Serendipity and great conversations.
I have sat on this particular blog post for a couple of reasons. First I did not want to loose the content among the long list of conversations about Podcamp and Thanksgivings . Secondly I was not sure how I wanted to write and share it.
This blog post has a beginning which starts at an ending. Podcamp Boston was over and I was catching my flight home to Heathrow. As I was checking my luggage I was invited to upgrade my seating. Since this rarely occurs to me I accepted the generous offer and began to wonder why life was creating this opportunity. Serendipity was at work since my fellow passenger was to engage me in a conversation which would educate me and give some real perspective to the overall value of my trip.
Karen Albritton MD is an Instructor in Paediatrics at Harvard Medical School, she works with the Dana Farber Cancer Institute helping to develop the Young Adult Oncology program. Of particular interest to her was how Young Adults are using Social Networks and Social media to create and develop support and advice groups between themselves.
Young Adults diagnosed with cancer are caught between worlds since they are not Children nor Senior Adults and the level of information and medical advice available to them can be disorientating if not inappropriate. Young Adult cancer patients can feel disconnected, with no place to share experiences and needs. They have been reaching out though the Internet to connect within their own communities.
The Dana-Farber Cancer Institute has been using a Wiki ( it was originally suggested by another young patient ) as a tool to discover how Young Adults are using technology to share and identify communities and advice. Despite the possible fears of the hurdles of “information control” and “administration” the benefits that the Wiki and other sites have provided has outweighed its detractors.
These on-line communities are creating spaces for Young Adult Cancer patients to meet on-line and build content and share experiences. It’s enabling a community that might be separated by distance and health to connect in an asynchronous fashion and create a sense of belonging, understanding and of being heard.
As I had just spent a few days talking and sharing social media and podcasting ideas the opportunity to share and “brain dump” the ideas and concepts from the show was perfect. Karen and I talked about the various social media sites and environments which had informed my podcamp experience.
One concept we discussed was the potential to use environments such as Second Life to provide a means of creating orientation and education for patients. Recreating clinics and medical devices in Second Life along with scripted conversations and introductions to Second Life visitors would provide an excellent education tool to reduce fear and increase awareness. Imagine if before arriving at the clinic you were able to take a tour and gain an appreciation of what to expect.
Karen and I spent the majority of the Flight in discussion and idea swapping and sharing ideas about social media and I felt honoured to be able to contribute my experiences of Podcamp to her experience and understanding of Social Media. Every session I attended and every discussion I experienced informed that conversation and subsequently benefited Karen. So I wanted to say thanks to you people of Podcamp for helping add to that content.
What did I gain from the flight conversation ? The realisation that beyond the “monetization” or “Value” of social media is the communities and groups that have already embraced the tools and built their networks online and are already self moderating and sharing the conversations relevant to their needs.
If you would like to discover more about how Young Adults are creating content and communities to support each other then you may be interested in Planet Cancer or I am too Young for this. Alternatively if you search You Tube or Facebook for Young Adult Cancer you will find content and conversations already in progress.
Thanks for reading.
Nik,
Thank you for sharing such a great story of how your exploration and fascination with social networking and media is finding REAL applications. Helping people connect, learn, and interact in ways that that have true value to them is what everyone involved in our great experiments hopes for.
I’m glad that you had the opportunity to share ideas, context, and experiences with Karen. Can you imagine the ideas she’ll be taking back to the people she works with, and how they’ll use the fruits of that conversation moving forward?
Regards,
Rick
I’m stunned. And thrilled. I was “too young for this” myself 15 yrs ago, and remember how crucial it was to get information to people- then it was an 800 number, and local support groups- but you are often so weak that getting to a group is difficult. And you bring up a very good point; when you are young, the experience is different.
What a fantastic use of soc net.
What a fantastic use of Second Life that would be. This weekend I have been talking with friends about the nightmare of miscommunication that beleaguers our annual camping weekends for refugees exiled in England, and the idea of using a Ning site (which I told them was like a yahoo group only much more fun) could really help us.
Reading your post, it only now occurs to me that not only would we benefit as a group of volunteers, but the refugees would also be able to use the site as a way of keeping contact with us after the event and with each other.
Maybe in future years, participants will be able to enter second life and get to know each other and the location before the weekend, so everyone will up to speed on itinerary, health and safety and where the loos are!
Nik,
Please tell Karen (if you’re in touch with her) to check out http://www.imedix.com
might be an opportunity there? i can make an intro if there is.
tyler
Sounds like the perfect fit for a virtual world – assuming the patients can get over the navigational learning curve in SL