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Medical & health Thing 3: Data sharing and discovery

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Data may be shared in many ways. Here we explore places, and ways, that data can be shared and is currently being shared.

Exploring repositories

Repositories enable discovery of data by publishing data descriptions ("metadata") about the data they hold - like a library catalogue describes individual materials held in a library. Most repositories provide access to the data itself, but not always. Data portals or aggregators draw together research  data  records from a number of repositories, e.g. Research Data Australia (RDA) aggregates records from over 100 Australian research repositories.

  1. Click on this description of a dataset from the National Survey of Midlife Development in the United States (MIDUS): a collaborative, interdisciplinary investigation of patterns, predictors, and consequences of midlife development in the areas of physical health, psychological well-being, and social responsibility.
  2. Have a close look at the record to see the ways this record is discoverable and accessible. Explore how a secondary user can access the data and what formats they can download it in, and see how it is connected to hundreds of research publications.

Discipline specific repositories

  1. Start by going to re3data.org
  2. Click on Browse > Browse by subject > click on Medicine in the second ring from the middle
  3. Explore the range of repositories listed under ‘Medicine’. Can you find one relevant to your research?

An introduction to ‘open’, ‘shared’, and ‘closed’ data

You may have noticed that not all data described is available for immediate access.

  1. Watch this 2.5 minute video from the Open Data Institute titled Open/Closed/Shared: the world of data. Note that ‘shared’ data can also be called mediated or controlled access - this is often the preferred way for medical data to be published.
  2. Now open this page on Open Data to see a more in-depth view of why data is sometimes open, shared or closed.
  3. Have a look at one of these examples of open data from medical or health research:

Not all data is suitable to be openly shared in its original form, such as identifiable patient medical records. Strategies for sharing sensitive data will be explored in Thing 4: Sharing sensitive data.

Data sharing practices

  1. Take a look at this infographic from Wiley titled Research Data Sharing Insights [PDF, 2.08MB]  It provides a succinct overview of current data sharing practice and perceptions.

    researchdatasharing

  2. Note that 48% of ‘heath scientists’ say they are sharing their work. Has this been your experience? Also note where the work is shared. What implications does this have for your work / the people you work with?
  3. Data sharing can also be undertaken by Industry - see what a collection of pharmaceutical companies are doing as an example. What are your thoughts on this?

M&H Thing 3

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Go to M&H Thing 4: Sharing sensitive data or All M&H Things


in 23 (research data) Things