How data for the common good fosters hope and improves outcomes

While business leaders often think about the impact of data on their bottom line, there is another benefit that shapes how businesses interact with their customers and partners: data for good. This notion is not new, but it is becoming increasingly important for organizations that want to make a positive impact on the world.

What does “Data for the Common Good” mean?

Initially, one could argue that all data is for the common good. When used effectively, it improves organizational health, creates a highly engaged customer community, and creates a more efficient work environment. But organizations that want to use data to promote the common good need a strategic roadmap to ensure it all comes to fruition. It starts by asking: what, how and where? When these questions are answered, data becomes a secret superpower, capable of creating hope in seemingly hopeless situations.

The International Myeloma Foundation (IMF) is on a mission to unify data to create a powerful education program for patients and their families who have been diagnosed or relapsed with myeloma. In partnership with LatentView Analytics, IMF reduces the time it takes to hope, that is, the period from diagnosis or relapse to the patient’s realization that they can living with myeloma.

Philanthropy-focused nonprofits and foundations, curious about how their data could create positive impact, can ask three essential questions to learn how they can use their data to impact the common good: what, how and where.

Harnessing data and overcoming challenges: defining the what.

Organizations such as the IMF need to identify what they are trying to accomplish. For nonprofits that may not be as data savvy, understanding the goal of the effort is crucial to creating a strategic plan with a database.

The main question the IMF is trying to answer is: what should we do to reduce the time to hope for our patients? Their ultimate goal is to be able to accurately measure and reduce this time in a repeatable and scalable way.

As the MFI embarked on this data journey, it knew its patients and their families needed personalized and educational information that was easily accessible upon diagnosis. With such speed, patients can immediately use educational information to make informed healthcare decisions. Data shows that more educated patients have more positive outcomes and are better able to advocate for themselves when using a shared decision-making model.

Nonprofits pursuing this same goal must remember that their “what” is unique to the community they are building. Unlike influencing a base of paying customers, nonprofits’ efforts should be focused on how they can be the best advocates for their base. Ranking the community’s most immediate needs can help leaders determine where to focus their initiatives.

Starting with a concrete, patient-centered goal made it easy to chart the path to get there. Organizations that are unclear about the most important needs in their communities have several low-barrier-of-entry solutions for collecting this information. A brief email survey or social media poll of a select audience can help project managers focus on their goal.

Understand how

With speed, accuracy, and personalization in mind, the next question to ask is: how? The International Myeloma Foundation has chosen to create a knowledge platform that brings together data to serve as a personalized home base for each patient.

Powered by AI and machine learning, this knowledge platform allows patients to find the information they need to make an informed medical decision, without adding undue stress. Patients can ask questions such as what they should read and watch, questions they should ask their doctor, and several treatment options they can consider.

The platform shows patients a hypothetical six-month journey based on their unique data and acts as a digital touchpoint to help them navigate their journey in a more informed way. The IMF has found that patients who follow this pathway may have better outcomes over time.

Similarly, other humanitarian organizations use aggregated data to improve social outcomes. The United Nations, through its Global Pulse initiative, uses real-time data from different sources to estimate the likelihood of different humanitarian scenarios and help localities better prepare to serve their communities.

As organizations consider creating similar digital interfaces, it is important to consider that every tool, especially in healthcare and life sciences, must respect patient privacy and rights.

Those unsure of where to start should rely on external partners and guidance for help with data analysis, AI/ML modeling, software/app development, and design .

Last but not least… Where?

Finally, once the organization has a clear objective and an execution plan, the final critical step is to understand where the data insights will manifest and how many variations of the data should be made available. Forward-looking platforms that are easy to use and interact with are essential for success. For IMF, its comprehensive dashboard is designed to help patients access their information through voice assistance, chatbots, and HIPAA-compliant QR codes.

In developing its dashboard, the IMF recognized that not all patients have the same physical capabilities. Voice assistance allows patients to get the information they need verbally, while chatbots give clear answers to specific patient questions and provide recommendations based on question history or similar questions. QR codes are used to concisely communicate information to families when necessary. Where an organization houses its data will depend on the needs of the community it serves.

When discussing where data insights should be housed, organizations should think about meeting their communities where they are. Do they visit your website regularly? Do they regularly meet with employees in person? Wherever the information is, make it intuitive.

Ultimately, using data for greater good is a journey that requires a strategic roadmap based on three questions: what, how and where. The International Myeloma Foundation serves as a model for using data for the greater good.

Organizations interested in embarking on their own “data for good” journey should recognize that the IMF’s Time to Hope project was a multi-year effort that required resources and collaboration from across the organization. foundation, including patients, healthcare providers, community and data partners. Together, they have created a unified data platform and ultimate patient resource that educates patients and their families, inspires hope, and improves outcomes.