Support Centre: Researcher FAQs

Do I need an account to browse the Gateway?  

No. 

You can browse the Gateway without an account. Creating an account gives you additional functionality such as: 

i) Adding datasets of interest to a library – by adding datasets to a library you can then send a general or feasibility enquiry to multiple Data Custodians at the same time, rather than needing to send multiple emails 

ii) Saving searches – gives you the ability to re-run searches and see if new datasets have become available. 

How do I find a dataset/ I can’t find the dataset I need. What should I do? 

Start by searching using keywords related to your research question. 

You might search for: 

• A disease or condition 

• A population 

• A research topic 

• A study or cohort 

• A data use ontology 

Or filter by: 

• The type of health data 

• A geographic area 

• An organisation or Data Custodian 

Learn more about how the search works: https://healthdatagateway.org/how-to-search  

If you can’t find a dataset, try: 

1. Alternative keywords 

2. Broader search terms 

3. Related diseases or conditions 

4. The name of the study or programme 

5. The organisation that may hold the data 

6. Related Collections 

See our video on how to search here 

Can I access individual patient records through the Gateway? 

No. 

The Gateway is not a system for accessing individual patient records and does not hold identifiable patient information. Information on what information the Gateway does hold is available in our Privacy Policy. 

Researchers requiring access to individual-level or sensitive data must follow the relevant Data Custodian’s access and governance arrangements. 

What is a Data Use / Research Project? 

The Gateway Data Use Register allows Data Custodians to publicly show how their Datasets & BioSamples listed on the Gateway are being used, by whom and for what purpose. A Data Use entry includes a summary of the Research Project. The Gateway uses the term Data Use / Research Project, to aid the understandability of the Entity for a wide audience. Anyone can search the register to view all Data Uses approved by Data Custodians, and these can be edited and updated as a project progresses or more outputs become available.  

Researchers can see how Datasets listed on the Gateway are already being used to help inform their data request choices or to find possible collaborators, while the public and funding bodies can search the register to understand how data is being used. 

You can explore the growing number of Data Uses published on the Gateway Data Use Register, which can also be found under the ‘Data Uses / Research Projects’ search tab. 

Data Uses can also be found via Dataset & BioSample landing pages, specifically in the ‘spider diagram’ view – this directs users to projects that have used the specific Dataset or BioSample. 

Does the Gateway provide access to datasets? 

No. 

The relevant Data Custodian and its governance processes determine whether access can be granted. 

The Gateway is in no way responsible for data access decisions. 

Does a Gateway listing mean that data is openly available? 

No. 

Access arrangements can vary, including: 

• Open access 

• Registered access 

• Managed access 

• Restricted access 

• Access subject to specific governance requirements 

Always check the access information for the dataset or biosample. 

How much will access to the data cost? 

The cost of accessing datasets may vary from Data Custodian to Data Custodian.  

For further information on how much access is likely to cost please check the “access request cost” section of the Dataset & BioSample page you are interested in. If the cost isn’t provided, you can contact the Data Custodian via a general or feasibility enquiry to find out more. 

What is the Data Use Ontology? 

The Data Use Ontology is an international standard to categorise how data can be used, created by the Global Alliance for Genomics & Health.  DUO codes provide a structured and consistent guide for Researchers to understand whether dataset or biosample restrictions fit with their project/study needs.