Center Child & Adolescent Health

Mission:

Established in 2003, the mission of the Child and Adolescent Health Measurement Initiative’s Data Resource Center for Child and Adolescent Health (DRC) is to expedite and support effective use of data from the National Survey of Children’s Health (NSCH) to improve child, youth, family and community health and well-being in the US center child.

What is the Data Resource Center for Child and Adolescent Health (DRC)?

The DRC is a national center assisting in the design, development, documentation and public dissemination of user friendly information about, data findings on and datasets and codebooks for the National Survey of Children’s Health (NSCH). Since its initial design in 2001, the NSCH (first fielding in 2003) has been supported and led by the Health Resources and Services Administration’s Maternal and Child Health Bureau (HRSA/MCHB).

Who Supports the Work of the DRC:

The DRC is currently exclusively supported and funded by HRSA MCHB through Cooperative Agreement # U59MC27866 (which is for the years 2018-2023 for a yearly amount of $900,000/4.5 million total). Since 2001, the conceptualization, development, design, technical infrastructure and daily functions of the DRC have been supported by many different funding streams, including subawards and cooperative agreements from HRSA/MCHB. Over 20 additional funding streams contributed to the iterative development of the DRC and supported many of its “data in action” and research efforts to put data into action to inform policy and practice and train and build data literacy in the field.

What resources does the DRC provide?

The DRC provides point-and-click online access to national, state, and regional findings from the National Survey of Children’s Health and the National Survey of Children with Special Health Care Needs. To assist in the use of this data, the DRC provides several user-friendly data resources

Data are collected from parents and thus contribute a much-needed voice in the drive to improve health system performance for children, youth and families. Parent involvement in children’s health is critical, including their perspective on their child’s health and their interactions with the health system and community in which they live.

History of the DRC:

Since its initial public launch in 2003, the DRC has moved through many phases of iterative design, development and activities, now focusing exclusively on the dissemination of data findings, survey information and datasets and codebooks related to the NSCH.  The DRC was conceptualized prior to the launch of the HRSA/MCHB sponsored and led 2001 National Survey of Children with Special Health Care Needs (NS-CSHCN). The initial vision, design and functions of the DRC was initially specified in 1999 as a collaboration among Christina Bethell (Director of the CAHMI), Paul Newacheck (UCSF Professor) and Nora Wells (Family Voices).  After numerous initial mock ups and technical and operational development steps, HRSA/MCHB awarded Dr. Bethell/CAHMI a pilot grant to further develop and test the DRC. A user-centered design and pilot process was then undertaken in 2002-2003 to arrive at the initial set of goals, features, design, functionality and technical development plan for the DRC.  At the same time, CAHMI continued to develop, test and collaborate with HRSA/MCHB to identify valid and valuable measures for inclusion in the NS-CSHCN and NSCH (including CSHCN Screener, seven domain Medical Home measurement, etc.).

The pilot to design and test the DRC public facing online/web-based data query and user support website involved five phases to assess interest, capacity and support needed to use data resulting from the NS-CSHCN and other similar data sets, like the NSCH. Focusing on the Title V and family-leader audiences, these phases included (1) in-person focus groups, (2) standardized self-reported surveys indicating interest and reactions to design elements, (3) in-depth structured interviews to identify preferred features and content for an online data query tool and resource center and (4) a workshop to further discuss needs and options for designing the Data Resource Center (DRC) and (5) an in-person website demonstration and evaluation session. Input obtained during 22 in-person educational workshops on the DRC and the use of the DRC by over 12,000 users (800,000 hits) was evaluated to assess the usability and value of the DRC in expanding the use of national data sets by non-research audiences essential to engage in the use of data to inform and stimulate the design of health care programs and policies for children and youth.

In the design pilot we found that over 85% of participants indicated that they were “extremely interested” in being able learn about and directly access and query national and state level child health and health care quality data sets. The vast majority of DRC visits were to use the online interactive data query tool. Examples of uses of data findings derived from the DRC include grant applications, legislative testimony, popular press public education, stakeholder education and engagement and needs and performance assessments as well as many other applications. E-mail and telephone technical assistance are central to the success of any DRC-like effort as well as in-person and other more in-depth trainings on how to think about, query and communicate data findings in a scientifically valid and effective manner.

The development processes leading to the current DRC concluded that without a DRC-like resource it is unlikely that essential policy, consumer and health system leaders will make use of national and state data on child and adolescent health and health systems performance such as now available on a yearly basis through the HRSA/MCHB supported and led NSCH.  The design and continued evolution of any DRC-like resource must be developed with ongoing and in-depth input from target users. The free, web-based, publicly accessible Data Resource Center on Child and Adolescent Health eliminates barriers faced by policy, provider, researcher, trainee and advocacy audiences in obtaining information in a real-time and user-friendly manner as well as to building data literacy to advance evidence-based policy, program development, and advocacy on behalf of children, youth and families.