Skip to main content


U.S. flag
      An official website of the United States government
              Here’s how you know
        Here’s how you knowDot gov**Official websites use .gov**
                 A **.gov** website belongs to an official government organization in the United States.
                  HTTPS**Secure .gov websites use HTTPS**
                 A **lock** (A locked padlock) or **https://** means you’ve safely connected to the .gov website. Share sensitive information only on official, secure websites. 
  Menu Close
          HHS Search (ash)
    Search
        








  
  
    

  
      

                                      About HHS
    
                        
                              
      
      
      Programs & Services
    
                        
                              
      
      
      Grants & Contracts
    
                        
                              
      
      
      Laws & Regulations                  
Office of the Assistant Secretary for Health
  About OASH
    
                        
                                            
      
      
      Public Health Offices
    
                        
                                            
      
      
      Advisory Committees

              

    



Breadcrumb
    HHS
                              ASH Home
                              Office of Science and Medicine
                              InnovationX
                              Health+ Human-Centered Design
                              Sickle Cell Disease


    

    

    Navigate to:
  Office of Science and Medicine
    
                                                  
                                                                  
            
      
      
      
      Chief Medical Officer
                                            
            
            Initiative on Substance Exposure in the Mother-Infant Dyad
    
                                                  
                                                                                        
                          
      
      
      
      InnovationX
                                            
            
            Covid-19 Data Driven Innovation
    
                                                                
                                                                                        
                          
      
      
      
      Human-Centered Design
                          
            
            Clinical Response through Emerging Technology (CRET)
    
                                                  
                                                                  
                          
      
      
      
      Sickle Cell Disease
    
                                                  
                                            
            
      
      
      
      KidneyX
    
                                                                
                                                                  
            
      
      
      
      Lyme Innovation
                          
            
            Lyme Innovation: Real-World Impact
    
                                                  
                                            
            
      
      
      
      LymeX
    
                                                  
                                            
            
      
      
      
      PandemicX
    
                                                                
                                                                  
            
      
      
      
      Vector-Borne Disease National Strategy
                          
            
            Public Engagement
    
                                                  
                                            
            
      
      
      
      The Kay Hagan Tick Act
    
                                    
                                            
            
      
      
      
      LeadershipText resize icon

                    




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
    Contact HHS
    
                        
                                            
      
      
      Careers
    
                        
                                            
      
      
      HHS FAQs
    
                        
                                            
      
      
      Nondiscrimination NoticeHHS Archive
    
                        
                                            
      
      
      Accessibility Statement
    
                        
                                            
      
      
      Privacy Policy
    
                        
                                            
      
      
      Viewers & PlayersBudget/Performance
    
                        
                                            
      
      
      Inspector General
    
                        
                                            
      
      
      Web Site Disclaimers
    
                        
                                            
      
      
      EEO/No Fear ActFOIA
    
                        
                                            
      
      
      The White House
    
                        
                                            
      
      
      USA.gov
    
                        
                                            
      
      
      Vulnerability Disclosure Policy
        Sign Up for Email Updates

Receive the latest updates from the Secretary, Blogs, and News Releases.

Sign Up
  HHS Headquarters
          200 Independence Avenue, S.W.
                  Washington, D.C. 20201
                  Toll Free Call Center: 1-877-696-6775​Disclaimer Policy: Links with this icon () mean that you are leaving the HHS website.
              The Department of Health and Human Services (HHS) cannot guarantee the accuracy of a non-federal website.
                  Linking to a non-federal website does not mean that HHS or its employees endorse the sponsors, information, or products presented on the website. HHS links outside of itself to provide you with further information.
                  You will be bound by the destination website's privacy policy and/or terms of service when you follow the link.
                  HHS is not responsible for Section 508 compliance (accessibility) on private websites.For more information on HHS's web notification policies, see Website Disclaimers.
              Continue
                  Go back