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Research Data Management (Health Sciences)

Tips for managing data and creating a data management/sharing plan.

Considerations for Sharing Data

Sharing data is one way that researchers contribute knowledge and build up the scientific record. When data is shared, research can be replicated and new research to be conducted with the data. Additionally, if the data is collected in a standardized way, it can be combined with other data sets to help inform larger-scale research. It is useful to consider if and how you will share your data prior to beginning your project since it can affect the methods you use to collect your data. Here are some things to consider when sharing your data.

  • What data can/will be shared?
  • Will de-identified individual participant data be made available?
  • What other documents need to be shared to make this data usable?
  • When will the data be available?
  • Will access to the data be restricted in any way?
  • How will the data be made available?

Additionally, many funding agencies and respected journals require data to be shared in order to receive funding or have your paper published. Learn more about these requirements under the "Data Management/Sharing Plan" page of this guide.

De-identifying Data

De-identifying data is an important task which should be undertaken prior to sharing data. This is not easy! It can be difficult to completely de-identify data, and it takes time to do so. Also, be sure you are following your IRB approved plan and any relevant informed consent protocols.

Some data sets cannot be completely de-identified. If you want to share data that cannot be completely de-identified, or if you have questions around de-identifying your data, please contact the Data Office for Clinical & Translational Research (DOCTR) for assistance.

Below are resources for learning more about de-identifying data sets.

Locally Maintaining Data for Sharing

If you are able to share your data (indicated in IRB-approved research protocol and informed consent) but don't want it to be freely available through a repository, you can choose to maintain your data locally and share it upon request. This requires that you maintain your data in a way that you will be able to access and share it when a request is made - see Organize Data for tips. To protect all parties involved, including researchers and research participants, we strongly recommend that you require the following information before sharing data:

  • An IRB-approved research plan for the proposed research
  • A signed Data Use Agreement

The Data Office for Clinical and Translational Research (DOCTR) can help with preparing your data to be shared. DOCTR will review your data to ensure that it does not contain any HIPAA identifiers and they can connect you with the office that can help create a Data Use Agreement. Please contact them if you are choosing to share your data upon request.

Selecting a Data Repository

When selecting a repository to share your data, there are some considerations to take into account. In addition to the logistics and costs of depositing your data, you should also look for a repository that has similar data sets to help increase findability. Questions to ask when looking at repositories:

  • Does this repository contain similar data sets?
  • Does the repository have procedures in place for preservation and backup?
  • If required for your data, does the repository have options for access restrictions (e.g. permissions management, restrictions on use)? Who will manage these restrictions?
  • Does the repository allow for attaching a usage license to the data set?
  • What procedures does the repository have in place for forward migration of storage technologies, to avoid obsolescence?
  • ​How much will it cost to deposit the data and how will these costs be covered?

Data Repositories

Below is a non-exhaustive list of repositories or repository-finding resources that may be suitable for sharing your data. We do not endorse any specific product - please contact the repositories and ask questions to determine which one will meet your needs for sharing your data.