Appendix 7: Example of Internal Data Sharing Plan

NRMN Research Community Internal Data Sharing Plan

Purpose

The purpose of the data sharing plan is to ensure complete transparency and agreement on 1) the data elements being shared with the NRMN Coordination Center and 2) how this data will be used. The NRMN Coordination Center met with research managers from each research study team in Year 2 Quarter 4 to review the internal data sharing plan.

Data Transfer Process

Mechanism:

• The NRMN Coordination Center manages a UW-Madison secure Box folder for each research study team that allows for online file storage and collaboration.
• Select research study team members are provided access to the Box folder, including the principal investigator and research manager.

Process:

• Research managers upload data files to their Box folder on agreed upon intervals/dates which are listed in their project tracking spreadsheet; data files may include all data from all survey measures or only data for required and common measures.
• The NRMN Coordination Center reviews data files for required and common measure survey data using measure mapping materials that are developed for each research study team.
• If a data files contains other measures that have not been identified as a required or common measure, the NRMN Coordination Center deletes that data and uploads a new, cleaned file to the Box folder; only required and common measure data will remain in the Box folder.
• The NRMN Coordination Center creates a common measures dataset for each research study team that contains all required and common measure data across project surveys and uploads to Box; this file is updated periodically throughout the grant.
• The NRMN Coordination Center notes all updates to the common measures dataset to ensure that each research study team has up to date information.

Survey dataset file format:

• Research study teams are responsible for uploading data files at agreed upon intervals that coincide with their survey design using the following formats:
  • Preferred formats: SPSS/SAV or CSV
  • Other formats accepted: XLSX or SAS

Codebooks (information on response options and assigned values in datasets):

• Preferred format: Included in the dataset (SPSS) or uploaded as a separate Excel or CSV file
• Other formats accepted: PDF or Word Doc of survey with assigned values by each measure and item

Statement on shared data:

• The NRMN Coordination Center will only use data elements which have been agreed upon as required and common measures. Any data that is shared with the coordination center and does not fit into this category will be promptly and permanently deleted from our files. Research study team data that the NRMN Coordination Center has access to will remain in Box and be available to the research study team to ensure transparency.

Data Sharing Expectations

NRMN Coordination Center

• Update information in the research study team project tracking spreadsheet to ensure data management transparency
• Add new data to the common measures dataset in a timely manner
• Be responsive to questions and concerns regarding the data

Research Managers

• Upload data to the Box folder according to agreed upon deadlines
• Be responsive to any questions about the data
• Keep information up to date across the research study team project tracking spreadsheet to ensure data accuracy
• Liaise with your research study team to ensure that all team members are comfortable with the data sharing plan

Research Study Team Common Measures Dataset

A common measures dataset is created for each research study team. The dataset includes survey data from all required and common measures across project surveys. The purpose of this dataset is to promote transparency and accountability for how team data is being used and to emphasize that the NRMN Coordination Center will only use data from required and common measures.

A few key points include:

• Datasets will be stored in a UW-Madison secure Box folder and will be accessible to research study team members at all times
• The dataset file is updated periodically throughout the grant as the NRMN Coordination Center receives additional project survey data
• Common measures datasets from all research study teams will eventually be aggregated to create an NRMN Phase II common measures dataset
• Only aggregate descriptors of the NRMN Phase II common measures dataset will be reported to the NRMN research community