IMPACT Trial Finders
Background
In collaboration with Weill Cornell Medicine's IMPACT project, we developed a digital platform specifically designed for underserved communities. This initiative aims to enhance access to cancer clinical trials for women in these groups. Recognizing the challenges faced due to technological and educational barriers in healthcare, our approach involved creating a platform that is linguistically and culturally tailored. This would help bridge the access gap and facilitate the availability of educational resources for clinical trials.
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Our team engaged in a thorough process of competitive analysis, user interviews, and iterative design and development. Despite time constraints, we successfully created a fully operational digital tool for finding cancer clinical trials. We also developed a Notion site to serve as a resource hub for medical providers. Our work yielded valuable insights into the existing technological barriers in patient care, and narrowed the gap between patients and the care they deserve.
Timeline
January - December 2023,
12 months
Role
Product design, research, UI/UX design
Project Type
Work project, academic project
Team
Project Summary
This is a quick 2-min presentation by all members of our team, in which we briefly summarized different stages of our process, and a walk-through of our final deliverables. This video will provide you with a sneak peek of what our project looks like!
Background
Research has extensively explored ways to improve healthcare access for women from underserved communities. However, there's less focus on digital access and technology usage in this context. Despite technological advancements, such innovations haven't been widely integrated into healthcare, particularly in women's cancer clinical trials. A common misconception among patients is that clinical trials equate to receiving placebos rather than actual treatment, with many unaware of clinical trials being viable treatment options.
Image by storyset on Freepik
Image by storyset on Freepik
To address this, our goal was to design and develop culturally sensitive digital tools to raise awareness about cancer clinical trials and facilitate referrals from patients and their healthcare providers. Our iterative approach focused on creating accessible tools and web-based content. This content aimed to educate users on clinical trials as a treatment option and provide easy access to relevant trials based on specific diagnoses and treatment histories.
Research
Preparatory research
To prepare for the project, our team members first conducted literature reviews to gain an initial understanding of the existing disparities in cancer outcomes, lack of diversity in clinical trials, as well as the current state-of-the-art of digital resources for clinical trials and general health promotion. Then, the entire team completed a series of IRB CITI Certifications to gain qualifications to conduct focus group interviews. Lastly, as mentioned in the previous section, our team conducted an extensive competitor analysis on a total of eight clinical trial platforms.
Screenshots of competitor analysis
We also reworked the language of clinical trials into layman's terms. This included translating 30 available trials and creating a scalable template outlining best practices for translating titles, descriptions, experiment designs, and inclusion/exclusion criteria. In this stage, we learned to adapt to the process of individually immersing ourselves in each step, and collectively come together for reporting and discussion. We gradually built more connections between these preparatory research efforts and our project goal.
Challenges in promoting diversity
From preparatory research, we identified three main obstacles to increasing the participation of diverse populations in clinical trials:
1. Lack of access to trial-related resources,
2. Limited capabilities of existing clinical trial tools
3. Gaps in understanding individual benefits and research values of clinical trials: In underserved communities, individual patients considering participation in clinical trials commonly encounter difficulties in obtaining information in a way that resonates with their everyday comprehension of medical concepts.
Technical aspect of the problem
As our goal of this project is to build a digital tool for increasing diversity in clinical trial participants, we identified several technical challenges. One key aspect is the user interface research and design to cater to diverse populations.
In doing so, understanding how to adapt clinical trial/ cancer-related content to suit varying literacy levels is important. Another crucial area is the development of the digital tool. Building a suitable platform involves creating an infrastructure that is accessible across desktop and mobile devices while accommodating different levels of technical proficiency.
User interviews
Starting in June 2023, we began to conduct a set of user interviews in coordination with Weill Cornell Medicine to understand user behavior and their struggles using existing online resources to search for and understand cancer treatment and clinical trial information. The goal, dictated by project budget, was to conduct 12 user interviews, including 4 interviews with cancer patients/survivors, 4 interviews with caregivers, and 4 interviews with healthcare providers.
As of the time this report is written (November 20th, 2023), we were able to conduct a total of 11 interviews, including 4 interviews with cancer patients/survivors, 3 interviews with caregivers, and 4 interviews with healthcare providers. Our interviewees cover a range of demographics. Because our project’s focus is women's cancer, all interviewees are female, with 45% White, 18% African American, 27% Hispanic, and 9% Asian. Weill Cornell Medicine recruited all interview participants through online advertising of the study and internal referrals within the Weill Cornell Medicine and New York Presbyterian network.
Hispanic 27%
African
American 18%
Asian 9%
White 45%
Interviewee demographics
We performed the first round of qualitative coding and affinity diagrams in August based on the five interviews completed at the time. Subsequently, we performed the second and the third round of qualitative coding and affinity diagrams in October and November. The interviews yielded rich results that challenged our previous assumptions about the challenges that patients, caregivers, and providers face navigating online resources regarding cancer and clinical trial information as well as how our website can address their needs.
Synthesis process and affinity diagram
Key takeaways from patients
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There is a lack of mental health resources for cancer patients and survivors. Going through cancer treatment brings tremendous mental pressure onto the patient and their caregivers/immediate family members, but it is difficult to find effective online or in-person resources for counseling or therapy.
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There is much false, fraudulent, non-scientific information online regarding cancer treatment. For patients who come from an underprivileged background, it is difficult to discern the difference between trustworthy information and misinformation.
Patients and caregivers find their physicians to be the most reliable source of information. However, given the busy schedule and workload of their doctors, it is difficult to receive prompt answers to their questions. This is further exacerbated by the fact that many senior patients and patients from an underprivileged socio-economic background are not proficient users of electronic health records (EHR) systems, so their most familiar mode of communication remains analog (e.g. pen and paper, phone calls).
Key takeaways from caregivers
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Caregivers and patients regularly read survivor stories on social media such as Facebook support groups and Reddit. These stories boosted their confidence in their course of treatment and provided a sense of community for them. One quote from the July 21st interview with a caregiver says, “Seeing other people going through a similar situation gave us clarification and preliminary understanding of what we were going through… (Referring to survivor stories) most of what I read is valuable even if it's not the same condition.”
Video is a popular format among caregivers and patients. It makes it easier for them to understand and retain medical information, which in written formats can feel inaccessible and overwhelming.
There is a general lack of understanding and misconception around clinical trials. Patients and caregivers usually only consider clinical trials as a treatment option if they are recommended by their physician directly. In the July 27th interview, a patient states, “I’m not really sure what clinical trials fully mean. In my mind it’s like something that might not work, but you are trying to see if this works?” Another quote from the August 22nd interview says, “(Referring to clinical trials as a treatment option) it was not necessary. My parents just needed treatment.”
Key takeaways from providers
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Patients’ lack of proficiency in English creates a significant barrier for them to fully access the care they deserve and for physicians to deliver care. In the November 7th interview, a provider who works frequently with immigrant patients stated, “If patients don’t speak English, they will not use Epic at all.” At her hospital, they provide a short printed version of clinical trial information in various languages for patients who do not speak English and want to participate in a clinical trial, but the accuracy and the level of clarity of the information presented are worrisome.
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Some questions come up repeatedly when providers try to explain clinical trials to patients. They include the cost of participation, side effects of trial medication and their effects on their current treatment plan, the concept of randomization in clinical trials, etc. An accurate and comprehensive guide offered in multiple languages that can explain these common questions would be beneficial to patients, caregivers, and providers.
Design and Development
After gathering general insights from the interviews, we proceeded to discuss the intended features that should be incorporated into this platform. Utilizing Figma, we crafted wireframes and prototypes, and used Wix as our hosting platform for the website. We conducted 3 rounds of design iterations, establishing visual design systems and implementing an accessibility testing system. For development, we used a combination of Wix’s built-in website construction features and coding. In addition to the desktop version, we successfully completed the mobile version of the site. All of our design implementations are currently applied to our Wix site, with further details to be introduced in the later section.
Visual design system
Before working on the prototype, we first worked on the visual design systems for our platform. Since it is a website for Weill Cornell Medicine, we refer to its styling guidelines and added a few additional colors. We also experimented with different color-text combinations, as shown in the following.
Prototype
The result of our prototype design can be seen in figures here, and from the Figma file. There are four major components of this platform: a home page, a find trials page, 26 trial details pages, and an educational page. We also included several design explorations in the Figma file. All designs are now implemented on our Wix site.
Future Work
Continuous development guidelines
To populate educational content and empower the continuous, low-code design and development of the IMPACT eHealth tool, we developed a Notion site (not public) as the primary documentation. This all-in-1 resource hub provides documentation on content development, design references, and website development.
Future directions
One remaining question we have yet to resolve is determining the most effective and efficient ways for users to receive concise and accurate communications. To address this challenge, we have formulated two initial recommendations. Initially, we considered the development of a chatbot, providing users with a platform to pose specific questions. While a chatbot is relatively easy to implement, we have already created a demo on our Wix site; there is a concern about its potential inefficiency and the risk of duplicating efforts.
Flowchart of the chatbot we developed
An alternative solution we propose is the creation of a discussion forum, allowing users to pose questions directly to active website managers. Users would be required to verify their identity, and they would have the option to make their questions public, facilitating broader visibility for similar queries and encouraging user-to-user discussions. Although we have designed a prototype for the forum, accessible in the Figma file, time constraints within the project prevented us from implementing it.
Future directions for this project may involve further exploration of potential solutions to the aforementioned questions, aiming to implement the most optimal resolution.
Initial prototype of discussion forum