the voice for those unable to speak out for whatever reason

Hello all! I’m Kashinda and very new here to the site. As I become familiar with the role of a Patient Leader, it seems to follow a similar model to that of a Peer Support Specialist. As a Peer Support Specialist, we too use our own lived experiences, typically in the areas of mental health and/or substance abuse, to help others on their recovery journey to wellness. As a Patient Leader, I would frame the explanation very close to that. A longer-termed chronic condition-specific patient helping to advocate for another patient living with that same condition.
I’m here to learn as well.

Does that seem about right?