Last week was a great reminder of the power of the consumer – namely, You. Forbes published an article about Angelina Jolie with which many of us in the hereditary cancer community took issue. Some felt the tone was a bit snarky and that the medical and scientific facts were not accurate. Those of us committed to accurate education in cancer genetics were disappointed and felt that a major opportunity had been lost.
But then something interesting happened … some advocates posted comments on the Forbes site (one of my favorites was by, Amy Byer Shainman, on Twitter @BRCAResponder). They tweeted, they commented on Facebook. And a remarkable and exciting thing happened --- the author responded and edited his article. Yes, advocates convinced a Forbes author to change his article. And this is a small reminder of the larger power of the consumer community. Together, with the help of social media and each other, we can be the source of change. Not just little changes, but big changes: for example, whether human genes can be patented or an insurance company covers genetic testing. We can educate clinicians and consumers about who needs genetic testing and underlining the necessity of genetic counseling by a certified provider.
Many of you have tackled these issues and you are making a huge difference, one step a time. Are you ready to take on a bigger challenge? How can you impact change as a community?
- Unleash the power of social media. Join. Learn how to use it (yes, you can.)
- Join groups of like-minded individuals, locally and globally.
- Identify issues of importance to you.
- Come up with a plan. Write to people of interest, tag them on FB or Twitter. Get others to join you.
- Involve the media to get your story out there. Request a response.
- Don’t give up. Stay on it. And do not underestimate your power, especially as a community.
Photo by Insomnia Cured Here, via Flickr