On September 25, together with the US Department of Health and Human Services Office of the Chief Technology Officer (CTO) and Howard University’s 1867 Health Innovations Project and the Center for Sickle Cell Disease (SCD), we hosted the Health+ Sickle Cell Disease Healthathon finale to recognize the most innovative and promising solutions to challenges facing people living with SCD.
SCD is the most common inherited blood disorder in the world, currently affecting about 100,000 Americans. The Healthathon finale event comes at the end of a months-long process of research and multipart discussions around the experiences of people with SCD and their caretakers. The Healthathon aimed to produce new technical solutions that address SCD problem areas over a two-week-long challenge, bringing together individuals and teams from across industries and geographies.
Finale Event Recap
A series of speakers shared their experiences working on solutions and new understandings of SCD before awards were given.
Did you miss the Finale? Watch the full presentation below.
ADM Brett P. Giroir, M.D, the assistant secretary for health at the US Department of Health and Human Services shared the federal-level work charting a new global course for people living with SCD, with support ranging from the White House to the National Institutes of Health to global organizations like the World Health Organization.
It is a time of firsts and new prioritization for patients with SCD. The Centers for Disease Control recently expanded their SCD data collection program. This resulted in the first national report card for the care people on Medicaid/CHIP receive for SCD. A new supplement to the Annals of Emergency Medicine, which reaches nearly every emergency physician in the country, focuses on SCD education.
This unified effort is among the first to channel so many resources to normalize the lives of Americans living with SCD, with a goal significantly improving their experiences within 10 years.
Watch ADM Giroir’s presentation starting at 5:57.
Kwaku Ohene-Frempong, MD, the president of the Sickle Cell Foundation of Ghana, spoke about his pioneering work using neonatal screening technology to support early SCD diagnosis in Sub-Saharan Africa. After his first child was born with SCD, Dr. Ohene-Frempong went to Ghana to develop the policy and technical plan to make newborn screening a national program. To ensure families, most of which lacked phone or internet access, could be properly notified of a positive or negative result, Dr. Ohene-Frempong’s program relied on extensive data collection to physically locate them. In 2017, they launched a mobile app guarding against data entry errors and streamlining the collection process; something that used to take weeks now took days.
His work continues with developing apps for patient management and to guide doctors through hydroxyurea treatment dosing and toxicity monitoring.
Watch Dr. Ohene-Frempong’s presentation starting at 22:49.
Jonathan Jackson is the co-founder of Dimagi, a partner in developing digital solutions for the Sickle Cell Foundation of Ghana. He spoke on bridging the gap in SCD care pathways, not just by technology but also by the people and providers. User-centered design allowed Dimagi to figure out what care providers needed to be effective, then build a comprehensive case management system that could function offline, guard privacy, center on patients, and address evolving use cases. Currently the app is a tool for education, conversation among the sickle cell community, analytics, and the synchronization of data in a low connectivity environment. Ultimately, it aims to facilitate an end-to-end process of getting care, from newborn screenings to lifetime treatment access.
Watch Jackson’s presentation starting at 41:43.
James G. Taylor. VI, MD, the director for the Center for Sickle Cell Disease at Howard University, shared a brief history of SCD research. Efforts at Howard led to advances in transfusion medicine, newborn screening, and SCD pulmonary hypertension treatment. And Howard is still building on a legacy of pioneering both scientific and social legislative efforts to focus on SCD.
Watch Dr. Taylor’s presentation starting at 48:51.
Sabrina Fonseca, Principal Design Strategist at Coforma (formerly &Partners), shared the themes gleaned from months of human-centered design research that laid the foundation for Healthathon solutions. Each solution aimed to address one or more of these problem areas. Across interviews, roundtable discussions, and workshops, they found the greatest challenges to people living with SCD to be:
Transitioning from pediatric to adult care. As children with SCD become their own caregivers in adulthood, they need support navigating primary care, making healthcare and treatment decisions, paying for care, managing work and school absences, and other decisions that used to be taken care of by someone else. The transition period from pediatric to adult care generally happens between the ages of 18 to 21, when many patients want to be most independent and when SCD complications can become increasingly serious.
Navigating emergency care. Patients with SCD rely on the ER as part of their care, but the experience is often so poor that many avoid going until they can’t manage their crisis at home anymore. ER protocols for SCD vary or aren’t in place at all, and ER clinicians are often unfamiliar with SCD and can perpetuate racial biases and drug-seeking stigma.
Improving sustainable treatment. Identifying reliable pathways to care is perhaps the biggest challenge facing the sickle cell community. Barriers include lack of treatment options, particularly for adults; lack of education and access to information for patients and providers; lack of specialists in SCD who can develop individualized care plans with patients; and no incentives to providers to coordinate the care and education needed for treatment development and compliance.
Watch Sabrina Fonseca’s presentation starting at 1:08:08.
Awards and Recognition
Michael Crawford, MBA, MHL, the Associate Dean for Strategy, Outreach, and Innovation at Howard University College of Medicine, announced the contest winners for the three award categories.
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 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 awaiting treatment during pain crises. It can also connect users; people with SCD can interact, educate each other, and build community.
Promising Concept
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 deep learning classification systems were used to develop a 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.
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.
Next Steps for Winning Solutions
Winners gain opportunities to participate in programs and promotions sponsored by Howard University, AARP, Healthbox, and other partner organizations. These opportunities include innovation and clinical validation, membership in mentorship programs, policy solution whitepaper publication, marketing spotlights, and more.
About Health+
The healthcare space innovates slowly and is failing to meet the ever-increasing need for improved service delivery. Hardworking clinicians, policy makers, providers, and government personnel often work in silos, engaging patients and families separately and neglecting their cross-disciplinary perspectives in the collective effort to improve outcomes for patients and their families. The healthcare space could benefit from introducing Human-Centered Design (HCD) approaches to help professionals in the space solve complex problems through thoughtful interactions and research methodologies. With this challenge in mind, Coforma developed Health+ (“health plus”): a program that utilizes HCD research to better understand the high-impact health issue placed in focus.
Each Health+ engagement is part of an ongoing series of research and healthathon cycles, with the first engagement being sponsored by the Department of Health and Human Services (HHS) Office of the Chief Technology Officer (CTO). Health+ constructs a more supportive infrastructure around the most medically vulnerable populations in the US through private-public collaboration, cross-industry dialogue and collaboration, and creative problem solving with the potential for policy, code, and systems solutions.