Coming Together to Improve Quality of Life for Patients with Sickle Cell Disease
Sickle Cell Disease is a challenge for those who live with it under the best circumstances. While the country is facing COVID-19, it becomes particularly significant. On June 24, 2020, the U.S. Department of Health and Human Services Office of the Chief Technology Officer (CTO) and the nonprofit Center for Open Data Enterprise (CODE) will partner with the Office of the Assistant Secretary for Health (OASH) to host a virtual webinar on Leveraging Data to Address Sickle Cell Disease. The webinar will feature speakers from both OASH and Howard University. An invite only virtual roundtable discussion on June 25, 2020 will follow the webinar, bringing together sickle cell disease (SCD) patients, patient advocates, policymakers, and other stakeholders. The event will identify data resources, gaps, and strategies to promote innovative applications that can help policymakers, healthcare providers, and other stakeholders improve care and quality of life for individuals with SCD. The webinar and roundtable are part of the Health+ Sickle Cell Disease initiative to accelerate the identification and implementation of solutions to improve the quality of life for patients with SCD.
Collaborating with the Office of the CTO and CODE in the initiative, &Partners conducted a human-centered design process involving SCD patients, patient advocates, and caregivers to identify six areas of opportunity that have been further refined to three key themes that the webinar and roundtable will explore in more detail.
- SCD care is difficult to access
- The emergency room is a last resort for patients
- People with SCD struggle with transition to adulthood
- “Trial and Error”: Patients bear the burden of individualizing their care plan
- Patients plan their lives around unpredictability of SCD
- SCD care requires complex support networks
CAPT David Wong, MD, Medical Officer with the Office of Minority Health in OASH, explained his thoughts on the human-centered design approach to improve the quality of care for patients with SCD: “I’m very impressed with the Health+ approach. You focused on the patient voice and interviewed a broad group of 25 patients to understand their challenges in getting respectful, compassionate care. Through patient engagement, I have heard about the challenges from families many times, and it is very emotional. It’s difficult to get the same level of effect from written documents. 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.”
Additional research and analysis conducted by CODE and the Office of the CTO helped to select three key themes that could be addressed with better access to data that stakeholders will discuss using existing SCD data resources to develop a better understanding of where data can intersect with and improve on the challenges the SCD patients face:
- The transition from pediatric to adult care for SCD patients
- Patients’ experiences in emergency departments (EDs) of healthcare providers
- Assessing treatment options and improving sustainable treatment
Existing SCD data collection efforts serve as a useful starting point for analysis and development. Currently collecting data from California and Georgia, the Sickle Cell Data Collection Program is a multi-state effort to collect individual and population level SCD data. The lack of a national-level SCD program leads to data and knowledge gaps that ultimately hinder SCD patients’ transition from pediatric to adult care, their experience in EDs, and the overall ability to assess and improve treatment options. The National Institutes of Health (NIH) have identified the need for a new population-based surveillance system to address these data gaps by following patients longitudinally and tracking demographic, laboratory, clinical, treatment, and outcome information.
Following the roundtable, HHS will hold a Health-a-thon event in September, an event where technologists and experts gather to develop prototypes and technological solutions from available data resources and approaches identified during the roundtable to address the challenges that patients face on a day-to-day basis.
Join us for the virtual roundtable webinar at 12:00pm EST on June 24. The event will be live streamed on https://www.hhs.gov/live/index.html.