Inflammatory bowel diseases (IBD), including Crohn disease and ulcerative colitis, are inflammatory conditions of the intestines that can cause debilitating symptoms and decrease patients’ quality of life [1,2]. Accurate information and education are important aspects of IBD treatment, as they can improve the quality of care and help patients cope with IBD-related worries and concerns [3,4]. However, critical knowledge gaps have been identified among patients with IBD, including lack of knowledge about the disease’s causes and symptoms and medical treatments and side effects [5-7]. Consistently, a large Swiss study assessing informational needs and concerns in 728 patients with IBD highlighted that the information patients received about their disease was insufficient [8].

Many patients are unhappy with the information they receive after diagnosis. Although most would prefer to receive educational content through their doctor’s office, their education needs are often not met in this setting [7]. Information provided is commonly based on clinicians’ assumptions of what patients need to know and is not always aligned with patients’ actual needs [4]. Therefore, many patients turn to other sources, including the internet and social media, to obtain additional information, share their experiences, and connect with other people with IBD [4,6,9]. In fact, in our previous study that used social media data to examine patients’ understanding of the risks and benefits of biologics in IBD, more than 25% of posts were from people seeking information and support through the online IBD community [6]. Although there is growing interest among patients to use social media for IBD-related information, information on the web is misleading and often of low quality [9].

Involving patients throughout educational materials development is critical for a deeper understanding of their expectations and addressing their needs. Design thinking—an iterative human-centered approach that emphasizes empathy, collaborative thinking, prototyping, and learning from failure—is well suited for designing interventions from the perspective of those impacted by it [10,11]. This methodology emphasizes the use of qualitative research methods within a structured framework for design purposes and is used across industries to improve product development, user experience, and customer service. Given the increasing focus on patient-centered care, the use of design thinking in health care is also gaining interest. By prioritizing end users’ core needs and continuously integrating their feedback, design thinking offers a way to develop interventions, including digital solutions that are successful, acceptable, and useful to the patients [12-14].

Design thinking has been applied to develop patient- and provider-facing interventions across diverse health conditions, including diabetes, chronic obstructive pulmonary disease, and posttraumatic stress disorder, among others [15]. Although several educational interventions have been developed for IBD, few were informed by patients’ input. In these studies, design thinking was implemented with various degrees of rigor. Not all studies used direct end-user input to assess users’ needs, and none reported brainstorming or ideation sessions, which are essential for the collaborative generation of solution concepts for the target population [4]. In addition, previous studies did not obtain end-user feedback on low-fidelity prototypes [15], an essential step that allows the design-thinking team to get user feedback at an early stage in the intervention-development process [10].

Here, we aim to gain an in-depth understanding of the unmet needs and expectations of patients with IBD for web-based educational videos. We then used these insights to inform the development of a series of short educational videos optimized for dissemination through social media. We applied design-thinking methodology to understand patients’ experiences, identify their challenges, and obtain iterative input on video prototypes during the development process.

To guide our qualitative research methodology, we applied a design-thinking model developed by IDEO, a global design-thinking company that creates human-centered products, services, and organizations. This model is widely used to explore solutions for social problems faced by communities and uses 3 iterative phases to design innovative solutions [16]. In the first phase, called the inspiration phase, researchers learn about people’s lives, preferences, expectations, needs, thoughts, emotions, and challenges. It consists of collecting stories and gathering inspiration from patients and requires building empathy to understand what they need and how they behave, feel, and think. In the second phase, called the ideation phase, ideas are generated by the research team, which are then converted to low-fidelity prototypes that can be tested by end users. The third and last phase—the implementation phase—consists of testing high-fidelity prototypes before producing the final product and launching it into the market. Multimedia Appendix 1 shows our study design based on IDEO’s design-thinking model.

For the inspiration phase (phase I), we included patients with different disease severity, literacy, and digital levels. Both the 2 focus groups included a diverse representation of 5 to 6 typical patients with IBD, including participants from diverse age groups, genders, races and ethnicities, and IBD type (Multimedia Appendix 2). By recruiting a diverse sample, we aimed to obtain broad perspectives and insights regarding the needs, expectations, and traits of potential viewers of future videos. For the interviews, we recruited 6 patients with needs and behaviors that differed from those of typical patients. We included patients with a particularly mild and severe disease course, a patient with a recent IBD diagnosis, patients with low health and digital literacy, and a patient with reduced access to care. Their inclusion in the study population helped us generate additional insights and identify high-priority issues that need to be addressed in the educational videos (Multimedia Appendix 2).

In the ideation phase (phase II), we recruited a diverse group of patients with IBD for the 2 focus groups (6 patients in each) to obtain feedback on the scripts. This phase included participants who previously participated in the inspiration phase to confirm that we correctly interpreted what they told us and appropriately translated the findings into the video scripts. We also included new patients during this step to ensure the transferability of the results to other patients. Finally, in the implementation phase (phase III), we recruited a convenience sample of 10 patients with IBD who had not previously participated in the study to obtain feedback on the prototyped videos. By recruiting a group of new patients in the final phase, we aimed to collect unbiased perspectives.

Semistructured interview guides were developed for the focus groups and interviews (Multimedia Appendix 3). All discussions were audiotaped and transcribed with the consent of the participants. For the focus groups, a researcher moderated the sessions while 2 other researchers recorded detailed notes; 2 researchers conducted the interviews. Data on demographics, disease characteristics, medical literacy, and digital literacy were collected using a short survey before the focus groups and interviews.

In the inspiration phase (phase I), we conducted 2 in-person focus groups and 6 phone interviews with patients with IBD. The semistructured interview guide (Multimedia Appendix 3) included open-ended questions such as “What type of challenges did you deal with when you were first diagnosed with IBD?”, “Do you discuss treatment options with your doctor?”, and “How can educational videos help you participate in your treatment decision?”.

In the ideation phase (phase II), 2 in-person focus groups were performed with patients with IBD to gather their opinions and perceptions of the initial video scripts and prototypes of the characters. The semistructured interview guide (Multimedia Appendix 3) included questions such as “What are your thoughts on the content of each video?”, “How does the video improve your knowledge?”, “Does it reduce your anxiety or fear or depression?”, and “What do you think about the animation characters?”.

In the implementation phase (phase III), 10 in-person interviews were conducted to assess their opinions and perceptions of the prototype videos. The interview guide (Multimedia Appendix 3) included both closed- and open-ended questions related to the content and format of each video: “Was the language easy to understand?”, “What do you think about the music?”, “How can we improve the videos?”, and “What did you think of the video?”

A thematic analysis approach was used to examine the interview and focus group data. The analyses were performed by an experienced researcher (CK) with formal training in qualitative methods. The qualitative data were carefully reviewed and rereviewed to immerse ourselves in the language and obtain a global sense of what patients expressed during the discussions. Throughout the reading, sentences and/or paragraphs were coded, and important sections of texts were highlighted and labeled. Hence, key labels were inductively identified in the unstructured data [17]. After sorting and combining the identified labels, a set of inductive themes and subthemes were defined and justified with verbatim quotes [18]. Table 1 illustrates examples from the coding process in each phase.

This study was approved by the institutional review board of the Cedars-Sinai Medical Center under the protocol number Pro55548. Patients were initially approached by their treating physician, who explained the study’s purpose and asked for their permission to be approached by a member of the research team. Information sheets were provided, and verbal consent was obtained from all participants before the focus groups and interviews. Participants were reminded of their right to pass on answering any question or discontinuing the interviews or focus groups at any moment. Participants received a US $100 Amazon gift card at the beginning of the focus groups or interviews.

A total of 17 patients with IBD were included in the focus groups (n=11) and one-on-one interviews (n=6) during the inspiration phase. The demographics and clinical characteristics of the patients are shown in Table 2. Although most patients in the focus groups were highly educated and with high digital literacy levels, we purposefully sought to increase diversity in these aspects in the individual interviews (Table 2). The focus groups lasted 2 hours, and interviews lasted between 15 mins and 1 hour. Several key themes were identified, and thematic saturation was achieved after 2 focus groups and 3 interviews.

In the ideation phase, we interpreted the data obtained in the inspiration phase to blueprint the content of the 5 educational videos. The following 5 topics emerged: (1) IBD treatments’ risks and benefits, (2) how to be a self-advocate, (3) how to stay healthy with IBD, (4) how to cope with IBD, and (5) educating families, friends, and colleagues about experiences of patients with IBD. Figure 1 shows how the themes and subthemes identified in phase 1 mapped to each video topic.

On the basis of these findings, 5 video scripts and character prototypes were developed, which were reviewed by 12 patients with IBD during 2 focus groups (Table 2). Overall, participants were satisfied with the 5 video scripts’ content and expressed that they aligned well with their needs and experiences. However, some improvements were suggested that helped to further align the videos with patients’ needs and expectations. For example, participants expressed the need to introduce biologics in a “less scary way,” as “some people are scared from biologics” and to highlight that “biologics are the most effective treatment” for those with IBD. They also found it important to emphasize that patients with IBD should do their own research on the web, discuss their concerns with their provider, and be part of their treatment decision making. In addition, they insisted on reformulating specific parts of the scripts:

and changing the representation of a few characters:

We then developed 5 high-fidelity video prototypes that incorporated patients’ feedback.

In total, 10 patients with IBD (Table 2) were interviewed to obtain feedback on the high-fidelity video prototypes. We found that participants were generally satisfied with the videos (Multimedia Appendix 4). They reported that they were informative, easy to understand, accurate, and helpful and that they were aligned with their perspectives and expectations:

Multimedia Appendix 4 shows specific feedback from patients on how to improve the content and format of each video. For example, participants reported the following:

Their feedback was taken into consideration and integrated into the final products (see Multimedia Appendix 5 for the final videos [19-23]).

In summary, we used design-thinking methodology to develop 5 IBD-related educational videos for dissemination through social media. This approach led to deep insights and understanding of the unmet educational needs of patients with IBD, which informed the creation of relevant and useful educational materials. This model may be adopted for developing other educational materials in IBD and beyond. Future research will test the impact of educational videos on (1) people’s ability to understand what patients with IBD think and feel and (2) patients’ confidence in self-managing their IBD. The videos will be freely available and will be broadly disseminated on social media using a targeted approach to reach patients with IBD and their family members and friends.