Community forum
This is an open space to discuss health research topics, feedback on the Gateway functionality and comment on resources such as datasets. Everyone is welcome to join existing discussions or start a new topic.

Feedback from IAG

Feedback from David Leather (GSK)

I am really keen to be involved believe me!

I asked some folks in VEO Specialty team to do a quick evaluation of the Gateway and its usefulness in identifying data/RWD sources in the UK. The reaction was very positive on the whole . I’ve not had time to synthesize and organize the feedback into coherent themes, so I’ll just provide their direct comments here:

· “Really impressed with this resource I think as a gateway to search by data type and indication it’s a really powerful tool. I thought I had seen it before and wasn’t quite as impressed but looks like some considerable investment has been put into it and it’s much better… [Will] definitely be using it to explore UK data in the future.”

· “This new Health Data Gateway has potential to be very useful. I particularly like that there are links to specific projects, so that it is easy to see projects/activities that are ongoing within specific datasets. I also think it’s great that there is a ‘tools’ section, and I was pleased to see links here to efforts that I was aware of, such as the CALIBER health records data phenotyping project. This could be very useful to understand potential future collaboration opportunities. It looks like they are also gathering feedback and implementing suggestions via the Community section.”

· “I searched for datasets that I already work with, such as the IBD Bioresource, Genomics England, etc. and it looks to me as if the breadth is good, I was able to find anything I searched for, and was interested to see other sources I was not aware of. Depth also looks good and there are links to the specific sites that can be used to follow up.”

· “I think the ability to look at metadata is really powerful.”

· “Metadata seemed sufficient. Very good that there is clear info on Data Access details and ways to request data.”

There were also some suggestions for improvement which broke down into two categories: data source detail and user experience/interface:

Data Source Detail

  • “[O]ne recommendation would be to potentially get information on completeness at a variable level (at present it is rated at the database level) which would help a lot in terms of assessing data for some of our endpoints of interest.”
  • “It would be great if there was more clear info on sample sizes, e.g. number of genotyped samples, but I suspect that sort of info might not be feasible to include in this type of catalogue.”
  • “I would also add more information on access requirements could be shown on the landing page for each data source.”
  • “Another great addition would be to add in publication links to published research using each database.”

User experience/interface

  • “Navigation could be improved. E.g. once in a section, it’s difficult to return back to where started, and having to keep on clicking the web browser back button is not very user friendly.”
  • “The search results default to the ‘dataset’ view. So, if there are no dataset results (but results are available for other categories) and users don’t know to look at the top of the bar to click to the other categories they might think that there aren’t any results at all. Suggestion would be to list all results, regardless of category.”
  • “An option to filter [search results] by level of metadata (bronze, silver, etc.) might be useful.”
  • “For some data sources, it seemed the only way to view the dataset was to click on individual parts of the data, e.g. the case report form for NIHR BIORESOURCE. I couldn’t intuitively see a way to look at an overview of the NIHR BIORESOURCE as a whole.”
  • “There is a category at the top for ‘Courses’ but doesn’t seem to list many entries. However, there are many entries for courses in ‘Projects’ so maybe a bit of housekeeping is needed on that….”

On the whole, a positive assessment with some relatively minor areas for improvement.

Yours
Dave

Thanks for the feedback! We have added your suggestions to our backlog.

You can track the progress of your suggestions at the following links:
Completeness at variable level
More detail on sample sizes
More up-front access requirements
Publication and dataset linkage
Improve back navigation
Show populated search term tabs
Filter for metadata quality
Viewing dataset as a whole
Move Courses from Projects

Read more about what will happen next https://www.notion.so/Feature-requests-and-feedback-d26dd1c0b14c40a985982c1269d7aeca