How The Red Sox Taught Me About Patient CommunitiesPosted: April 27, 2010
There’s a very specific bond that happens among native New Englanders around our baseball team. We love our team, and from April to October, no matter where we’ve been displaced, we sometimes act like we live and die by the Boston Red Sox. Well, things haven’t exactly started off great this spring for my team; however, I still spend about three hours nearly every evening tracking games on my mobile phone, tweeting about the most recent developments, and looking to gather resources from blogs and influential fan voices.
It isn’t rare for people to treat their sports teams as if they were family, and when you are that invested into something, you sometimes look for communities to join to help cope with the emotional toll. This is by no means an anomaly to fandom, and the ironic realization for me came because the early season has left my team on figurative life support. There are a lot of comparisons to the way supporters of sports teams interact in communities online with how those facing a health condition act.
My experience in health and patient communities is from the outside looking in, as a researcher, but from what I’ve seen, the metaphor works well to discuss some of the mechanisms of online patient groups. Here are five ways to look at the way those communities work – thanks to Red Sox Nation.
Community on the Good Days
Any time the Red Sox do something right, my Twitter and Facebook feeds often ignite with the news; I basically have an immediate group to celebrate the little victories throughout the marathon-like baseball season. There are definite parallels in health support communities online. For a great example, check out the nature of messages on a forum among those trying to quit smoking, and you’d see that the stories of success are just as frequent – if not more so – than posts about needing advice.
…And the Bad Days
Tough losses happen during a long season, and any team can go into a slump that often brings the spirits of its fan base with it, but online gives us a way to rally together and remind each other that it’s going to be alright in the next game. Patients in an online support community often seek similar traits of support, albeit around significantly more serious matters. Still, the gentle reminder to “not abandon blowouts” is applicable to both situations. A quick glance on some of the posts in a support group like Inspire will show that the need for a helpful ear and someone to say, “It’ll get better,” isn’t hard to find.
Establishing Personal Connections
There are definitely different sizes of patient communities online – some are really specific, and by the nature, much smaller. Even in some of the bigger groups, though, participants still get to know each other and build bonds of trust and credibility. Baseball works the same way: the Red Sox may have a larger national footprint than other clubs, but there is still a tight group that forms. There are some people who I’ve first been in touch with via Twitter or a community, and later gotten to know beyond what they discuss about baseball. A great example is the community around diabetes: even through a broad, diverse group of bloggers and support forums who retain their personal voices while discussing the condition.
Anytime, Anywhere Support Groups
With a mobile connection or wireless access, I can find my fellow members of Red Sox Nation just about wherever I may be. Since the community exists online, I can log in anywhere to rejoice or seek support with my fellow fans. Patient communities enjoy the same universality: the opportunity to find someone with the right experience and history around even the rarest conditions is possible, and it can be done at any time of the day on Twitter, a group on Patients Like Me or on blogs.
A Way to Get Involved
It doesn’t matter if it’s sports fandom or a health condition, the emotional investment in something is often what keeps people coming back to the community as it becomes a part of their life. One of the aspects of participatory medicine (the idea supporting the engaged patient movement) is that the online connection makes it possible for the individual to be more involved in their own healthcare, empowering them to feel more a part of their own health improvement. This is where the metaphor stops: talking about my team isn’t going to make the Sox win any more games (although it’s definitely cathartic), but for patients, getting involved can have definite impacts on their outlook for the future, health and happiness.