We moved our blog to a snazzy new home at crohnology.com/blog! Please find our latest posts there at crohnology.com/blog.

We moved our blog to a snazzy new home at crohnology.com/blog! You can find our latest posts there.

We're starting to open the private beta gates just a tad, and adding some new users to Crohnology.

Over Thanksgiving weekend, I had the pleasure to do a video interview about Crohn's, Colitis, and Crohnology with Vic Phillips of BehaveYourHealth. BehaveYourHealth is a new website started by Vic Phillips where he posts interviews with founders building startups in the health space. As you may know, I was diagnosed with Crohn's at age 12 and that has been my inspiration for building Crohnology for patients around the globe.

In the video above, I talked in depth with Vic about Crohn's & Colitis (collectively Inflammatory Bowel Disease) and how the nearly 1.5 million people who live with these conditions manage their health. 

In the interview, I describe to Vic my self-experiment with Pig Whipworm and show him the year of symptom data that I tracked through Crohnology.com to evaluate the effect of inoculating myself with these parasites as treatment for my Crohn's.

We talked a lot about how the standard 5-10 minute doctor visit doesn't allow adequate time for your doctor to fully understand your condition or help you live with the complexities of the disease. People with IBD need to take charge of their own health if they are to successfully manage their health in our current medical system. You have to become an empowered-patient. There is no other option.

Thanks so much to Vic for providing me with this opportunity!

Wow. Thank you everyone who has showered Crohnology with so much love and support over the last couple of weeks.

As some of you know, two weeks ago, the blog post I wrote about Demoing Crohnology at Medicine 2.0 went viral. Within a couple hours of posting, it blew up to #2 on the front page of Hacker News. Literally overnight, it was viewed by over 15,000 people. Mentions about it and Crohnology.com ripped up Twitter. I got hundreds of direct emails from patients all over the globe wanting to join the Crohnology beta. My email inbox was flooded with more beta sign ups than I could ever have imagined. It was so rapid, I could hardly keep my website's email service provider up. All of this felt absolutely amazing. =)

The best part was the overwhelming flood of warm and positive emails, comments, and feedback. This indicated to me more than ever that there is clearly pent-up need by patients around the globe for a site like Crohnology. I cannot wait until I can release it to you all. Thank you so much. You've filled me up with so much motivation, and touched my heart.

The door to the Crohnology private beta is opening, just slowly. I'm letting in people to the rate at which I can manage their feedback and learn from them. I had no idea so many people would sign up--thank you so much for your overwhelming response. The beta is so far going amazingly well, and I'm working as fast as I can to get everyone in. With that in mind, I'm looking for developers that want to help.

I encourage you to take a look at the passionate and insightful discussion that the blog post spurred on Hacker News. 

By the way, demoing onstage at Medicine 2.0 at Stanford went absolutely fantastic. It was amazing to spread the word of Crohnology to hundreds of doctors, researchers, journalists, and other patients. I am told that a video of it will be released soon. As soon as it is, I'll post it here.

As always, you should follow Crohnology on Twitter and Facebook if you aren't already. You can follow me (Sean Ahrens) directly at @seanahrens. Thank you.

I send a huge thanks to the following people for helping me out during that crazy crunch time that followed the Hacker News coverage: Sasank Mudunuri, Ryan Weald, Molly Reisman, and Marcio von Muhlen. You are amazing. Thanks so much. And another huge thanks goes out to all the people with Crohn's & Colitis, their friends and family, and other amazing people that have shown so much support for this project. You keep the fire burning in me to keep on.

As some of you may know, at the age of 12, I was diagnosed with Crohn's Disease, an incurable, inflammatory disease of the digestive tract. After having several devastating flare-ups, I went on a quest to do anything I could to treat my disease by experimenting with numerous alternative and experimental therapies and diets (including intentionally infecting myself with parasitic worms).

When I realized that the information I had built up from this quest could heal other patients, I went on another quest: to meet as many patients as I possibly could and share the information I had learned with them. But I knew there were tons of other patients around the world who had gone through their own journeys and had extremely valuable information to share themselves. And by sharing it, they could heal more patients. And so I went on a new quest: to make it possible for Crohn's & Colitis patients around the world to share and learn from one another.

Crohnology is that quest. Crohnology is a place for people with Crohn's & Colitis to share the extremely valuable information each has accumulated on their journey to better health. And in turn, heal others by informing them of treatments that work.

And today I'm proud to announce that the organizers of the Medicine 2.0 Conference at Stanford are going to have me on stage to demo Crohnology!

This is going to be a really awesome day--this Friday Sept 16. It will be the first real public debut of Crohnology, which has so far been in private beta.

I'm excited to show you what we've been building, and how our awesome community of e-patients with Crohn's & Colitis are engaging in a powerful, new way: a way that enables them to meet patients near them, share their most successful treatments, and keep people informed about their health. It's fun, it's engaging. And most of all, it's extremely empowering.

If you're a patient and want to join, email me at beta@crohnology.com, or request an invite at Crohnology.

You should follow Crohnology on Twitter and Facebook.

A big thank you to everyone who has gotten me this far including the entire C3NProject Team, Michael Seid, Peter Margolis, RockHealth, Halle Tecco, Leslie Zeigler, Bassam Kadry M.D., Larry Chu M.D., Ian Eslick, Marcio von Muhlen, Rick Morrison, Nikolai Kirienko, Ryan Weald, and many more--most of all, the engaged and giving e-patients on Crohnology.

Crohn's and Colitis are isolating conditions. Because they are invisible illnesses, it's impossible for a patient to walk down the street and identify another. As a result, we patients are disconnected from each other by default. To be connected to other patients, it takes conscious effort.

Friendships in real life are created by people being put into situations that allow them ample time to get to know others socially -- for example, you meet someone at work, at school, or at a party.

Patients with Crohn's & Colitis don't have a natural setting for this sort of socialization. As a result, becoming close friends with other patients has to be a result of a created situation. It requires looking for others online or it requires setting up getting coffee with that cousin of your parent's friend's friend who you were told through the grapevine has Colitis. The truth is most patients don't do it. It's too much work, the odds that you will really connect with that person are too low, and the benefit is too amorphous.

What I'm saying is that Remicade, an intravenous medication for IBD, changes all of this. It takes disconnected and isolated patients and builds connection and empowerment among them. How could a medication for Crohn's & Colitis do this?

(download)

Click here to download:

how-remicade-infusion-pow-wows-are-empowering-patients-yisAxjBebbcoAcqcmqJI.zip (489 KB)

Remicade is the only popularly prescribed IBD drug of which I know that is administered in groups. Remicade is administered by infusion--in other words, by a slow intraveneous drip. Every eight weeks, patients who take Remicade visit their doctor's office or an infusion center to receive this treatment, which usually takes about four hours. Oftentimes while this happens, they sit in a circle with other IBD patients. These Remicade "pow wows" are sometimes the longest time that patients have ever sat in front of each other.

Sitting in front of another patient that has been spending their life going through the same private condition as you is extremely empowering. You get to swap war stories. You get to tell each other about the crazy treatments you've tried; the crazy symptoms or drug reactions you've experienced; the crazy social situations you've encountered. What you start to get is validation. You get validation that all of the crazy things that you've been going through aren't crazy at all. You learn that you are not alone.

This validation is empowering. It translates into confidence. It translates into unity and comradery with other patients. You go from feeling like a isolated victim to feeling like a cause-driven commanche fighting alongside a band of warriors*. Your spirits rise with this newfound sense of community. And you begin to realize that the most valuable resource available to you in your care is sitting in the chairs around you: your fellow patients.

Let the patient revolution begin.

Follow Crohnology on Facebook and Twitter. I'm Sean Ahrens. I've had Crohn's Disease for 13 years. I'm building Crohnology to take the power of this community, and the knowledge sharing that comes with it, and put it online.

* To very poorly paraphrase Michael Seid, M.D. of the C3NProject

Just three days ago, a new IBD symptom tracking app entered the App Store. It's called myIBD, and it joins the likes of several iphone apps designed for tracking IBD symptoms. These iphone apps, as of today, are:

• Crohn's Diary (by Centocor Ortho Biotech, Inc.)
• Gi BodyGuard (by Canadian Digestive Health Foundation)
• GIMonitor (by WellApps, Inc.)
• MyGiTrack (by GI Track, LLC)
• PooLog (by AvatarLabs, Inc.)
• Wellness Widget (by UCB Pharma, Inc.)

(download)

Click here to download:

a-review-of-myibd-a-new-crohn-s-colitis-health-tracking-app-yBwsCyEaDeswHJscBjfc.zip (435 KB)

MyIBD is developed by The Hospital for Sick Children in Toronto. Oddly enough, "MyIBD" also happens to be the name of a non-profit (http://myIBD.org) that is funded by Abott, Centocor, and UCB. MyIBD, the iphone app, is obstensibly unrelated to this organization.

Over the last couple days, I had a chance to play with myIBD and figured it would be helpful to share my findings and impressions.

MyIBD allows you to log the classic IBD symptoms, like stools and pain, as well as some less common ones: naseau, appetite, pain after eating, fatigue, stress, general well-being, and free-form "other issues". There are things I like, and things that could be improved. Let's dig in:

Logging stools

(download)

Click here to download:

a-review-of-myibd-a-new-crohn-s-colitis-health-tracking-app-lFmyEIfvfCcDmltvfjzq.zip (169 KB)

The good:

• You can easily express with sliders details of a stool record: consistency, urgency, and blood. Each slider scales from 0 - 10. The icons for each of these attributes are clear (eg. one exclamation mark for low urgency and three for high urgency).
• You can add a freeform note easily to each entry.

What could be improved:

• It would be nice if the sliders had verbal anchors that gave a word-based interpretation of each number (eg. what does '6' blood, mean?) A great blog post on this topic can be found at http://blog.steepster.com/post/226679106/better-rating-system (thanks @rypan)
• I find it really odd that the app asks you whether the entry was for day-time or night-time. That is simpler than entering the exact or approximate time, but simply having the timestamp of the entry default to now (the present time) could be a simpler approach. If the user is back-logging, then the day-time or night-time selection could be a viable option to override this default.
• The default view of all your stool entries makes seeing past entries cumbersome. By default, you only see a single date's entries. To see previous date's entries, you must manually specify the date. It makes an impossibility of seeing, at a glance, your past week's or month's records.

Logging Fatigue, Stress, General Well-Being, Naseau, Appetite, and Pain after Eating

(download)

Click here to download:

a-review-of-myibd-a-new-crohn-s-colitis-health-tracking-app-FnGvxodvAJaqImuzDeyH.zip (188 KB)

The good:

• You can log lots of symptoms: fatigue, stress, general well-being, naseau, appetite, and pain after eating.
• Intuitive icons for Fatigue

What could be improved:

• The information architecture for logging these symptoms is quite unintuitive. To log naseau, appetite, and pain after eating, you click "Food" on the menu page (No, clicking "Food" does not allow you to log food). To log fatigue, stress, or general well-being, you click "Mood". I'm convinced that doing a session of Card Sorting (see http://en.wikipedia.org/wiki/Card_sorting) with IBD patients would lead to an information architecture that is much more intuitive.
• The directionality of the sliders is sometimes reversed, and this can be confusing. As you would expect, a score of 10 for fatigue or stress means badness, and a score of 10 for general well-being means goodness. This app tries to keep the "badness" end of all sliders to the right; to do so, it flips the "general well-being" scale to go from 10 to 0, instead of 0 to 10. The idea behind this makes some sense after all (its an attempt at consistency: sliders pushed to the right are bad, sliders pushed to the left are good). This interface decision, unfortunately, seems to make the interface more confusing: pushing my "general well-being" slider to the right to the right to indicate I'm feeling bad just feels wrong.
• Icons for stress, general well-being, naseau, and pain after eating are not very clear representations of these concepts. (I can't say that coming up with clear icons for these would be an easy task, however)

Logging Pain

(download)

Click here to download:

a-review-of-myibd-a-new-crohn-s-colitis-health-tracking-app-cotgtsAnqgmvpkkinGue.zip (175 KB)

The good:

• You can log both pain intensity (0-10) and specify the location by tapping on a picture of an abdomen. Intuitive.

What could be improved:

• Pain intensity, like the stool attributes, are not anchored to qualitative values (eg. what does a pain level of 4 mean?). Consider using the Wong-Baker faces Pain Scale (see http://www.wongbakerfaces.org/ ).

The Payoff (What do I get out of this?) 

The next screen I'm going to show you is the Payoff. This is the whole reason you've been tracking. This is the reward for all the hard work you've put in by religously recording your symptoms day in and day out. This is where the all the hard-core software programming and beautiful visual design makes you feel good about all that tracking, and helps you come to a new understanding of your health. Drum roll please....

(download)

Click here to download:

a-review-of-myibd-a-new-crohn-s-colitis-health-tracking-app-asFfalprzympnoGynGJr.zip (107 KB)

Unfortunately, this graph is very confusing. It has three axes, and four unlabeled lines. What does it mean?

Giving patients the ability to track their IBD symptoms is less than half the puzzle. For them to actually do it, you need to give them motivation. (See http://www.behaviormodel.org/). Would you invest tracking your symptoms everyday if all you got out of it was a graph like that? Would you lock all your tracking data into one system if that were all the reward? I didn't think so.

The Payoff is the screen that rewards the user for all their hard work and input everyday. It is the screen should be the one that is given the MOST design attention. After all, we're not trying to solve the patient's ability to track. Pen and paper gave people that ability since IBD was first discovered. We're trying to motivate them to do it, by giving them a very valuable payoff, which at the very least should be a thank you, a beautiful picture, but more hopefully it's a visual that gives them insight into their condition that they didn't have before. It could even be the added value of being able to do something with the data that they couldn't before when it was on pen and paper (like instantly letting their friends and family know how they are feeling). 

Unfortunately, this app falls flat on this regard.

The good:

• You see a graph.
• You get to control which lines show up on that graph (for the stool graph: consistency, urgency, time of day, and blood)

What could be improved:

• The graph is quite confusing.
• There are no line labels.
• There are three axes - I'm still trying to wrap my head around what this means.
• The scale of the timeline is not consistent between dates (ie. the slopes of these lines cannot be used as interpretable information).
• Getting to this screen takes digging deep into two different navigational screens. 

Conclusion

It's great to have more mobile software for IBD health tracking. I give major props to The Hospital for Sick Children in Toronto for funding this project.

The basics of this app (like logging stools and pain) are intuitive. Logging more nuanced symptoms (Fatigue, Stress, General Well-Being, Naseau, Appetite, and Pain after Eating) are made difficult by an unintuitive information architecture (ie. finding your way to the right screen is confusing). And lastly, the Payoff / graph (the whole reason you'd be logging in the first place) was not given enough design or development attention. As a result, the app doesn't do much to motivate the patient to track. 

So I'll leave you with one call to action. Designers and developers working on health tracking apps: for a patient to track their health on a daily basis, they must have both motivation and ability. Give them the ability through easy and intuitive interfaces, but don't forget to motivate them through a great payoff, insights, and rewards--eg. helpful graphs and views of the data that make the tracking well worth the time given.

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