Twitter, RT, Tweet-ups and me
Kathy Kastner (@ability4life) thinks patient participation on health-related Twitter chats isn’t what it should or could be. While she recognizes the inspired contributions by e-patient Twitterers, such as @rawarrior, @stales, @chemo_babe and @jodyms, she feels patients remain under-represented compared with the effort and interest clearly demonstrated by other stakeholders. In this guest post, Kathy explains why she thinks the patient voice seems to be missing.
By Kathy Kastner
I opened a Twitter account mid-2010, as part of my web plan. With my second life as publisher, editor, writer, all-rounder of Ability4Life.com, I knew I had to open my heart and mind to social media. I am LinkedIn and Facebook’d. But it’s Twitter that’s really got me thinking. To be clear: I do not tweet about my daily goings on. In fact, often I don’t even send my own tweets – instead re-tweeting musings, links, insights that strike a chord or my fancy. These re-tweets (RT) are not from random sources. They’re usually from people who participate in common interest health groups, each of which has a once-a-week hour-long tweet-up (also known as Twitter chats or Tweetchats).
There’s health care social media in the US, Europe and Canada (#hcsm, #hcsmeu and #hcsmca respectively), hospice and palliative medicine (#hpm), nursing (#RNchat) and inter-professional practice (#IPchat #MDchat). And every one of ‘em is welcoming and encouraging.
These groups are different in focus than patient-based forums, communities and Facebook, populated as they are by a mixture of healthcare-related businesses and organizations, including communications, branding, products, consultants, writers and policy wonks. Occasionally, a patient – or someone related to a patient – will join. I have a foot in both camps. I’ve been in the business of health education and communication for a couple of decades, been a patient more than once, and been privy to family and friends’ health journeys.
These dual experiences are what have me thinking: Where is the patient’s voice in these tweet-ups? I find that, however well intentioned and well meaning these twitter confabs and their participants may be, it still feels like “them and us”. What’s often talked about is what patients need and want; data around patient behaviour; discussions about how to use social media to effectively connect, properly approach and smartly satisfy patients (aka healthcare consumers, clients).
Why are patients – many of whom are active in so many other areas of social media – not joining or staying with these groups? My thought is that this evolving social media tool is being seized by forward-thinking strategists who’ve been hobbled by organizational or bureaucratic realities, and who now embrace the collegial opportunities offered by social media. It’s this thirst for connection with those facing the same or similar roadblocks – not in the medical system but in the organizational system – that need satisfying before our patient voices can be heard, let alone listened to and acted upon.
I hope that time for listening and hearing comes soon, because patients and businesses that feed our needs can learn from each other.