Utilizing Crowdsourcing via Hackathon to Address Access to Cancer Medicine Across Borders: Lessons Learned

The advances in understanding cancer biology and the development of multiple therapeutic agents present major challenges in disseminating this knowledge to clinicians, creating gaps between what we know and real-world practice. It was reported in 2011 that translating the evidence into practice may take up to 17 years.[1] Although nowadays the knowledge may reach the intended audience faster, the implementation into practice is hindered by many factors, including difficulty in accessing care and the lack of resources.These challenges differ from one practice setting to another. For this reason, feedback from front-line individuals in a variety of settings is essential to determining existing challenges to individual practices. Crowdsourcing is a form of innovative outsourcing methods to tap into the wisdom, knowledge, and experience of the large number of individuals interested in the subject to solve a problem, help make a decision, or codesign a new product or process.[2,3]Although started by tech companies, the first report of a hackathon in healthcare was reported in 2012 when 34 engineers, students, nurses, and educators shared their skills and interests during a 28-hour event to help create community solutions for pressing problems in healthcare.[4] Hackathons have been used to address various medical topics, such as diagnosis, surveillance, nutrition, public health and environment, education, genetics, psychology, and general medicine, rare diseases, research, and education.[5] This crowdsourcing approach increased significantly in the medical field during COVID-19 to encourage networking and facilitate collaborations among various stakeholders to support the health sectors facing the pandemic.[6–9]Crowdsourcing has been used in cancer to address various issues such as diagnosis, consultation, and research. Different approaches were used to collect data, such as web‐based platforms, paper‐and‐pen data collection, or specific commercial software. Hackathons have been used lately as a tool to address cancer-related issues.[10–12]Our team is dedicated to enhancing access to cancer medicine at a global level. Wanting to gather insights from a broad community of stakeholders, we opted to leverage an online platform to conduct a crowdsourcing event. Within3, as a secure and compliant platform, purpose-built for engaging with and gathering insights from the healthcare community, was selected to partner in this initiative.This article aims to describe the steps of the process and provide tips and recommendations to design effective crowdsourcing initiatives. The details of the findings of the actual crowdsourcing are not discussed.We convened a panel of distinguished international experts to identify key stakeholders and pertinent issues to cover during the crowdsourcing process. This research was exempt from ethical committee review. A crowdsourcing (hackathon) activity was conducted between June 8 and July 8, 2022, through a virtual platform (Within3, Lakewood, OH, USA). The platform was divided into four rooms, each moderated by one expert posing a series of questions related to the following themes: access to affordable quality medicines; reliable, verifiable, and sustainable supply chain; guidelines and the rational use of medicines; and measuring and validating quality standards.Clear objectives are critical and will drive the selection of questions, stakeholders, and the mechanism for gathering insights. Our goal was to gather information from front-line oncology experts about the status of access to cancer medicine in different countries, challenges encountered, and suggested solutions. We wanted to do that over an extended period of time to allow better engagement in an interactive format.To achieve the objectives of crowdsourcing, developing appropriate questions to post to participants is essential. Our questions were formulated in collaboration with world-renowned experts in the field through extensive roundtable discussion. The four final questions addressed different themes and had multiple sub-questions that were developed by the team to help participants cover different aspects of the question topic.Equally essential to quality contributions is engaging stakeholders with diverse backgrounds and expertise. For our project, we identified oncologists, oncology pharmacists, decision makers, and others interested in access to cancer medicine as stakeholders. Invitations with a link to “opt-in” to the hackathon were distributed through multiple channels, including announcements at the American Society of Clinical Oncology (ASCO) annual meeting and on social media to attract experts with diverse backgrounds. Interested participants were able to register on the platform before the launch of the event.The platform should offer a secure, compliant environment for scientific exchange. It should be easy to use and facilitate interaction among the participants. Within3 meets all the criteria and was selected for our project. Once registered to the platform, individuals can participate in a structured discussion around predetermined topics at their convenience. Unlike a standard survey, participants not only answer questions, but engage in a moderated discussion. Each of the four questions was led by one moderator, with key stakeholders and fellow session members. Because this session was open for an entire month, participants were able to carefully consider their responses and take their time answering all the questions. Similarly, the moderators were able to dig deeper into topics and issues of interest via a two-way dialogue.Titled “Real-world insights to drive improved cancer care,” the moderators engaged nearly 30 oncology experts in a discussion around 22 questions. Participants hailed from North America, Asia, South Africa, and Latin America. Prospective participants could link to the URL to request an invitation to register to the Within3 platform and contribute to the session. Once registered, participants were able to answer a variety of questions and interact with the session moderators if follow-up questions and/or requests for elaboration were posed. Active session moderation by authors DP, DK, CC, and ARJ resulted in high engagement by participants.On the first day of the event, those who preregistered were given access to the platform and new participants were allowed to join in during the 1-month crowdsourcing period.Moderators reviewed responses to identify emerging themes and the Within3 team provided a summary of the comments and participant interactions with each item.Although success in a crowdsourcing effort is often tied to the number of respondents, in this scenario, we must consider the quality of the insights provided. The asynchronous, overtime format offered by the Within3 platform and high level of engagement by the session moderators allowed the team to not only get answers, but also, to glean true insights, which can be used to benefit different locations globally There are other unmeasured outcomes from the impact of such an exercise on energizing and connecting individuals interested in addressing these issues.[13]Between June 8 and July 8, 2022, 78 participants from 33 countries joined the platform. Participants responded to questions by reporting local/regional experiences and suggested solutions. The moderators encouraged participation by asking to follow up questions on the main questions and encouraged interactions among participants. Participants were able to comment on others’ posts or like a specific comment. The contributions revealed the disparities in access to medicines and highlighted the need for cooperation across borders and among healthcare systems and stakeholder organizations and emphasized the need to improve communications, education, and accurate data generation and experience sharing. Questions that generated the most responses related to access to quality essential medicines (n = 25) and the use of treatment guidelines based on essential cancer medicines (n = 22). Solutions that generated the most “likes” related to actions that can be taken to make medicines more affordable and accessible and actions to engage diverse audiences in efforts to improve access to medicines. The importance of creating practical and relevant guidelines was clearly highlighted. Moderators then summarized the findings and generated summary reports with the support of the platform staff.The experience and findings were shared with the ASCO Access to Medicine Summit held along with the ASCO 2023 Annual Meeting and contributed to the content of global collaborative manuscripts that were submitted for publication to share the collective experience with a wider audience.Although crowdsourcing was used in the past to address various aspects of cancer education, research, and clinical care, our study used hackathon specifically as a crowdsourcing approach to address access to medications, an issue that was not addressed via this approach. The methods used allowed interaction between experts across the globe at their own convenience over an extended period. This approach allowed participants to share their experience and knowledge and provide potential solutions/recommendations. However, there are a few challenges and limitations that we discuss in detail in the following text.Training the moderators on a new technology that was unfamiliar to them was an important first step and started before the launch of the event. This training is designed to familiarize moderators with the platform, thereby ensuring timely communication on their behalf. In addition, ongoing communication between the moderators and the Within3 platform administrators was essential in enhancing the participants’ engagement and maintaining momentum throughout the session.Because the Within3 platform requires registration by invitation only, all aspects of the invite and registration process had to be carefully considered. By offering a generic URL link, all opt-in notices came directly to the Within3 team, allowing efficient and seamless turn-around of the invitation to register to the platform and participate in the hackathon.Recruiting extremely busy healthcare professionals for this type of activity is not an easy task. Although we did get more than 75 registrants to the platform, fewer than 30 actively participated. When using technology, participants’ selection bias would be toward those who have access to the used technology and the participants may not represent the whole intended population. However, participants were encouraged to answer in a way reflecting the needs and practices in their country or region, not just their own practice.Our recommendation for the future is to limit the number of questions to 10 or fewer to avoid overwhelming individuals when they enter the session. Reserving additional questions as moderator prompts is a great way to dive deeper and stimulate a conversation. Similarly, the platform also allows for iterative sessions with content parsed out at a predetermined cadence over the course of several weeks.The question was on how to acknowledge participants who contributed clearly more than others or those who shared novel ideas that may have intellectual proprietary value. To address this, participants should know that this is an open forum and sharing ideas would make the idea public information. We did not encounter such an issue in this project, but we announced that the top three contributors would be recognized and would win free registration to the ASCO Annual Meeting next year. The platform provided the contribution statistics, and the candidates were identified and rewarded.Finally, because of the increased utilization of the hackathon approach to crowdsourcing, its potential benefits in healthcare, and the variations in the formats of hackathons, guidelines to standardize the design, implementation, and reporting of outcomes are needed.[14,15]A crowdsourced hackathon is an innovative and practical approach to gain insights from stakeholders of different professional and geographic backgrounds and practice settings. It creates an opportunity for interested individuals to participate in asynchronous ways in an easily accessible platform at their convenience over an extended period of time. Crowdsourcing can be used to address various oncology care challenges and help facilitate experience sharing across borders.We thank Ms Gloria Stone from Gloria Stone Connections Inc. for logistic support of the project.