Center for Health Data Innovation & Impact

Services

The Center for Health Data Innovation & Impact provides the following services, which may be requested through SPARCRequest:

• Training in methods for research using secondary datasets.
• Consultation on:
  • The selection of secondary datasets
  • Data Use Agreement understanding and processes
  • Study design
  • Analytical data set design and construction
  • Data management techniques
• Data extraction and analytical data file construction from secondary data sets.
• Specialized study design services (e.g., phenotype sensitivity assessment, matching, inverse weighting).
• Specification of disease phenotypes based on ICD and CPT codes.
• Data analysis to support grant applications
• Collaboration on funded, unfunded, and industry-funded projects
• Centers for Medicare and Medicaid Services (CMS) Data Management Plan
• Strategic organization and development

The Health Data Research & Methods Core has acquired and manages many secondary datasets that are governed by data use agreements (DUA). Our current inventory of datasets is listed in the table below. Additionally, the Health Data Research & Methods Core provides consultations to help investigators identify other publicly available datasets that may support their research projects.

Research with secondary data does require IRB approval. In some cases, studies using these data are deemed exempt and in other cases they have been deemed “Non-Human Research” by the MUSC IRB. However, all requests to access data in the datasets managed by the Health Data Research & Methods Core must be approved by the Health Data Research & Methods Core director to ensure DUA compliance. All final research products (posters; presentations; manuscripts) must be submitted to the Health Data Research & Methods Core for approval of compliance with DUA requirements.

Each DUA has specific criteria for use of the data. Before being given access to the data, investigators will meet with a member of the Health Data Research & Methods Core leadership team to go over all criteria for that specific DUA. Typical criteria include not reporting cell sizes less than 11 observations, directions for HIPAA codes, and prohibiting linkage to other data sources. Some DUA’s have additional criteria such as re-use fees, or collaboration with a Health Data Research & Methods Core member. All relevant criteria will be discussed with a Health Data Research & Methods Core leadership member.

To use Health Data Research & Methods Core data, the primary investigator will be required to sign a Health Data Research & Methods CoreUse Agreement that is specific to the dataset being accessed. The Health Data Research & Methods Core leadership member they are consulting with will provide the appropriate form.

Consultation with Health Data Research & Methods Core Leadership about the specific contents of each dataset is recommended.

The Health Data Research & Methods Core has a large portfolio of validated SAS programs for selecting disease phenotypes (e.g. stroke, MI, diabetes, Alzheimer’s Disease, asthma, HIV) and prescription bundles (depression meds, blood pressure med, biotics etc), as well as validated programs to assign comorbidity risk (Charlson and Elixhouser), frailty measures, stroke severity.