EQ-5D | Digital Data Collection

NEW DIGITAL FORMAT

From 6 April 2022 onwards, a new digital format for EQ-5D has been made available. This new digital format can be used on any digital device and will be made available for all EQ-5D versions (3L, 5L, and Y) in all languages that are currently available digitally.

This new format will supersede the current device-dependent formats (PDA/Smartphone, Tablet, Laptop/Desktop). As such, these versions can no longer be selected via the registration pages on the EuroQol website. Customers with an open terms of use agreement, or an open license agreement, will keep access to these “legacy” EQ-5D formats. As a courtesy, these existing customers will be given access to the new digital format of their registered legacy EQ-5D versions.

Please note that at the moment not all of the new Digital EQ-5D versions are shown as available on the website. The Office team is working hard to release these versions shortly. Therefore, if you want to use an unavailable Digital EQ-5D version, please select such a version manually in the Available EQ-5D Versions screen of the registration form. After registration, an Office team member will be in contact with more information.

EQ-5D REPRESENTATION LIBRARY

In parallel, we have rolled out the EQ-5D Representation Library, which consists of EuroQol Office–approved EQ-5D screenshots of the new digital format in all available EQ-5D versions and languages.

To assist customers with the correct digital implementation of EQ-5D in the new format, we will supply them with the following for all requested EQ-5D versions and languages via the EuroQol Customer Portal:

Excel sheet with the EQ-5D labels
Digital Representation Design Guidelines – detailed instructions on how to implement the EQ-5D on a digital platform. You can access the document here.
EuroQol Office Representations – example screenshots of digital EQ-5D reproductions for every requested language, which comply with the Digital Representation Design Guidelines. These will enable customers and vendors to compare their own digital EQ-5D implementations and check adherence to EuroQol’s standards. Click here to download an example.

For some languages, extra instructions will be provided.

On the website tables (3L, 5L, Y) have been made available summarizing all the EQ-5D versions and languages available in the new universal digital format.

SCREENSHOT REVIEW WORKFLOW

Up until April 2022, EuroQol required customers to comply with the screenshot review process for every digital EQ-5D version and language before EQ-5D could be used in a new study. Unlike paper EQ-5D versions, where the respondents are presented with a ready-to-use version, digital EQ-5D versions have to be built by the user, or vendor, based on the provided source Excel file, Digital Representations Guidelines, and EuroQol Representation demos in which the standards are explained.

From 6 April 2022 onwards, screenshot review by the EuroQol Office team is no longer mandatory. However, as a service, the Office team continues to do screenshot review on request. From then onwards, the customer will be solely responsible for checking the correctness of all digital EQ-5D Representations. As a service to commercial customers, the EuroQol Office team will request to see EQ-5D implementations selected at random, as a quality check. Feedback will then be provided to customers, and vendors if applicable, on the Representation quality.

We will be providing customers with EQ Office Representations of all requested languages and EQ-5D versions. With these Representations, customers can verify the correct placement of all EQ-5D labels for every requested language. This is of critical importance, as EQ-5D is primarily an instrument completed by patients/respondents themselves.

We are also providing customers with EuroQol’s Digital Representation Design Guidelines, which will enable customers and vendors to check their digital EQ-5D implementations for adherence to EuroQol’s Representation Standards.

Please find a document describing the Digital Representation Design Guidelines here.

ADVICE FROM THE EUROQOL OFFICE TEAM

Customers interested in digital EQ-5D data collection with the new digital format are strongly encouraged to ensure that a quality process is in place to verify the correctness of all digital EQ-5D Representations in all languages used in a study/project before data collection starts. As outlined above, besides the Digital Representation Design Guidelines, EuroQol will provide customers and vendors of all requested EQ-5D versions and languages with EuroQol Office Representations – which are examples of how every digital EQ-5D implementation should look. Before starting digital EQ-5D data collection, customers and vendors should verify whether their digital EQ-5D implementations exactly match the Representations provided by the EuroQol Office.

While the customer is solely responsible for checking the correctness of all digital EQ-5D Representations, the EuroQol Office team is available if required to help with screenshot review or digital Representation issues.

NEW LICENCE FEE STRUCTURE

The new User License Policy has come into effect on 6 April 2022. For commercial customers, a new license fee structure has been introduced. The new digital format, which allows data collection on any digital device, has become 50% more expensive than the paper version. As a consequence, digital EQ-5D data collection has become more expensive for some users, and cheaper for others.

Please note that the Board of the EuroQol Research Foundation will review the license fee structure after 6 months, as the impact of this new structure on the income of the EuroQol Research Foundation is hard to predict.

NON-COMMERCIAL USE IS FOR FREE, AFTER REGISTRATION

From 6 April onwards, screenshot review will no longer be mandatory for non-commercial customers who want to collect data digitally on an unsupported platform. This means that as of 6 April all non-commercial use of EQ-5D are free, after registration.

We encourage non-commercial customers interested in collecting data digitally to consider using REDCap, LimeSurvey or Qualtrics, as we are providing users with modular versions of EQ-5D, which contain the correct formatting.

Non-commercial customers who want to collect data on an unsupported digital platform will be required to download, sign and upload a “Digital Use Letter” via the EuroQol Customer Portal, after registration. The Digital Use Letter provides customers with basic guidance on how to create a correct Representation of EQ-5D on their digital platform. This is of vital importance, as an incorrect Representation of EQ-5D could invalidate the collected data.

Please see the new User License Policy for more details on the registration process and obtaining permission to use EQ-5D.

FAQ SECTION

Can I still use the already received device-dependent EQ-5D versions in ongoing studies?

Yes, in ongoing studies the device-dependent versions can continue to be used. These will become “legacy” versions, which will not be updated in the future and will gradually be phased out.
If new languages are added to an ongoing study, these will be provided in the new digital format, as these are the most up-to-date versions. If for ongoing studies you would also like to receive the device-dependent language versions for consistency reasons, please inform your EuroQol contact person. However, please note that the use of these legacy device-dependent versions will be at your own risk, as legacy versions will no longer be maintained or updated.

Can I use the (new) digital format with my active license agreement for device-dependent versions?

Yes, active device-dependent license agreements will include the right to use the new digital format. However, license agreement amendments to add languages to device-dependent license agreements will not be possible, as the device-dependent license agreements will be phased out. To add languages, a new license agreement will be drawn up.

I own a device dependent License Agreement and would like to use additional languages.

Please be advised that after 6 April 2022, we will only provide new license agreements for using the new digital format, with the new license fee structure. Amendments to add languages to device-dependent license agreements will no longer be possible, because the use of device-dependent versions will be phased out.

How will the new screenshots review process work?

Licensee and Vendor will be responsible for creating correct digital Representations, based on the documents provided by EuroQol. The EuroQol Office team will no longer be involved in the screenshot review of all reproductions. However, the team is available if required to help with screenshot review or digital Representation issues.
As a service to commercial customers, the EuroQol Office team will request to see EQ-5D implementations selected at random, as a quality check. Feedback will then be provided to customers, and vendors if applicable, on the Representation quality. The main rule is that every deviation from the Representation Design Guidelines, or from the provided Representations, is at the risk of the Licensee/Vendor.

Is paid screenshot review by the EuroQol Office team possible?

EuroQol will not be able to offer paid screenshot review services for the new digital format. Please be advised that there are commercial parties offering review services, such as translation agencies and EPRO vendors with experience with the EQ-5D. Please contact these parties directly if you are interested in these services.

(Version 28MAR2022)