Yelak Biru, president and CEO of the International Myeloma Foundation talks digital, data and more.


Melissa: What are the biggest challenges charities face when it comes to the current digital landscape?

Yelak: The International Myeloma Foundation (IMF) faces significant challenges in today’s rapidly evolving digital landscape, particularly when it comes to maintaining data privacy and security. With the increasing collection of sensitive patient data through platforms like the IMF’s Clinical Trials Matching Engine and the Immunotherapy Database, safeguarding this information is paramount. The global nature of the IMF's operations adds complexity, as it must comply with diverse regulations such as GDPR and HIPAA while simultaneously defending against evolving cybersecurity threats. Failure to invest in robust digital infrastructure could not only expose the organization to potential breaches but also undermine the trust that patients and stakeholders place in the IMF's ability to protect personal and medical information.

Additionally, the IMF’s ability to provide high-quality care and timely access to clinical trials is hindered by disparities in digital accessibility across its global patient base. Many patients, particularly those in underserved or rural areas, may lack the digital literacy or technological access necessary to fully utilize the organization's digital platforms. Ensuring that patients of all backgrounds can engage with critical resources such as clinical trials and digital health tools is a major challenge. The IMF must address this issue through targeted digital literacy initiatives and provide alternative solutions for patients who may be excluded from the benefits of digital health tools.

Moreover, with the increasing volume of data being collected from various sources, the IMF faces the challenge of turning this data into actionable insights to improve patient outcomes. Leveraging big data for personalized care requires advanced technologies like AI and machine learning to analyze patterns and optimize treatment options for individuals.

However, managing, analyzing, and utilizing such vast amounts of data, while maintaining privacy and security, is no small feat. By overcoming these challenges, the IMF can ensure that it continues to serve as a leader in myeloma research, offering personalized care, improving clinical trial participation, and collaborating strategically with global stakeholders to make real-world impacts for patients.

Melissa: A lot of charities have limited budgets, how can they use data effectively within those budgets?

Yelak: With limited budgets, the International Myeloma Foundation (IMF) can effectively leverage data by focusing on key initiatives that align with our strategic goals and by forming partnerships with global tech and consulting companies. One of the most cost-effective strategies we’ve employed is collaborating with firms such as ZS Associates, LatentView Analytics, and Amazon Web Services (AWS), which provide specialized expertise in data analytics, machine learning, and cloud computing. For example, our partnership with ZS and AWS resulted in the rollout of Myelo, a generative AI-enabled chatbot designed to offer real-time support and personalized guidance to myeloma patients. This technology-driven solution allows us to provide high-quality care and timely access to information without significantly increasing our operational costs. Additionally, these partnerships have been instrumental in supporting the development of our Immunotherapy Database, which plays a pivotal role in mission-based partnerships and research collaborations that could ultimately lead to additional funding opportunities.

To use data effectively, we must also focus on initiatives that support our core objectives. By prioritizing areas like timely diagnoses, high-quality care, and timely access to new treatments and clinical trials, we can direct resources to projects that have the greatest impact on patient outcomes. Our Immunotherapy Database is a prime example of this, as it enables us to collect valuable real-world data that informs research and clinical guidelines. This data can also be leveraged in partnerships with industry leaders, which not only advances the mission of the IMF but could potentially attract funding from organizations
interested in supporting research that directly benefits patients.

Finally, for the IMF to fully integrate data into its operations, we must streamline data collection and management processes. While we have made significant strides in incorporating data-driven initiatives, there’s still much work to be done to make data a core part of our organizational DNA. Investing in efficient data management systems and training our team to adopt a data-driven culture will be crucial in reducing costs while improving data quality. By creating a culture where data is seamlessly integrated into decision-making, we can continue to optimize our operations, improve patient support, and ultimately, achieve our mission more efficiently, even with limited financial resources.

Melissa: How can the use of data drive decision-making within organizations?

Yelak: Many nonprofits struggle to effectively utilize data for decision-making, despite their significant role in the economy. To bridge this gap, nonprofits can benefit from data-driven decision-making in several ways. It improves program effectiveness by measuring success and identifying areas for enhancement, optimizes resource allocation by analyzing program costs and fundraising efforts, and increases accountability and transparency with stakeholders. Data analysis also strengthens donor engagement by revealing demographics and giving patterns and helps design more relevant programs by understanding the target population's needs. It is not easy being able to balance the benefits with the start-up cost of data-driven strategy development and program initiation as most look at these avenues as if they are not an investment in the overall mission of an organization.

Melissa: And there is a lack of training within the sector when it comes to learning about data, where can organizations start when it comes to upskilling staff?

Yelak: A prime example of addressing the data training gap is the IMF's deployment of Myelo, the AI-powered chatbot, on myeloma.org. This project involved a strategic partnership with AWS, leveraging their "Data Driven Everything" process. Through this collaboration, the IMF and its partners received valuable training on various AWS cloud-based tools. This enhanced the team's ability to not only deploy the Myelo platform but also empowered them to utilize cloud-based AI tools effectively. This collaborative approach highlights the importance of partnerships with external providers who possess not only technological expertise but also training capabilities.

To effectively upskill staff in data literacy, organizations should begin by conducting a thorough needs assessment to identify skill gaps and prioritize training in areas critical to achieving their goals. This allows for the development of customized internal training programs tailored to specific organizational needs, leveraging internal expertise by encouraging staff with advanced data skills to share their knowledge. To foster continuous learning, organizations can offer workshops, webinars, and ongoing opportunities for development. External training and certifications from reputable providers, such as universities and online learning platforms, can further enhance staff expertise, while industry-recognized certifications in data analysis and related fields help validate their skills.

Additionally, organizations should take advantage of online resources and self-paced learning platforms like Coursera or DataCamp, allowing staff to learn at their own pace. Mentoring and coaching programs can facilitate knowledge-sharing by pairing experienced staff with less-experienced colleagues, fostering a collaborative learning environment.
In addition to upskilling staff, nonprofits like the International Myeloma Foundation (IMF) must pay close attention to the needs of the patient population they serve, particularly when it comes to addressing disparities in access to care and technology. The average age of myeloma patients is in the late 60s, a demographic that often faces barriers to utilizing digital tools and accessing data-driven resources. Compounding this challenge is the fact that African Americans are twice as likely to be diagnosed with myeloma, and up to 70% of patients are diagnosed and treated within underserved communities. Socioeconomic inequity further exacerbates these issues, as many individuals in these groups lack reliable access to high-speed internet, the necessary devices, or the digital literacy required to navigate healthcare resources effectively.

For the IMF, addressing these disparities is crucial. Efforts to upskill staff and use data effectively must be aligned with the goal of improving access and support for these underserved populations. This means developing user-friendly digital tools, offering alternative ways for patients to access information and care, and investing in outreach programs that bridge the digital divide. By prioritizing the needs of the most vulnerable patients, the IMF can ensure that its data initiatives not only advance research and care but also promote equity and inclusivity in healthcare delivery.

Melissa: Do you have a final takeaway for charities about the use of data? A quick tip or something they can work on immediately?

Yelak: Large organizations such as Amazon, Netflix, P&G use data to personalize engagement and product for their consumers. It is not easy but doable. Mission-driven organizations will struggle to get started as allocating money for systems, infrastructure, and processes that accelerate the mission are seen as overhead or money not going towards fulfilment of the mission. Partner. Tell your impact stories. Start small. Develop confidence. Show impact!

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