The Crohn’s & Colitis Foundation’s New App Meets Crucial Needs

At the intersection of patient and foundation needs

By Judy Hoffstein

I was diagnosed with ulcerative colitis, an incurable and often hard to treat chronic inflammatory bowel disease (also known as IBD) when I was 23 years old. This was some decades ago.

Because my disease was often not in control, I experienced a very typical symptom of ulcerative colitis and Crohn's disease patients – frequent bowel urgency. It is hard to describe the stress and pain that patients undergo while searching urgently for a bathroom. So, when I got my first iPhone around 2010, one of the first apps I looked for was a restroom finder. I had become accustomed to hunting down restrooms when I traveled, but I was excited at the thought that maybe an app would make that search easier.

And I did find restroom apps – but each one that I downloaded, I soon uninstalled. Bad data – combined with bad interfaces and an inability to easily provide feedback – made them frustrating, even once leading me in the opposite direction of an available restroom.

In 2018, I joined the Crohn's & Colitis Foundation as chief marketing and communications officer – an exciting opportunity to bring the years of experience I had gained in the for-profit world and apply them to a nonprofit organization whose mission was so close to my heart.

Once here, I learned more about the disease and its impact on patients, which was more than I had ever realized. One concerning fact is that a large number of patients are embarrassed by this disease and are uncomfortable speaking about it. As a result, IBD is not well known, and many patients experience delayed diagnoses because they may neglect to discuss early symptoms with their doctors.

This lack of disease knowledge made my work as a marketing and communications professional, with dual goals of increased patient education and fundraising, more difficult. On the educational side, I had to grapple with the challenge of getting patients to speak to their doctors more to speed diagnosis. On the fundraising side, I needed to focus on increasing awareness and understanding of the disease among the general public. They had to understand why Crohn's & colitis need cures before we could hope to grow our fundraising base.

It was clear that to meet these goals, we had to start at the very top of the funnel and increase disease awareness. This would meet the objective of serving patients by getting them diagnosed more quickly and serve fundraising by increasing understanding and empathy among the general public.

I began thinking about the challenge, and how the Crohn's & Colitis Foundation could increase public knowledge of these intestinal diseases. To begin, I collected some baseline metrics, and learned that while the vast majority of Americans – over 85 percent – had heard of Crohn's disease, ulcerative colitis, or IBD, only around one third of the population knew more than the name. (Slightly fewer than 1 in 100 people are actually diagnosed with any form of IBD.) Increased awareness of the disease symptoms, and the dangers, pain, and embarrassment of IBD, were clearly table-stakes for my new role.

My first step was to seek sponsorships for a public service announcement in which we could highlight disease symptoms and increase disease knowledge among the U.S. population. That campaign, developed by FCB Health and sponsored by Takeda, Janssen and Bristol Myers Squibb – which launched in December 2020 – has been extremely successful in gaining distribution and is now driving increased web traffic to the Foundation in the markets where it has been distributed.

But now we had to address the next challenge. How could we build on this initial momentum and, ideally, create more engagement? And maybe even get some press for the Foundation?

In discussing the lack of awareness of existing restroom access legislation with a colleague on our Education and Advocacy team, she mentioned that a restroom app had been created by an IBD-focused nonprofit in another country. This piqued my interest – here might be a true convergence of my personal needs with my business goals.

Our initial market assessment revealed a broad need, even beyond IBD patients: There are simply insufficient public restrooms in the United States. This has been noted by multiple news stories (here, here, and here) in the past few years, particularly as the problem was further exacerbated by COVID, when many business-owned bathrooms were closed to the public.

After 15 years of promoting restroom access legislation for our patients (which has now passed in 18 states), we realized this challenge would likely not be solved through regulation — because awareness of the legislation remained stubbornly low among both businesses and patients.

Together with my colleagues in the Foundation's Education and Advocacy group, we decided that appealing to the human kindness of businesses might ultimately help us achieve our goals.

We didn't want to reinvent the wheel, but an initial exploration with the few existing restroom app providers revealed several gaps, both in their current capabilities and their planned roadmaps. To meet the needs of our patients, and make headway toward our goal of increasing disease awareness, we would have to build our own. We were lucky to quickly identify a vendor that had created a template-based app building service, which dramatically reduced our upfront investment cost as well as the ongoing maintenance expense. Suddenly, the new app concept became feasible, and the development process began.

The goal of the app is multi-faceted:

  • Serve patients by providing them with an easy way to find restrooms when on the road;
  • Build awareness of the diseases through app promotional efforts; and
  • Educate app users who are IBD patients about the disease and the Foundation, through links to the Foundation's website.

The app is unique in that, in addition to crowdsourcing, we are seeking businesses to join us by submitting their restrooms. We've already joined with Home Depot, Just Salad, and other retailers and restaurants who are providing their locations to us – just because they want to help.

To extend our reach, we also partnered with 13 other nonprofits in IBD and adjacent spaces to launch the Open Restrooms Movement, encouraging businesses to open their restrooms to the general public as an act of human kindness. We also reached out to influencers, getting some great pickup which dramatically increased the reach of our own social media.

The early results are exciting and promising. We are delighted that our lead sponsor, Eli Lilly, enabled us to build the app and offer it at no cost to patients. It launched on February 8, 2022, with over 45,000 restrooms loaded into the app. Over 3,000 are from partners including Home Depot and Just Salad, while the remainder come from intensive pre-launch crowdsourcing efforts. We achieved over 9,000 app downloads in our first few weeks, and over 8,000 unique visits to our open restrooms and app pages to date.

On a personal note, it's beyond gratifying to see that the cumulative experience I've gained over the years, from direct response marketing to product development to developing new technology strategies and platforms – can now so clearly be leveraged to provide direct benefits to a patient community that I care deeply about. But we're just at the beginning of our journey toward building increased disease awareness and familiarity.

And now for one last bit of business: We welcome more business partners! Our research indicates that nearly 80 percent of our patients say they are somewhat or very likely to patronize a business more if the business participates in an app like ours. Why not join us? Please reach out to me directly, or fill out our form here.

The views and opinions expressed are solely those of the contributor and do not necessarily reflect the official position of the ANA or imply endorsement from the ANA.

Judy Hoffstein is the chief marketing and communications officer of the Crohn's & Colitis Foundation.