Nikki Estanol was diagnosed with Rheumatoid Arthritis in 2007 at 17 years old. She felt extremely lonely at that age and very much like this disease was out of her control. It wasn't until recently that she has taken the driver's seat in managing her health, especially through technology and social media.
Nikki has found that social media like Tumblr and Facebook have exemplified the potential for advancing the practice of medicine, improving health and empowering patients to rise to a more active role. For example, the support group she is a part of on Facebook advances her medical care by helping her connect with ePatients all over the world on a personal and immediate level. It's become quite easy to gain information about different treatments, responses, and side effects from the people who deal with them.
Using the "Track Tags" feature on Tumblr, Nikki kept an eye on tags like #rheumatoid arthritis, #arthritis, #chronic illness, and #chronic pain. Doing so has allowed her to connect with different people and get an insight into the more emotional side of things through viewing blogs. That's where she found the support group "My Immune System Hates Me (A Youth Support Group for Rheumatoid Arthritis)."
Differentiating from an in-person support group, this form of technology allows a connection to people all over the world, any time of the day, professional or patient. It improves health by bouncing ideas and information off other people, and can also improve quality of life by having a support group readily available instead of waiting a week to meet. Medicine X is the quintessential conference that pushes boundaries and expands horizons to show the importance of these aspects in a patient's life.
Nikki wants to gain as much knowledge as she can from both medical professionals and ePatients. From the medical professionals that will be at the conference, she would like to learn how they intend to use social media to engage with their patients and what their goals are in doing so. Where do they see this going in the future and - in the sense of "participatory medicine" - how have they (and their patients) benefited from using technology as opposed to manual papers and face-to-face meetings?From the ePatients attending, Nikki wants to be come familiar with how each person utilizes different technologies to manage their own illness under different circumstances. For example, in terms of the design track, she would like to know how they use specific or certain technologies to get around physical or mental hurdles. She also hopes to obtain different perspectives on what ePatients find as the most important element to managing their health via social media and technology: which apps work best for you and which aspects of your health do you wish to more intensely track with that app? How will being engaged in designing different tools help you? How do you use social media to advocate and create awareness for your illness without worrying about the judgment you receive, and how does that differ from face-to-face interaction?