Data Methodology

increase the number of providers who are interested and feel equipped to care for people with SCD. Many providers emphasized how important it was to be part of a broader network of SCD providers for learning opportunities.

The structure and framework of the Program allowed for collaboration, which was particularly useful when specific questions arose. RCC leads could email all regional clinical sites or reach out to the other RCCs to obtain responses for a broader perspective. The ability to get timely, expert input was an important feature of this network. Smaller sites, often in rural, more isolated areas, single sites, or providers serving patients living in large geographic areas can now easily reach providers in the greater RCC networks for problem-solving and case discussions.

National Coordinating Center

In partnership with HRSA/MCHB, the NCC collaborated with the regional leads to finalize shared measures, align data collection activities, support communication, and receive data from the RCCs. From submitted data, the NCC created reports for HRSA/MCHB. The NCC developed this Report to Congress, a Model Protocol, and gathered resources for a Compendium of Tools and Resources. The National Institute for Children’s Health Quality (NICHQ) was the NCC.

Oversight Steering Committee

RCC leads and additional experts who brought specific knowledge, skills, and connections comprised the OSC. For the duration of the Program, the OSC met twice a year to give input and assist in making recommendations. The OSC Roster is in Appendix B.

There were two sources of quantitative data collected:

1. Provider Survey for Performance Measurement (PSPM) obtained through an annual online survey. The PSPM reports can be found here. 2. Clinical Quality Improvement Measures (CQIMs) obtained through quarterly review of medical records (electronic or manual). The Q1 2019 through Q4 2020 CQIM reports can be found here. Qualitative data were obtained by key informant interviews and gathering of reports and presentations shared in meetings among the RCCs. See Table 1 for the measures collected based on the Program objectives. Appendix C has full detail of the data methods, inclusion/exclusion criteria, and annotations. The data presented for the Program were collected for Quality Improvement (QI) purposes. In QI work, data are used to guide the implementation of activities; accordingly, data should be considered in the context collected.

Interpretation of the data should consider the following: • The data were collected through convenience sampling. • Measure denominators fluctuated over time due to variation in sites reporting each quarter. • The COVID-19 pandemic coincided with the 2020 data collection period. Given these factors, definitive assessment of improvements in program objectives across time is not possible and findings are not fully generalizable.

PROVIDER SURVEY FOR PERFORMANCE MEASURES (PSPM) COLLECTED ANNUALLY (2019, 2020) ELECTRONIC OR PAPER SURVEY SENT TO PROVIDERS

1. Number of providers in the SCDTDRCP

2. Number of patients seen by a SCDTDRCP provider in the past year

3. Number of providers in the SCDTDRCP participating in telementoring for SCD in the past year

4.

Number of SCDTDRCP providers who report feeling comfortable treating people living with SCD

5.

Number of SCDTDRCP providers who saw at least one patient in the past year and who prescribed hydroxyurea (HU)

CLINICAL QUALITY IMPROVEMENT MEASURES (CQIM) COLLECTED QUARTERLY*+ (2019-2021) EMR DATA PULL OR MANUAL CHART REVIEW COMPLETED

1. Hydroxyurea (HU) Use: measured by prescription rates (REQUIRED)

2. Transcranial Doppler (TCD) screening

3. Immunizations

4.

Transitions in Care

5.

Project ECHO® (provider-to-provider telementoring)

Note: All RCCs were required to collect HU use data. They also were required to select at least one additional measure. * Four of the five RCCs collected data quarterly. The fifth RCC collected data every six months. +All sites that initiated data collection may not have submitted data every quarter of the Program.