EQ-5D Web Version

General

fold faq

What is the EQ-5D online system?


The EQ-5D online system is a centrally managed, web-based, safe and yet open system that allows researchers to conduct studies using the EQ-5D internationally. This is one of the available alternatives for researchers next to creating a reproduction of the EQ-5D web version.

Licensing

fold faq

We would like to use the web version of the EQ-5D. What do we need to do?


A choice has been made between implementing the EQ-5D online system and reproducing the EQ-5D Web version from scratch. The project should be registered on our website (www.euroqol.org/register-to-use-eq-5d.html). Thereafter, you will receive more information about the terms of use. If acceptable, you will receive a draft license for review. 

fold faq

Are there any costs associated with using the EQ-5D online system or Web version?


In instances of ‘commercial’ use (e.g. pharmaceutical companies or medical device manufacturers), the EuroQol Research Foundation charges a license fee in accordance with its policy document. For non-commercial use e.g. academic or clinical studies a 500 Euro fee is charged for small studies (n < 200) to cover the costs of creating a module (EQ-5D online system) or the review of screenshots (Web version reproduction). The corresponding fees for use of the EQ-5D in a Routine Outcome Measurement (ROM)/ Registry setting are described in the same policy document, which is available on request.

fold faq

The EQ-5D system requires an activation code. What is it and do I need it?


Whenever a study/project specific module is created for use of the EQ-5D online system, an activation code is tied to it. This activation code manages the number of observations, duration of the module and the amount of languages a client is entitled to use. 

fold faq

Can one license be used for multiple projects?


It depends on the type of license. For commercial use, a license typically covers all studies starting during the term. For non-commercial use or Routine Outcome Measurement, permission is limited to the studies/projects which are about to commence. 

Technical

fold faq

We have our own in-house survey platform, how can I connect to the EQ-5D online server?


The EuroQol Research Foundation has documentation and guidance on how to connect your in-house survey platform to the EQ-5D online system. The linking of the two requires a few very common and cross-browser compatible techniques. Please ask the EuroQol Research Foundation for a copy of the “Licensed Partner Connect Manual” for the exact technical requirements for linking your system.

fold faq

We would like to store the EQ-5D answers in our own survey system. Is this possible?


Yes. The EuroQol Research Foundation makes available a number of methods for receiving back the data:

  1. Direct data handoff: for each individual EQ-5D respondent that completes the EQ-5D, the data are directly (real-time) posted back to the calling system (e.g. the in-house survey platform).  You will have to make a small customization to your in-house survey system. These changes are described in the “Licensed Partner Connect Manual”. This manual can be requested. Please contact the EuroQol Research Foundation.
  2. Data transfer by e-mail (“MailMeBack”-option): for each completed EQ-5D, an e-mail containing the data in tabular format and XML format is sent to a specified  e-mail address that has been defined as part of the licence agreement. This mechanism allows companies unable or unwilling to use the “direct data handoff method” to receive data back real-time. 
  3. Bulk data downloads: on request, the EuroQol Research Foundation can download all EQ-5D administrations (for a specific licence) and distribute to the client.
fold faq

What are the technical requirements for respondents answering EQ-5D?


JavaScript has to be enabled on the respondent’s machine. If not enabled, the respondent will be notified of that fact and also he/she will not be able to answer the EQ-5D questions.  This JavaScript requirement is in-line with today’s de facto industry standards.

fold faq

We do not have our own survey platform, but still want to receive EQ-5D data back on an individual level. Is this possible?


Yes. One of the features for receiving data is the “MailMeBack” option. This feature creates an e-mail, containing the data for an individual EQ-5D administration, that is sent immediately after a respondent completes the EQ-5D. E-mails are sent to an e-mail address specified by the client (license-holder) as part of the module.

fold faq

We do not have our own survey platform but want to bundle the EQ-5D online system with other questionnaires. Do you have options for this?


Yes. We have a number of options:

  1. We offer a stand-alone HTML page that you can link to. With this HTML page your respondents can manually trigger the start of an EQ-5D administration. You will have to instruct your respondents to enter their study ID (which should be an ID meaningful to you). We will then store the EQ-5D data together with this ID. When receiving back this data, you will also see the ID so you can match up the EQ-5D data with the other data you intend to collect from respondents.
  2. We can introduce you to companies that can field any other questionnaire alongside the EQ-5D.

Privacy

fold faq

Is the EQ-5D online system safe?


Yes, we have taken a number of precautions:

a. We use a secure web-server. This prevents eavesdropping on communication with parameters/
b. All communication is done through HTTP Post methods (instead of GET methods which allow the snatching of data though browser history).
c. We do not collect any user identifiable information. For storage of EQ-5D records, we use an internal ID numbering scheme. Although we allow you to provide us with a custom respondent ID (meaningful only to you) when one of your respondent’s answers the EQ-5D, this ID does not show up as a visible field to any of our administrators.
d. The EuroQol Research Foundation’s EQ-5D system is compliant with the EU Directive on Data Privacy, HIPAA, EMEA Annex 11, CFR 21 Part 11. We store a full audit trail of all data collected. This is done on an anonymous basis based on our internal ID numbering scheme.  In other words, we don’t know who the data is for. However, if you approach us and request documented proof that authentic data was collected for the respondent IDs you supplied us with, we could provide this information.
e. Once an EQ-5D is completed, the record is locked and cannot be re-displayed again. 

fold faq

Is your system EMEA annex 11 compliant?


Yes, including, but not limited to, the following features are present:


a. Access to the system requires a username and a password. All passwords are required to have specific characteristics (include both letters and numbers and longer than 7 characters) to ensure they are not easy to guess. They are required to be changed on a regular basis. Furthermore, the software ensures that passwords cannot be repeated.
b. All actions taken in the database are recorded in a secure audit trail so it is possible to review what was done by which username and when it was done.
c. All data is stored on a central server backed up daily in a certified hosting facility so the data is secure. Furthermore, data is not stored locally on the user’s system. Once the submit button is pushed on a page the data is committed to the database.
d. The system is fully documented and tested so that it meets the requirements in the documentation. This documentation is available for review upon reasonable notice by relevant parties.
e. The EuroQol Research Foundation does not routinely claim copyright of any data collected using the online system.

fold faq

Do you keep a copy of the data?


Yes, we keep a copy of the data to ensure that we are able to generate a full audit trail of all data in the system and to prove the authenticity of that data collection; however, this is done in an anonymous way (i.e. we don’t know (and don’t want to know) the identity of the EQ-5D respondents).