Challenge overview
I decided to participate in the Merck Challenge from the HerHackathon 2022 and joined three data scientists. Our team, which we called Supernova, won the Merck Challenge.
Duration: 2 days, 06/2022
My role: UX/UI designer
Question: “How to ensure representation of trial participants in terms of diversity and inclusion?”
Responsibilities: Research, paper and digital wireframing, high-fidelity prototyping, accounting for accessibility, and iterating on designs.
Introduction
Clinical trials are an essential part of the process of developing new life-saving treatments. To ensure generalizability of the results of these studies, it is vital that participants are reflective of the entire population that may eventually use these treatments.
Several barriers have been identified that adversely affect participation rates among minority demographics. We divided the different barriers that individuals face into two groups.
The first aspect involves the barriers that impact a person’s willingness to participate in clinical trials. These include:
Belief systems (ie. religion)
Trust in doctors or trial programs
Risk of taking part in a trial - some populations may be more risk averse
Education (or lack of) regarding general health, vaccines, etc.
The second group of barriers are more related to participants’ ability to complete the trial once they are enrolled:
Access to healthcare providers (or lack of)
Logistics in getting to a clinic
Economic factors
Inability to leave work
Need to take care of children
Distance to drive to CT site
Age
Physical Disability
Mirroring this, we are similarly proposing a two-stage approach.
Proposal
Phase 1
The initial strategy we propose has the general objective of enlarging the pool of diverse individuals that are candidates for clinical trials.
We are proposing to address the barriers involving individuals’ general lack of awareness about clinical trials and lack of trust in the process by seeking out members of minority communities considered to be influential and tailoring the response to each community.
We propose performing community detection and network analysis on social media data. In the context of networks, a community is “a subset of nodes within the graph such that connections between the nodes are denser than connections with the rest of the network” (Radicchi 2004).
Within these communities, we can identify the nodes or the individuals with a high degree of centrality. In societies, these individuals can be considered the community leaders with some influence on the members of their respective communities.
Once the communities representing minority populations are identified, the influential members can be contacted and relationships cultivated with them. These ‘community influencers’ can be invited to participate in educational campaigns or workshops that aim to increase their knowledge about clinical trials in general, and more specific ones available. With a community-based approach, a tailored educational campaign can be developed that addresses the specific issues and barriers that its members are facing.
Phase 2
We have prepared a prototype of the Trial Match, a clinical trial companion app
Trial Match
Upon indicating interest in participating in a clinical trial, users can download this app and answer a questionnaire with basic inclusion criteria that can determine their eligibility. This removes the burden of physically attending a trial site for the user.
Link to Hi-Fi prototype
The Trial Match app as well as community influencers will play a large role in retaining participants in the trial.
The app’s features enable users to easily keep track of their progress and obtain assistance or reimbursement for trial-related expenses. Seeing a simply-laid out task with instructions removes barriers from basic participation. Further, having clear buttons to request assistance (such as booking transportation), reimbursement, or asking for help allow patients to quickly and easily address their concerns, further reducing chances of dropping out.
Link to Hi-Fi prototype
Next step
When influential community leaders educate and encourage others to participate, clinical trials will begin to be more impactful. The next important step would be to make sure participants feel that impact. The strategy and way clinical investigators think about the trial should rotate to a more community-centric view. When members feel ownership over the result, a sense of accountability is formed and therefore more reason for them to stay in the program even if it is not convenient at times.
Further, those identified above as central nodes, would continue to monitor and take in feedback from participants, acting as an intermediary between Merck and their trial’s patients. Their role is the following:
Leader to foster open dialogue and trust between clinical trial investigators and patients
Advisor to assist with any concerns regarding reimbursement
Liaison to provide positive feedback to participants so they can see the difference they are helping to create
Ongoing education initiatives should also be run throughout the clinical trial. Because certain illnesses manifest differently in different demographics, it is important for participants to understand their risk factors, possible symptoms, and how to respond if they see themselves or a friend/family member exhibiting these signs. It is also important to use these sessions and distribute newsletters to show appreciation for their participation. Updates on how the study is going and how it will benefit future patients encourages them to continue.
Conclusion
Ultimately, using a community-based participatory research approach benefits both patients and Merck. Patients can learn about their health and feel responsible for the outcomes of the clinical trial. Merck can gain a better understanding of how medications, vaccines, or other trials affect the total population with all of its diversity.
This will complement Merck’s mission of “aspiring to improve the health and wellness of people and animals worldwide, and to expand access to our medicines and vaccines.”