Wow, it’s really been a while since I’ve made a post on Crohnology’s blog — a really long while.
I’m writing to tell you a couple important new things: This right here is Crohnology’s new blog! Exciting! Wooo! And next I want to introduce you to a new face on Crohnology’s web accounts you might have noticed by now, Duncan Cross.
First, I’m trying to think of why it’s been so long since I wrote on the Crohnology blog. Designing, programming, and running Crohnology.com has been a considerable operation. And for the majority of the time since I started building the website in 2010, I’ve been running it alone.
Crohnology.com is no small web application for one person to support; there are over 7,000 patients on it now, and the complexity of the features that enable users to message, ask questions, record their health and treatments (over the web and text messaging), build health profiles, schedule meetups, for researchers to build and distribute patient surveys, automatic emails and notification preferences… well there is just a lot to it. Most organizations have huge tech teams running all this stuff. Although I have to take it back: I’m not really running it alone — the user contributions of patients on the network are the lifeblood of what makes Crohnology valuable. I’m really running it alone with the help of over 7,000 patients across the globe.
There was a time when I had a few more people and funding to run things — and this is a great topic for a future post — but that time has passed, it’s just me, a computer, and an online network of 7,000+ patients on a fully custom-coded website. The responsibility this entails has frightened me more than once.
A lot of new interesting developments in IBD treatments and research have happened since I first launched the Crohnology website in 2011. The microbiome. Fecal transplantation. Tons more things that will be topics of future posts. The Crohnology blog I custom-programmed was nicely integrated into the main Crohnology site and looked beautiful, but I just didn’t have time to code all the features to make it work well (like having it support multiple authors well) and for me to write about all these new developments while simultaneously running a team of people trying to build a patient-to-patient knowledge network, and working to acquire the resources to do so.
As I mentioned, I’m here to tell you a couple new things: This is Crohnology’s new blog — you’re on it right now. And this is the first new post on the blog (I plan on migrating over the old ones after getting this post out there). The second big announcement is that I’ve brought on the help of a person named Duncan Cross to be the editor of this blog. A couple months ago, I emailed out to our 7,000+ patients announcing I was looking for someone who could help run a new Crohnology blog and web presence and write interesting content that utilized and built on the powerful Crohnology data. I received an inundation of emails from talented patients and Crohnology users who wanted to perform this role.
Among the many people who stood out, Duncan Cross had been successfully running a blog about his Crohn’s for some time. His writing was well-informed, researched, and most of all opinionated without dogma, like a strong patient’s writing should be. I personally have strong opinions about the dark underbelly of our healthcare system, our pharmaceutical-industrial-complex, how our patient advocacy organizations are simply filling an economic role in this existing system, and the general way patients are seen (and treated as) as cogs in a commercial wheel. I wanted to find someone who shared a strong opinion on these topics and was neither going to water down his/her voice nor adhere to some rigid ideologic dogma. Someone whose true north was simply truth, and who believes that learning from what’s actually happening to patients is where to find it.
Duncan’s name might sound familiar to you: he’s been posting on our Facebook and Twitter account over the past few weeks. Now that we have this new blog up, you’ll start to see posts from Duncan here as well.
Duncan has lived with Crohn’s since high school, he’s gone through a series of different treatments including NIH clinical trials, and in 2006 had a bad flare that led him to get a semicolectomy. He started blogging in 2008 during health reform debates in the US because he didn’t see the patient voice in these debates. He’s been a helpful contributing member to the Crohnology community as a user, and I’m excited to have him here on this blog and posting on Crohnology’s web presences.
When I was building this blog, Duncan pushed me to outline a mission statement for the blog. One that would define the voice and ethos of the posts here, to faithfully guide our voice and content. I took a shot at it, and after some refining, we arrived at this:
Crohnology is the smart and skeptical voice of IBD – open-minded, but ready to question everything. We hold personal experience with the disease above what others tell us – yes, including doctors, relatives, and the Internet at large. We recognize major flaws in what our healthcare system knows about our disease, and survive by discovering what works for us. We thrive by building a patient knowledge community to connect patients to share and learn from each other. This blog is the voice of that community.
This ethos exists at the footer of this blog. It’s the guiding principle of the posts we have here. It’s likely that as time goes on, we’ll update this mission statement in ways that continually push this blog to be a genuine voice of patients helping and learning from other patients.
Thanks for being with me on this journey of Crohnology, and I hope you like what is to come.
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Welcome, Duncan! And welcome, you, the reader, to Crohnology’s new blog!