SPM member/legend Regina Holliday, a powerful force for grass roots empowerment and creator of The Walking Gallery of Healthcare, got whooping cough (pertussis) this winter, despite having been vaccinated just a few years earlier. The UK magazine Pharma Times interviewed her for their inside-back-cover feature in the current issue.
She details how she took advantage of internet resources to inform herself, including finding whoopingcough.net, a site by retired UK family doctor Doug Jenkins, who tweets as @WhoopingCoughDr. (It’s a hand-made 1990s style site, but click the “Enter” link and explore – what a do-it-yourself kit, for professionals and patients alike!)
Note some important specifics of Regina’s story:
- She doesn’t use the internet instead of doctors – she uses it to supplement them.
- She doesn’t expect her providers to do everything – as a responsible citizen, she does what she can to pitch in herself, to share the work.
- She shared what she learned online with her doctor, who didn’t tell her to “stop that.” (Yes, the world is changing.)
- Then, having discovered that despite her vaccination she had it, she proceeded to use social media to spread the word, including notifying the CDC:
I have #WhoopingCough or pertussis if you prefer that label. Last vaccinated in 2010, so I hope the @CDCgov is paying attention to #hcsm
— Regina Holliday (@ReginaHolliday) January 9, 2015
Check the article for more on what she learned (through social media and the web!) that hadn’t come to her through traditional channels.
Remember: the Web and social media are the “capillaries” by which information “nutrients” can flow to us in the 21st century. For an animated illustration of this effect, see the BMJ article From patient centred to people powered: autonomy on the rise and scroll down to this video:
Great article. Thanks for sharing. Every patient should have this same outlook. Unfortunately many patients do not even realize how they can be their own advocates and be active participants in their healthcare. Let’s continue to raise awareness for patient empowerment!