The model of a patient advocate: what are the key elements of success?

I deal with many patient advocates and that is one of my favorite parts of my job. They are wonderful! However some go above and beyond the call of duty and are model advocates in my opinion. Others do some great things, but also some negative things such as attacking the FDA publicly, which serves no practical purpose.

Roman Reed won my blog’s Stem Cell Person of the Year Award for many reasons, some of which I outlined this week, but a big one is that he is the complete package of a patient advocate. How so?

Knoepfler and Roman ReedThere is a reason Roman is a mentor and role model to so many other patient advocates, who can learn from Roman’s example in some key areas:

  • He does his homework and knows the science (see us talking about some unpublished preclinical data from my lab above).
  • He focuses on the positive rather than the negative.
  • He makes real, tangible things happen such as laws.
  • He knows the importance of funding as the fuel for making stem cell medicine a reality.
  • He is a uniter and not a divider, building bridges between all kinds of folks who might normally be separated: scientists, advocates, politicians, lawyers, patients, funding agency folks, etc.
  • He empowers others.

I consider myself sort of a junior patient advocate being relatively new in the area just for a few years and I find myself learning from Roman all the time.

2 thoughts on “The model of a patient advocate: what are the key elements of success?”

  1. As Tracy and I are fairly new to being stem cell patient advocates, negativity and name calling are not a part of our repertoire. Bridging gaps as you say is a must, using positive dialogue, good listening skills, and open-mindedness. We are definitely in the information gathering stage to better understand what has happened to us with CellTex. We have a barrage of individuals sharing information with us, and it takes time and effort to sort through all of it, and make a mature decision as to what applies to us directly. I’m sure you agree, that Tracy and I find ourselves in a unique situation, by no fault of our own. Your example of Roman Reed, as a perfect patient advocate, is a good one. Please grant Tracy I the opportunity to migrate through the stem cell learning curve, as we are totally on the same page. Change must happen from within. Anything else would just be a spinning wheel. We very much hope to follow in the awesome footsteps of Mr. Roman Reed. Another point I’d like to draw attention to is this crazy thing we call social media. Twitter for example can be such a wonderful tool for patient advocates. The only problem I have with it (mind you I was born in 1965) is that one can say things they would never have the courage to say to someones face. It seems a bit cowardly to attack someone on a social media site. In short, social media lacks the “intimacy” that a face to face conversation would have. Now, on the other hand, it allows communication that 10 years ago would never be happening. Getting to communicate directly to a source of information like yourself, has been enlightening! So I guess the key to all this is balance and respect. Thank you Paul!

    1. Thanks for the comment, Jennifer. I commend you and Tracy working to make a positive difference.
      It is definitely a learning process and there are almost many gray areas where I believe good people can disagree.
      In terms of social media, it is a double-edged sword. As the only stem cell professor in the world blogging and as a supporter of all kinds of stem cell research, I have been attacked verbally countless times on many different issues. I’ve developed a fairly thick skin, but it is still not pleasant to put it mildly. Might I ask who you feel has attacked you? You can comment here or you can certainly reply by email if you feel more comfortable doing that in terms of this question. I have found over the years that one’s response (or choice not to respond) to attacks should vary depending on who the attacker is. Some people out there are truly unbalanced and disrespectful showing zero signs of changing. Keep up the good work!

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