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Health+ Sickle Cell Disease

Coforma provided insights, stories, personas, journeys, and an innovative program to inform Health and Human Services’ overall goal of accelerating the identification and implementation of innovative solutions to increase the quality of life for patients living with Sickle Cell Disease (SCD).

Surfacing and Improving Lived Experiences

US Department of Health and Human Services
PISTIS, CODE, Ensemble, Howard University
Delivery Date:
September 30, 2020

Sickle Cell Disease is the most common inherited blood disorder in the world, currently affecting about 100,000 Americans.

SCD is the most common inherited blood disorder in the United States, disproportionately affecting African Americans. The Health and Human Services’ Office of the Chief Technology Officer sought to respond to a nationwide demand for population-level SCD surveillance data and other data to support better treatments and healthcare options for people with SCD. They needed a partner to conduct several levels of patient-centered research, extract cross-discipline insights by cutting across work silos, and create a platform to begin addressing the Sickle Cell community’s needs and concerns. Coforma’s Health+ program was a perfect fit for the challenge at hand.

Accessing Care | Health+ SCD

Through the Health+ module, we collaborated with HHS and other partners to drive innovation labs, facilitate workshops with patients and subject-matter experts, conduct user and Human-Centered Design (HCD) research, develop patient-driven service designs, coordinate validation roundtables, create a highly-functional HCD report, and deliver an event aimed at generating solutions to identified issues.

Coforma presented an HCD report of research findings, detailing journey maps, personas, archetypes, themes, and insights across interviews with the Sickle Cell community. The Health+ SCD engagement culminated with a Healthathon to innovate patient care solutions based on the research done by Coforma.

Personas and journey maps are so great at communicating these challenges. We need these types of powerful storytelling in government, using them in a creative way to spur innovation. I really see how this approach can lead to novel solutions. When we set the stage with inspiration and energy, we are more likely to get new results.
Captain David Wong, MD Medical Officer - Office of Minority Health, OASH

The Human-Centered Design Report

We listened to the Sickle Cell community’s lived experiences, then created an opportunity to address their greatest concerns.

We conducted user interviews, a human-centered design workshop, and a roundtable conversation with people living with Sickle Cell disease and those that care for them to surface the problems they faced in coordinating and receiving healthcare. By continually refining and validating the personas, archetypes, and key issues identified in the community, we honed in on six opportunity areas for improvement. Explore the report, below.

PDF download | 982 KB

Download the report

The Health+ Sickle Cell Disease HCD Report illustrates patient personas, archetypes, and journeys to better understand the lived experiences of patients. Opportunities and recommendations are presented to enable innovation that improves the lives of folks living with SCD.

Healthathon Solutions

Many individuals and teams participated in the Healthathon for Health+ Sickle-Cell Disease. Three awards were given to creative solutions to identified healthcare challenges.

Person on a computer with a whiteboard

The Most Promising Technology-Enabled Solution

This award recognizes the best technical solutions in the Healthathon. It was awarded to Drew Walker and Vaughan Coder for “SickleStrong Network: An Automated Texting Support Intervention to Connect Transitioning Adult SC Patients to Helpful Peers, Providers, and a Better ER Experience.”

Their code-based prototype created an accessible automated texting service that gives patients with SCD access to their provider team during ER admissions, reducing wait time and negative experiences while awaiting treatment during pain crises. It can also connect users; people with SCD can interact, educate each other, and build community.

Person with tech diagram behind them

The Most Promising Conceptual Solution

This award recognizes the most promising conceptual solutions in the Healthathon. It was awarded to Pushkar Aggarwal for “Risk Factors Analysis and Prediction of Mortality in Hospitalized Sickle Cell Disease Patients Using Machine Learning and Artificial Intelligence Deep Learning.”

Pushkar’s work identified risk factors that significantly impact the mortality in hospitalized SCD patients, and aimed to develop a model to predict the mortality risk in future patients. Several machine learning and artificial intelligence (ML/AI) deep learning classification systems were used to develop the predictive model using the risk factors and protective factors to quantify the mortality risk in hospitalized SCD patients based on data from the National Hospital Discharge Survey. Such a model would allow for hospital resources to be allocated proportionally to manage the mortality risk of each patient, which could lead to better care and a lower mortality rate in SCD patients.

Person adjusting sliding scales

The Most Promising, Research-Enabled Recommendation

This award recognizes the most promising research-enabled recommendation in the Healthathon. It was awarded to Bridges Pointe for “Continuity of Care and Policy in Transitioning for Patients with Sickle Cell Disease Search.” Bridges’ whitepaper set policy recommendations delineating protocols and procedures that would help patients with SCD transition from childhood to adulthood over a specific “transitional care period.” Additional interventions in this period may include community support and efforts to work with college and university health offices to better understand and interact with enrollees who live with SCD. In addition to improving their ability to navigate in healthcare economies, this policy aims to enhance health equity through considering social determinants of health.

Press & News

Collaboration is at the heart of Health+. Read about how we worked with the government and across work silos to generate patient-centered research and foster solutions to improve the experiences of people living with SCD.