DataKind is completing a sprint to support the U.S. Food and Drug Administration (FDA) through the Census Open Innovation Lab’s The Opportunity Project (TOP). Learn more about TOP by visiting their website: https://opportunity.census.gov/. We are so excited you’ve decided to join us in this endeavor!

The focus of our problem statement is on empowering patients through knowledge of health data privacy and security - strengthening patients' confidence in data security so that they're willing to share their data to inform decision making.

New modes of testing and care delivery rely in part on patients to input and share health data to provide a complete picture to those using population-level data. Yet patients may have questions and concerns regarding the safety, security, and utility of sharing their health information. We challenge sprint teams to create tools and digital resources that increase clarity, transparency, and autonomy regarding health privacy and security in order to empower patients to understand, own, use, and voluntarily share diagnostic data with greater confidence.

Patient education and patient privacy are important pillars of healthcare delivery, and they are considered to be two key responsibilities of the healthcare provider. Taking time to counsel patients helps build trust and has been shown to be an important driver of behavior change. Empowering patients to realize they are in control of their health data likewise helps strengthen that trust, especially when it comes to sharing personal health data. The COVID-19 pandemic served as a powerful reminder that effective patient education and empowerment can fall outside of the traditional doctor-patient relationship, and that achieving these goals can be especially challenging in uncertain times.

A patient’s experience with the health system can impact their willingness to become an active participant not only in their own health, but also in the health of their community. With this in mind, education and simple tools for privacy management that prioritize patient autonomy and informed consent throughout the patient’s healthcare journey are needed. With the ability to understand and easily access, utilize, and share relevant data with appropriate privacy criteria, patients can become active players in the effective response to public health challenges.

The FDA would like us to develop a product that will empower consumers (patients) to easily access, utilize, and share relevant data with appropriate privacy criteria for the coordination of an effective response to public health challenges. We will focus on the data exploration, marching, and storytelling part of the solution.

Patients/consumers; health and patient advocacy organizations; healthcare providers; consumer protection organizations.

You’ll see that concept development is part of the sprint plan below, so we haven’t finalized our plan yet. We’re happy to have you onboard to help with this, as we get started with data discovery and continue user research. Still, here’s what we are thinking so far:

Project idea #1: We’re wondering if it might work to develop language models that take privacy terms (long, full of “legalize,” and difficult for the consumer to understand) as an input and convert the lengthy terms into a clear summary for the consumers.

Project idea #2: Additionally, we are thinking about exploring existing datasets to find data we can use to conduct comparative analysis for users to securely share their data and get real-time feedback on what action words they can use with a doctor to get treatment for their areas of greatest risk, from analysis of securing combined public and private data. For example, someone might report certain symptoms into an app, and it would tell them how rare or common the symptoms are for similar people and what they might want to talk to their doctor about, based on their health context and individual health situation.

In either case, we want to connect social determinants of health at a local level to individual understanding of health data in order to build a solution that supports the most vulnerable.

It’s possible that these ideas will come together into one concept design, but right now, we are still exploring, and we need to better understand the data available before finalizing our concept. That’s why we are excited you are onboard to dive into the data and possibilities!

Overall, our goal is that DataKind has conducted data discovery, proposed a concept solution that aligns individual understanding of health data with social determinants of health at a local level, and has created an interface for engaging safely with private data in addition to public data to build understanding of individual health and health contexts.