Added by on 2013-06-06

Live Tweets From My Presentation "Social Media & Patient Advocacy"

Live Tweets From My Presentation “Social Media & Patient Advocacy”

How important is social media to you? How often do you use it in your PKU lifestyle? I posed these questions on my Facebook Page a few weeks ago. Well, earlier this week I spoke about Social Media and Patient Advocacy at the 2013 APHL Annual Meeting & Seventh Government Environmental Laboratory Conference in Raleigh, NC. It was a great experience, both personally and professionally rewarding, and allowed me the unique opportunity to share my thoughts about social media with representatives from public health labs from across the country.

Producing my film, “My PKU Life”, was my introduction to PKU and newborn screening advocacy. As of today the film has received over 20,000 views, and it keeps growing. That’s more than I could have ever imagined. Not long after I released the film I was contacted by PerkinElmer, one of the leading private entities in the newborn screening field. That experience really was a catalyst, as I realized how much I had taken newborn screening for granted.

These days I spend much of my energy on newborn screening advocacy, and not just PKU. Why? Well, we all have diverse experiences with PKU. And since I was isolated from the community for the first 30 years of my life, I’m still learning things about the challenges we face in our community. Since I live in Louisiana, where formula is provided by the state, I can’t comprehend how difficult it is for those in states where there is little or no support. And I can’t imagine what it’s like for those who live in countries around the world where PKU is just being discovered and treated.

So I’ve chosen to spend a lot of my time advocating for newborn screening. As important as it is to raise awareness about PKU, and hopefully make some serious changes in the way people get access to treatment, it is also important to tell others about newborn screening. The person you meet on the street and start chatting with about PKU may never experience PKU in their family. But every child, whether affected by PKU or not, is affected by newborn screening. The time to educate people is before they have their child, at least during the prenatal period… Not after their child has been born. As one newborn screening official told me, “The first time people hear about newborn screening shouldn’t be when there’s an abnormal result.”

So, most of my advocacy with the larger population is about newborn screening. How have I used social media in that regard? Well, there are a few thoughts I shared this week that I’d like to share with you as well.

I use social media as an extension of broadcast journalism. Since my background is in television news, I decided to tap into that experience in my advocacy through social media. A reporter I used to work with, while lamenting the decline of journalism, once said, “It used to be called journalism. Then it became information. Now it’s content. It doesn’t matter what it is so long as it hits the air.” That skepticism does reflect the decline in the quality of journalism, but it doesn’t have to be true of social media.

They say content is king. But I think it should be rephrased: Valuable content is king. Giving people a lot of content to consume. Photos and videos tend to work well for me, but surprisingly so do long posts. What matters the most is authenticity. I think advocates on social media have a journalistic responsibility to share accurate information, especially given the wildly inaccurate content we are all exposed to.

I use social media as a relationship-building tool. Broadcast journalism is all about mass communication, but social media empowers individual connections. So, I answer every message and respond to every comment. I don’t really find it time consuming. To me, that’s like saying it takes too long to talk to someone… That you don’t have enough time to have conversations. Social media is all about people.

I use social media as a community-building tool. Every day I communicate with people from all across the world. Whether they are affected by PKU, or perhaps part of the larger newborn screening community, social media has allowed me to build a diverse audience. On my page I regularly interact with parents of children with PKU, some teenagers, and adults living with PKU. Again, there is so much diversity in our community that I try to post general topics that everyone can relate to. I stay away from any medical advice (if you ever ask me for such advice I’m going to have a simple reply: ask your metabolic team!), and I don’t post much about the diet or share recipes. There are others on social media who are much better at that than I am. I focus on the social aspects of living with PKU, and encourage advocacy for either PKU or newborn screening. So far, I’ve built my Facebook page to about 650 followers. That potential reach extends farther when you include their friends. That’s why shareable content is ideal. One quick example… I posted the trailer to my latest film, “For Katy”, on my Facebook page and within two days the post had been seen by 2,000 people.

You may not be operating a page like I am, but if you are reading this you are likely on social media. You don’t have to have a set strategy in your personal posts. But think about these points…

  • Always share reliable and accurate information.
  • Make individual relationships with people. With social media, it doesn’t matter where they live.
  • Engage in a community. Even while managing your own condition, try to do something to give back to others.

My philosophy for my website evolved from my experience on social media. I hope in our interactions, and in your interactions with others, you are able to…

Inspire. Empower. Unite.



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