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Sickle Cell Disease








  
  
    

  
      





HHS Office of the CTO and the Office of the Assistant Secretary for Health are bringing leaders and people together to accelerate the identification and implementation of innovative solutions to increase the quality of life for patients living with SCD.

Table of Contents

Our Engagement Plan
	Customer Experience Focus
	Convening of Stakeholders
	Data and Prototyping
	Awards
	Blog Posts and Ways to Learn MoreAbout 100,000 Americans currently live with Sickle Cell Disease (SCD), the most common inherited blood disorder. This disease is costly; expenditures for patients with SCD are six times higher than non-SCD patients on Medicaid and 11 times higher than non-SCD patients with private insurance. African Americans are disproportionately affected by SCD, and all SCD patients experience challenges with access, quality, and affordability of care. At doctors' offices, patients may face accusations that they are "drug seeking," experience extended emergency department wait times, and have difficultly filling prescriptions. African American SCD patients may also encounter racial discrimination when seeking treatment for acute pain crises.

Our Engagement Plan

The Office of the CTO and the Office of the Assistant Secretary for Health (OASH) are addressing this issue head-on. By leveraging HHS institutional knowledge and expertise, we are bringing patients and key stakeholders together to accelerate the identification and implementation of innovative solutions to increase the quality of life for patients living with SCD. Once defined, these solutions will raise awareness to and better address the challenges of ER visits for SCD patients and help ease their transition of care from pediatric to adult.

This new SCD project is part of the Health+ initiative, which is an ongoing series of human-centered design, discovery, and prototyping cycles focused on specific, high-impact health needs. The goal of Health+ is to use design and technology to uncover many opportunities to explore new solutions around critical health and wellness issues affecting large segments of the population with SCD.

Customer Experience Focus

Applying human-centered design at the center of our work, we engage with both patients and patient advocates across a variety of backgrounds and experiences in order to find common themes in supporting those with SCD. After conducting interviews with a diverse group of individuals, we  developed a picture of patient care journey which can be viewed in the following PDFs:

Executive Summary*
	Opportunity Area: SCD care is difficult to access*
	Opportunity Area: ER is a last resort for patients (Journey Map)*
	Opportunity Area: People with SCD struggle with transition to adulthood (Journey Map)*
	Opportunity Area: "Trial and Error": Patients bear the burden of individualizing their care plan*
	Opportunity Area: Patients plan their lives around unpredictability of SCD*
	Opportunity Area: SCD care requires complex support networks*
	Archetypes*
	Appendix: Research Approach + References** This content is in the process of Section 508 review. If you need immediate assistance accessing this content, please submit a request to idealab@hhs.gov. Content will be updated pending the outcome of the Section 508 review.

Convening of Stakeholders

On June 24-25, 2020 we held the virtual webinar and *Roundtable on Leveraging Data to Address Sickle Cell Disease.*The Office of the CTO co-hosted the event with the nonprofit Center for Open Data Enterprise (CODE). Together, we convened patients, patient advocates, physicians, providers, academia, payers, civil society, and state, local, and federal government. An output of this discussion is a report outlining recommendations and areas of focus for the next phase of rapid prototyping to drive health outcomes. Read the Key Takeaways Report here.

Data and Prototyping

Building off the insights from human-centered design and stakeholder engagement, we will gather subject matter experts, policy makers, patients, and technologists for an SCD healthathon. We are partnering with Howard University’s 1867 Health Innovations Project to host the event. The healthathon will use currently available data with the goal of improving health outcomes. Participants will receive guidance and information to build their own prototypes that address the challenges identified from the roundtable. Product teams will be encouraged to create technology solutions that focus on improving the transition of care for patients with SCD and address the pain points of ER visits. These prototypes will help validate and de-risk future solution development. With a roadmap in hand, we will be able to fulfill the vision and improve the quality of life for people affected by SCD.

Awards

We conducted a Healthathon on September 25, 2020 to identify innovative sickle cell solutions. We presented three awards as a part of the Healthathon Finale event, recognizing the most promising entries across three categories: improving continuity of care for patients transitioning from pediatric to adult care, improving the experience in the emergency department, and assessing care and treatment options and improving sustainable treatment. Read our blog to learn more.

Blog Posts and Ways to Learn More

Announcing the September Health+ SCD Healthathon

Advancing Health Equity through Data and IT: Sickle Cell Disease*

Coming Together to Improve Quality of Life for Patients with Sickle Cell Disease

FedScoop: Leveraging Data to Address Sickle Cell Disease

Webinar: Leveraging Data to Address Sickle Cell Disease

* This content is in the process of Section 508 review. If you need immediate assistance accessing this content, please submit a request to idealab@hhs.gov. Content will be updated pending the outcome of the Section 508 review.

                    
  


Content created by Assistant Secretary for Health (ASH) Content last reviewed November 9, 2020Back to top
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