Using a participatory design approach with patients and care providers
“I want to build an app.”
This is how many conversations start at iHub.
As an Innovation Strategy Manager, my job is to talk to innovators about their ideas which could unlock the promise of digital health to improve the quality of care for patients. My usual follow-up question is, “Why did you come to iHub, and why an app?” Usually the rest of the meeting is focused on identifying the problem the app will solve, as well as what it would look like and what app developer they should hire.
A big challenge with innovation is that the opportunity and promise of innovation is very exciting. We think of the magic of a Hackathon, that in 48 hours whole new solutions are built. However, to build a good app, product or service that people will use is hard – very hard. Most people don’t see that to go from idea to an app, product or service it takes a lot of time and effort. It isn’t something that happens overnight as it is often promoted in the media. For example, PillPack was started at a hackathon, but they also spent 12 weeks in an entrepreneurship in residency program with IDEO, a world-leading design firm. It took 6 years from the hackathon to its exit to Amazon.
iHub helps the innovator take a methodological approach to innovation; going from idea to an understanding and clear problem definition, what requirements are needed in a solution, testable and measurable hypotheses of the impact the solution will have, and a management plan for vendors and to advance the project.
With all innovation projects there are limited funds, time and effort (this is sometimes more constrained in the clinical setting). Because of these challenges, it is key to be strategic and efficient with how to use those precious resources. iHub works to help move through innovation in a strategic way. The key to success is having patience, discipline, and rigor in the early stages of the design and development process.
When Karen Fasciano, PsyD, came to iHub, our conversation was different: as the Program Director for the Dana Farber Cancer Institute’s Young Adult Program (YAP), Karen and her team had a clear vision for why they wanted to build an app:
“Our social networking website aimed to support young adults coping with cancer is less active than we would like and we want adapt it to a mobile application,” explains Fasciano. “We have secured a grant from a family foundation to make this change. An app would be a more compelling way to give our young-adult patients the psycho-social support they need with evidence-based knowledge, delivered in a way they will use it. I heard iHub could help us?”
I quickly got excited for two reasons:
First, the project: it was clear how building an app could improve care for this specific group; focusing around a clear problem/need and showing the true unique value a digital solution could provide, over other options.
Second, Karen’s outreach showed that our efforts to be an available resource to innovators was paying off: Karen had first come to us as a participant in an innovation program we ran the year before focused on improving behavioral health. Based on her experience, she was coming back now that she had a clear project.
With Karen and her team, we started with the hard conversations. While there are millions of apps out there, good ones are hard to build well. They would really need to do their homework. What they were trying to achieve – community engagement – might be one of the hardest types of apps to build and scale successfully. Fortunately, their Young Adult Program was built to cultivate community, and they knew this community well. More importantly, they knew how important it would be to include the community in the design process: they wanted to start with focus groups.
For an innovation team, this was music to our ears.
Dana-Farber Cancer Institute’s Young Adult Program serves young adult patients (ages 18-39) and addresses the unique needs and challenges this patient population faces in the wake of a cancer diagnosis. Photo: Sam Ogden.
Together we set off on the long journey of taking a structured approach to designing the app. Buy-in for patient participation is often easy, but setting expectations and getting buy-in for the patience to execute is hard because innovation is frequently sold as quick and easy (“can’t we just get a student to code it up”).
Karen and the team were up for the challenge. iHub made sure to provide them context of why each step was important. We embarked on a multi-year journey based on the most important pillars of both clinical intervention and technology development:
1) Evidence-based:
As experts in the field, it was critical to Karen and her team that the design of the product be built on a strong foundation of evidence-based theory and methods for supporting young adults with cancer. A firm evidence base is a big piece of the core value that Karen and the team could provide where a lot of other solutions fall short. We helped them translate those requirements into design criteria.
2) Patient participation:
The solution had to meet patients’ needs and be delivered to them in a way that they would actually use it. Karen and the team invited everyone in the Young Adult Program to participate. The response was enthusiastic: locals came in-person, with even one person driving in from out-of-state, while others joined via video chat. The iHub outlined a schedule of how to engage the group and facilitated the in-person meetings. Participants were even asked to do homework; for example, one session, we asked for people to tell us about apps they use in context of their cancer experience, specific times they used them and why.
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The next session we asked them to try a set of existing apps in the marketplace, some designed to support people with cancer and others designed for mindfulness and other apps. The group co-created the list of criteria for a new app taking the best of what already existed while filling the gaps for their unique needs. At every step the YAP patient group was asked for feedback, ideas, and direction.
3) Patience & Rigor:
We worked with the team to provide a structure and methodology to capture what they heard from patients and incorporate evidence-based interventions. It took patience to advance through a methodological process, to learn design principles and build requirements which truly represented the problem, the needs and wants, the evidence-based clinical practice, the value, and what has/hasn’t worked so far. This included creating big spreadsheets of ideas, finding themes, and then doing the hard work of filtering down to an “MVP” (Minimum Viable Product): what was “must-have” versus “nice-to-have” and prioritizing every feature, idea, and function.
After two years of patient workshops, surveys and suggestions, we were ready to find the right technology developer to start to build. The team had to find the vendor, navigate contracting and hospital approval processes, and finally to bring their product to life.
1) Find the right collaborator to work with from among dozens of development shops in the ecosystem:
The iHub team made connections and provided references to a few top shops in our network, but it was critical for Karen and her team to review and select the vendor that they thought was best. Selecting a vendor that you don’t end up working well with leads to higher cost, longer timelines and can cause a project to fail.
2) Navigate the hospital contracting and approval processes to start to build:
iHub and the Dana-Farber Innovation team helped Karen and the vendor navigate some of the approval processes. However, contracting always takes time in large institutions, especially, in this case because the contract needed to be signed off by both Brigham and Dana-Farber.
3) Work with the vendor to bring their hard-earned vision to life:
The best solutions result from when clinicians and developers work together. However, too often they don’t understand each other. Even with the upfront hard work to define the requirements, it takes time to get on the same page. The challenge to Karen and the team was how to translate what they needed in a way the developers understood while being open to the ideas the developers brought to the table…all without losing focus of getting to a true MVP.
With the strong foundation built through the rigorous approach, investing the time for vendor selection, and the chosen vendor’s experience in building community apps, the team was able to work quickly. rapidly prototyping a mockup of the app. The same patients who came up with the requirements were brought in to review and provide feedback. The developer then got to work on converting the prototype into a functioning mobile application to be called BanYAn; a smartphone app specifically designed to address the emotional needs of young adults coping with cancer.
Over the next few months, we will have the opportunity to see how this app does in real life scenarios: what needs to be added, what needs to be scrapped, or what needs to be improved. Most importantly, we will hopefully see that the app is helping patients get the support they want and need as they move through the challenges they feel every day, and make sure they know they are never alone in the journey.
“Exploring the intersection of technology and clinical interventions, especially those addressing emotions and isolation caused by illness, has yielded many lessons for our team,” stated Fasciano. “First, translating clinical knowledge to targeted technology solutions requires persistent back and forth communication and clarification between technology developers and clinicians who often speak different languages. Second, patient engagement provides an essential element in development. And lastly, without the guidance of iHub who helped navigate our journey, we would not have seen this level of accomplishment in our exciting new product, BanYAn.”