International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) is an innovative nonprofit in every sense—from how they’re organized, to what they focus on, to how they solve important problems. When one of their project ideas won a notable research award, they applied their uniquely creative thinking to building the platform for that project on Communifire.
Nothing energizes us more than seeing how users stretch and flex Communifire to fit even the most unusual use cases.
In our conversation with Tiffany Westrich-Robertson, the CEO and original founder of AiArthritis, we got to see firsthand how the organization used Communifire to bring their award-winning vision to life with AiArthritis Voices.
“The core leaders at our organization, including myself, are all people that live with autoimmune or auto-inflammatory arthritis diseases,” Tiffany explained. “There are over 100 autoimmune diseases or auto-inflammatory diseases, which are diseases of the immune system. But only a handful present with inflammatory arthritis early onset.
“When we started the organization, nobody was focusing just on that group of diseases—and there’s so much overlap in our treatments and what we experience. Our mission is to help other people who are affected with AI arthritis diseases, and to have a voice alongside other stakeholders as equals so together we can solve problems that impact education [including awareness], advocacy [public policy], and research.”
In our call, Tiffany’s passion was contagious. The leadership team at AiArthritis are all former or current business leaders or educators. They are able to use their “professional hats” to be a communication bridge between a global pool of patients and all of the stakeholders.
“We kind of flip our hat around,” she shared. “We can go back and forth between doctors, nurses, government, industry pharmaceutical companies, non-pharmaceutical companies, researchers, etc.—pretty much anybody who has a stake in our healthcare. We’re really problem-solvers, and that’s where Communifire comes in, because we needed a platform to host all the projects that we do and facilitate these conversations.”
An Award-Winning Project Almost Ended Before It Began
In 2015, AiArthritis won a prestigious Innovation in Research award. Their winning project tested the idea that patients could, with the help of professionals as advisers, facilitate conversations that would bring more voices to the table and, as a result, influence research and drug development.
“To do that, we needed an online platform,” Tiffany shared. “We first tested the use of online communities. As a result of that project, we realized we could utilize this kind of platform not just in research or in focus groups, but to facilitate conversations in all the projects we do.”
Once the AiArthritis leadership team realized the possibilities, it all came down to finding the right platform to bring AiArthritis Voices to fruition.
In 2019, they thought they’d found the right solution with a platform purpose-made for disease-specific organizations. It looked like exactly what they needed to accomplish their mission to bring more voices to the table—and to make a difference in the lives and healthcare journeys of the 450 million people around the world who live with AI arthritis diseases.
Unfortunately, the reality was nowhere near their expectations.
“We spent over a year trying to make that platform work,” Tiffany said.
“We were so frustrated. We had no help. We had a six-page document with links to learn how to build our site, and the links went nowhere. There were no other instructions. The only way we could get feedback was to email one person—so every time we had a question, we had to send them a message. And then it could be days before we got an answer back, sometimes weeks. I would always have to follow up.”
The organization’s funders started to wonder what Tiffany and her team were doing. This second phase of their project kicked off in 2018, and here they were in 2019 with a platform they couldn’t get to work and that “looked like it was from 1998.”
“We were ready to roll. We had all of the ideas, everything was ironed out, but we were stuck on a platform that was causing us to fail. I’m a little embarrassed that we stayed as long as we did, but we knew we weren’t getting any money back, so we were going to try to make it work. I’m just glad we jumped ship finally.”
Cutting Their Losses—and Finding a Home for Their Vision in the Process
When Tiffany got to the breaking point, she enlisted the help of her assistants to look into other platforms that might better serve AiArthritis. Communifire was at the top of the list, and Tiffany was pleased with what she saw when she read through the information her assistants gave her.
Still—AiArthritis had been burned before. Tiffany wasn’t taking any chances.
Putting Communifire to the Test
“I have to give [Communifire sales rep] MeLissa kudos because I really put her through the ringer,” Tiffany shared. “We were coming from a place of despair, and we were so screwed over before. We knew exactly what we needed, we knew exactly what we wanted—and I’m not kidding when I say I must’ve sent her 50 or 60 questions. She would immediately respond back, day or night, weekend, didn’t matter.
“That alone told us this was going to be a good experience, because when it starts that way, then that really sets the stage.”
The Communifire sales and support teams were quick to give Tiffany all the information she didn’t have on the old platform—documentation, videos, and various ways to contact the company directly so she would never feel out on her own.
Launching Like a Rocket
Tiffany had big ideas when it came to launching the new AiArthritis Voices platform—and the Communifire support team was there cheering her on. Even when she wanted to shorten the typical 12-week launch timeline to three weeks.
She shared how the Communifire team responded.
“They said, ‘Three? Nobody’s ever launched that fast.’ And I said, keep in mind two things: One, we have had this in our brains for five years, so it’s not like we don’t already know what we need in there. And two, we have a platform that’s not working, so a lot of the content is a matter of translating it over.
“Everybody was really accommodating and encouraging—like, it’s going to be hard, but if you’re willing to put in the work, we’ll be here.”
Help Was Only a Click Away
While Tiffany and her team at AiArthritis had the vision and the information, they didn’t necessarily have everything they needed to launch the new platform on their own.
“I think the real icing on the cake was we were getting all of the information in, but where we lack as an organization is the developer part,” Tiffany said. “We have an eye for design—I actually have a degree in design, so I know what looks right—but we don’t have the technical skills. We were having tremendous issues designing the homepage.”
They watched video after video, but their homepage just didn’t look right. Plus, they were creating unique spaces for each project—and there were dozens—so not getting the homepage right had ripple effects on the design of all the project spaces.
“[I thought,] we’re going to end up making this look unprofessional,” Tiffany said. “So [our Communifire implementation manager] Nathaniel said, how about I take a couple hours that would’ve normally been our meeting, and I design one for you? And that’s what he did. And he created templates, so now all we have to do is copy the template. That was unexpected, but it really made the difference.”
How AiArthritis Uses Communifire Differently to Help Members Talk, Learn and Connect
AiArthritis is not set up like a typical foundation or company. Instead of joining a department, members join specific projects. So Tiffany and her team were intentional about how they built the AiArthritis Voices platform, limiting access and personalizing the member experience.
Members must first fill out an application to join, which AiArthritis administrators use to make sure the incoming member is a person living with an AI arthritis disease or they are the parent of a juvenile patient. Once the member is approved and granted a username and password for AiArthritis Voices, they are assigned to a site guide who reaches out to learn more about the member and what their interests are.
The most unique thing about AiArthritis as an organization is that while they are focused on supporting people with a certain set of diseases, they are not a support group. The way they built their platform reflects their focus with absolute clarity.
As Tiffany puts it,
“This is not a forum to have open-ended conversations. It’s a place where you can connect with opportunities to use your voice to impact our projects, to participate in learning experiences and activities, and to connect with other opportunities that we have to use your voice to impact education, advocacy and research.”
To that end, the homepage is a jumping-off point to spaces dedicated to the projects AiArthritis has done, is doing, or will be doing in the future.
“[We’ve organized it so] they can see what they can sign up to do, and if there are any learning activities that are happening in various parts of the space. They learn about it on the homepage, or by their site guide, and then there’s a menu that shows all of the spaces they can join.”
The theme of AiArthritis Voices is “talk, learn and connect,” and Communifire’s flexibility supports this theme at every step. The AiArthritis team made sure those three core elements were front-and-center in the top navigation.
“In discussions, those are our pre-determined conversations that our organization has decided on” Tiffany said. “It’s crafted so that the conversations are based on the project that we’re working on.”
“Under learn and connect, that’s where the activity happens. We’ve been using those to post examples of projects. For example, we have a ‘go to conference’ space, so all of the research sessions that we went to, we’ll do a report in learn and connect. … Also, if we have opportunities to maybe learn more from some of the researchers that were there, that would go under that space. It’s very directed.”
The exceptional online space that AiArthritis has built, and continues to shape and develop, is purpose-designed to guide members to make the biggest impact in this community. The clarity of purpose and focus on meaningful action is truly distinctive in the nonprofit space—and it’s resulted in a truly distinctive platform as well.
As Tiffany put it, “They told me it was customizable, but we are really putting it to the test.”
After struggling on the old platform for a year, AiArthritis saw their multi-year vision truly begin to form into reality with Communifire in a matter of weeks. “It was night and day between where we were and what we have now,” Tiffany shared.
This Time, Reality Exceeded Expectations
Just based on the available support materials, Tiffany figured Communifire would be much easier to navigate than the old platform—but the support she received from the Communifire team was, and continues to be, above and beyond her expectations.
“At first I was a little nervous to be putting support tickets in,” she shared, “but I got used to doing it. Any time we thought we hit a roadblock, we get the answer, and we get it fast. It seems like within an hour, there’s a solution. And if they don’t have it, they put it to a support ticket, and then they come back a few days later, and even if they don’t have the solution yet, they give an update.
“It’s still surprising to me. It’s not that I didn’t expect good service, I just am surprised how consistent it is, because you never know. When the company cashes the check, you don’t know. Is it going to drop off? And it hasn’t.”
Donor Feedback Is Pouring In
As important as it was that Tiffany felt her team was finally supported in what they were trying to do with AiArthritis Voices, she experienced even more impressive results very quickly—in the form of donor feedback.
“I’ve been able to show it to a couple of our pharmaceutical industry people whose money is going to funding this,” Tiffany explained. “They said ‘You are sitting on a goldmine here, because once other organizations get wind of how you’ve set this up, they’re going to run with it.’ And I said, they can try, but they don’t have the secret sauce. They don’t know all of the ins and outs of how we’ve master-crafted this thing.”
Part of the secret sauce, she admits, is making sure that every member on the platform is actively doing something with a project. If the member isn’t interested in any of the current projects, AiArthritis removes them from AiArthritis Voices so the conversations there can remain hyper-focused on what’s actively happening. The organization retains members’ details, though, so if a project comes up they might be a fit for, they can connect them with it quickly.
Tiffany shared an example based on something that happened recently.
“The FDA comes to us and says, ‘Do you have any patients who will speak on a panel for medical devices?’ And I can look through, and if they happen to not be in the site at the time, we can say, hey, we want you to start working on this project for the FDA, and we put them back in the site. So it’s like this constant moving around of seats at the table, if you will.”
Other funders have been impressed by this project-focused system, too. Tiffany shared, “When we finally showed it to a few of them, they were like, this is amazing. And a couple of them said, ‘We were starting to wonder, you’ve been talking about this AiArthritis Voices for two years, and it never came to fruition. We were wondering what was going on.’”
Results by the Number: 1 Year of Struggle With the Old Platform, 3 Weeks to Success With Communifire
For the AiArthritis team, the time from sign-up to site launch was 94% faster with Communifire versus the old platform. But we also must consider that the old platform never really got off the ground. Tiffany and her team struggled to get the basics in place for a year before they found Communifire.
Now Tiffany has high hopes for the big impact this new platform is going to make on the healthcare journey of the 450 million people around the world who live with AI arthritis diseases. “This platform is going to probably help us bring at least 25% more patients—just to start—to have a voice, to impact education, advocacy and research, than we’ve been able to do ever. We started in 2011. And I predict that within the first six months [of using Communifire].”
The organization is using a personal invitation method now to get new members onto the platform. On the roadmap, however, is the ability for current active members to send invitations to their friends.
Tiffany explained, “Once we get those people who are like, Wow, I’m making a difference, and they’re seeing the impact, they’re going to be invested. So we’re going to give them little graphic invitations so invite their friends to the table. I think we’re really going to see the numbers pop once people get it and they’re like, whoa.”
Dreams of the Future for AiArthritis
While the AiArthritis Voices platform is currently focused on the three core areas of learn, connect and discuss, AiArthritis plans to add more Communifire features to help their members take action.
AiArthritis is tackling their roadmap at lightning speed—and Tiffany assures us there’s much more to come soon.
“One thing we haven’t done yet, but we want to, is where the [Communifire] calendars can link to your regular calendar. We also have not utilized blogs yet, but we do plan to. [First we just want to make sure] everything is consistent. Clarity is better.”
It’s clear that “getting it right” is as much of an AiArthritis core value as innovation.
Tiffany reflected on her organization’s journey to this visionary new platform they built on Communifire.
“We are used to being the first to do everything. Innovation is not a word we’re unfamiliar with. We do it, we try, we fail, we do it again until we get it right. I know a lot of organizations, they don’t have that same perspective—but when you’re willing to take that risk, and hopefully the reward is high, which we believe it will be, you also have to put in a little bit more blood, sweat and tears.
“This all started with an idea that we had in 2015 to bring more voices to the table, and winning that innovation in research project. Everything has evolved from that moment. And this is the result.”