Lessons Learned and Recommendations

The Program collected data focused on goals and objectives intended to improve the health of people with SCD. Collecting data from health systems is challenging and therefore the Program lessons learned relate to data collection.

Lesson 1: Capitalizing on Prior Work

To capitalize on prior program work, data measures should be consistent over time. Consistency will allow sites to continue established systems and improve ones that need editing instead of restarting new efforts each funding period.

Lesson 2: Value of Qualitative Data Collection

While a formal qualitative interview process was not originally planned as part of this project, pivoting from general site visits to individual in-depth interviews to accommodate COVID-19 restrictions provided an opportunity to gather rich experiences directly from SCD providers across the country. Future data collection would profit from continuing qualitative data collection and adding both site visits and individual interviews to obtain the most complete representation of regional and participating site work.

Lesson 3: Piloting a Provider Survey

Having a national perspective of providers who care for people with SCD is important. Collecting the PSPM data at two timepoints (2019 and 2020) was important in reflecting provider attitudes, areas of specialty, and types of care provided. However, to be able to compare survey answers across time points, having a uniform definition of the group who should be sent the survey ahead of survey fielding is necessary. While both survey results provided informative data, the results of the second provider survey – where a uniform definition was employed – will be useful to build upon in future iterations of the Program.

Lesson 4: Consideration of Differences in State and Local Variances

Public health guidelines and resources, as well as variations in size, experiences, and resources of the participating sites, impacted RCCs’ ability to collect data. An assessment of these types of variations will be helpful before implementing the next data collection. The work needed to ensure high-quality, consistent data collection can require significant effort and expense, which is important to consider. As the next iteration of the Program is planned, the above lessons learned may be useful when creating the measure sets and data dictionaries. This report contains a complete set of recommendations in clinical care, healthcare policy, and ongoing programming and future initiatives regarding SCD care.

The 2017-2021 Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program addressed clinical and psychosocial needs to improve the health and quality of life of people with sickle cell disease. The Regional Coordinating Centers conducted numerous activities in the Program priority areas, particularly the three healthcare domains described in this report. These activities together with the Program recommendations will inform and enhance future efforts to provide quality care for people living with this complex condition. Appendices and other documents provide additional information about subjects covered in this Report to Congress, including SCD and its impact on those with the condition, their families, and caregivers; methodology and data collected for the Program; a compilation of select RCC activities; summary of the impact of the COVID-19 Pandemic on the efforts of this Program; and learnings from the Program, all of which can be found in the Appendix and the Recommendations. Additionally, this report includes a Model Protocol and Compendium of Tools and Resources readily available for use by any organization or healthcare system seeking to improve the health and lives of people living with sickle cell disease.