Patient Advocates

I received a "tweet" that said I was listed on Listly's list of 300+ patient advocates.

http://list.ly/list/4V0-300-plus-patient-advocates-on-twitter#item_970146?

I'm not really familiar with this list but I'm going to check it out.  I'm #316!  You can follow me on Twitter through the link on that site.  I'll try and add a "twitter" button on my blog too.  I don't tweet much--I'm hardly online anymore after working hours.  I spend most of my day on a computer and the last thing I really want to do at night it spend more time on it!  Of course with smart phones and iPads it not easy to get away from our online "life".

So what is a patient advocate?

Patient advocacy is an area of lay specialization in health care concerned with advocacy for patients, survivors and carers. Typical advocacy activities are: patient rights, matters of privacy, confidentiality or informed consent, patient representation, awareness building, and support and education of patients, survivors and their carers. Patient advocates give a voice to patients, survivors and their carers on health-care related (public) fora, informing the public, the political and regulatory world, health-care providers (hospitals, insurers, pharmaceutical companies etc.), organisations of health-care professionals, the educational world and last but not least the medical and pharmaceutical research communities.

Patient advocacy in its current form finds its origins in the early days of cancer research and treatment, in the 1950s. It's part of the notion of Total Care, a term coined by Sidney Farber, a Harvard physician and cancer researcher, referring to the treatment of children suffering from leukemia where "the cancer clinician treated the family as a whole".[1] The concept of Total Care subordinated clinical investigation to patient welfare ... "clinical investigation in the field of cancer may be carried out only as part of the total care of the patient" (Farber et al.,1956).[2] Cancer patients are usually not in a position to take an assertive stance, and even less so in the 50s; clinicians recruited patients for tests and suspicion reigned at the NIH as researchers had to convince doctors and patients they weren't experimenting on people. In order to properly represent the patients in this medico-legal and ethical discussion patient advocacy came into being as a way to make the voice of the patient heard.[3] http://en.wikipedia.org/wiki/Patient_advocacy

I'm not sure I consider myself a "patient advocate".  I started my blog to keep my friends and family informed on my medical issues and treatment.  Of course, I think most personal cancer blogs start out that way.  I do want to share what I learn along the way and help others.  I'd like to do more but with working full-time, I just don't have the "time" or energy to keep up with everything.

To me, a Patient Advocate is someone who "stands for the patient". Helps them navigate this world we call "cancer".  Lends moral support, medical information and shares treatment experiences.

What is a Patient Advocate to you?