Partnership-with-patients-summit

Does anybody remember doing a pen pal program in elementary school? You were assigned another student from a different school, and then you started writing short letters back and forth. I remember enjoying those opportunities to get to know people who lived far away. That, arguably, was my first experience with social networking.

As far as I can tell, very few people spend time writing letters anymore. The pen pal has become the online friend, someone that you keep up with through the Internet. But to me, the real beauty of social media is similar to the things I enjoyed about the pen pal program: the chance to connect with people that you may never have had the chance to meet in person. The main difference is that you connect with people on social media as a result of a common interest, passion, or experience. Twitter, Google+, and Pinterest are great examples of this—through open profiles and the use of hashtags, it’s relatively easy to find a community that cares about the same things you do.

Last month, I had the chance to see one of these online communities come together in person for one of the most powerful events I’ve ever attended. The Partnership with Patients summit was organized by Regina Holliday, the widow of one of my college professors who died of kidney cancer in June 2009. Since her husband’s illness, Regina has become a leading figure in the e-patient community that has an online home of sorts on Twitter. And last month, she organized a conference at the Cerner campus in Kansas City, Missouri, that brought many of them together to discuss their ideas, experiences, and insights on how patients can become more active participants in improving the health care system.  Some of these people—like Casey Quinlan and Alicia Staley, the two women in the photo below—had been friends online for years and years, and were just meeting in person for the first time.

@MightyCasey meets @stales in person.

 

 

 

 

 

 

 

 

 

I attended the conference as a patient and a social media enthusiast, and came away with both passions brimming with new ideas. We discussed the need for the health care system to change its approach to topics like mental health, end-of-life care, and patient safety (among many others) in wide-ranging discussions that encompassed a variety of opinions that reflected the views and differing experiences of the patients and providers in attendance.

Technology featured prominently in the all of the discussions throughout the weekend, both as an active and a passive participant. Many elements under discussion—error prevention, fact checking, medical records, and more— relate to the introduction of computerized records systems and even medical processes, which has been taking place over the past several years. The introduction of electronic medical records has led to debates over privacy and security, as well as transparency and openness.

In addition to the discussions about different kinds of electronic medical records, patient access to data, and other related topics, technology allowed other guests to be present in the rooms during the conference. During the Saturday sessions, there were approximately 70 people tweeting on the hashtag “#cinderblocks” from the conference itself. However, there were a total of 201 people who tweeted about #cinderblocks throughout the day… which lead to over 2,000 total tweets… which lead to over seven million impressions of the tweets. Nobody had to “sneak” their use of social media under the table at this event—everybody who wanted to be tweeting from their phone, tablet, or laptop, felt free to do so at any time.

It was inspiring for me to be in the presence of people who so profoundly believed in the possibilities that technology holds to improve health care, and who used it so well in their own lives. I met patients who do not want to be passive participants in their own health, but who want to partner effectively with their medical providers to yield the best results possible, and they believed that information—their own medical information, in particular—is the first step to making that happen. Sites like Twitter have encouraged and expedited this kind of relationship-building, and the Partnership with Patients summit was a great reminder of what social media can be at its best.

Carolyn
Every day I get to think about technology and how it can make our world a better place. I love to relate pop culture to social media and help you understand how being social online can benefit you. Love books, music, classic movies, and connecting with cool people on social media!

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