Data and Measurement Methods
Data collection of components of care for people living with Sickle Cell Disease (SCD) was a foundational component of the Program. Periodic data collection of care measures ensured that grantees focused on the Program priorities that were set forth in the 2017 HRSA/MCHB FOA. This section offers detail regarding the following areas: • The groups involved with the data collection • The methodology for each of the data collection streams • Reflections about future data collection
Regional Coordinating Centers and National Coordinating Center Partnership The HRSA/MCHB funded five RCCs under a cooperative agreement. HRSA contracted with the National Institute for Children’s Health Quality to serve as the NCC to coordinate data collection and analyze data. The RCCs and the NCC were funded separately to conduct complementary work for the Program. The RCCs provided regional and local data and materials to the NCC for the data collection activities. The NCC’s major areas of work were collection, aggregation, and analysis of data from the RCCs and development and collection of materials for this Congressional Report, providing Congress and the public the results of their federal investment focused on improving the health and lives of people living with SCD. The NCC was also contracted to convene an Oversight Steering Committee (OSC). The OSC was comprised of RCC leads and additional experts who brought specific knowledge, skills, and connections to assist in making recommendations to the Program. OSC members provided input on measurements and gave additional expert feedback and updates about SCD work. See Table 1 for the roles of these three groups and Table 2 for information on RCC lead institution(s), their participating sites’ information, and their participating community-based organizations’ information.
Roles of Data Development and Collection Roles of the NCC, RCCs, and OSC This section details the specific tasks related to the NCC’s data management and collection role as well as the RCCs’ data responsibilities. The NCC, in collaboration with HRSA/MCHB and the RCCs, created a collective data and measurement plan for the implementation and collection of the Program measures. The NCC supported the fielding and implementation of two data streams, described below, by finalizing uniform data definitions for the data dictionary. The NCC supported and provided technical assistance to RCCs as they performed ongoing data collection and submission. The NCC was also responsible for aggregating regional data to provide nationally comprehensive data reports and disseminating findings across regions and to HRSA. Table 1. Data Collection-Focused Activities During the 2017-2021 Program DATA COLLECTION-FOCUSED ACTIVITIES NATIONAL COORDINATING CENTER (NCC) • F inalized data dictionary and manual of operating procedures (MOP) for both Provider Survey for Performance Measurement (PSPM) and Clinical Quality Improvement Measures (CQIM) • O rganized and facilitated monthly Data Management Working Group (DMWG) meetings attended by all 5 RCCs and HRSA/MCHB • O rganized and facilitated monthly meetings with each of the five RCCs to share challenges and solutions in data collection efforts • O rganized and facilitated OSC meetings twice a year • P rovided ongoing technical assistance to RCCs • C ollected, aggregated, and developed an annual report for PSPM data
REGIONAL COORDINATING CENTERS (RCCS)
OVERSIGHT STEERING COMMITTEE (OSC)
• C ontributed clinical expertise to measure set development
• P rovided balanced guidance and objective advice to shape Program activities and guide implementation
• F ielded annual PSPM and compiled data for NCC analysis
• E nsured activities were aligned with the objectives listed in the legislation as well as the specific aims of the Program
• C ollected and submitted CQIM data quarterly to • Provided timely knowledge about current trends as NCC for analysis and well as identified upcoming reporting political, legislative, and • Alerted the NCC regulatory developments of concerns and that could affect the work anomalies and annotated issues in the data set submitted in NICHQ’s CoLab
• P rovided opinions and assistance as requested in evaluating relevant data and preparation of required annual reports
• C ollected, aggregated, and developed a quarterly report for CQIM data • P rovide clinical and medical informatics expertise
Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program
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