EQ-5D Web Version FAQS

General

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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 respondents from all over the world to use the EQ-5D.

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Why did the EuroQol Group decide to use a centrally managed web-based EQ-5D version?


The Group considered it to be very important to safeguard the visual implementation of the suite of EQ-5D questionnaires. Over the past years we have seen a wide array of different web-based EQ-5D implementations that have not always been up to the quality and scientific rigor that we would hope for. Therefore, we have come up with a centrally managed solution that is designed and approved by the EuroQol Group while ensuring uniformity across studies.

Licensing

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


You will need a “web licence” for the EQ-5D. This allows you to connect to the EQ-5D system. This licence can only be issued by the EuroQol Group’s Executive office in Rotterdam, the Netherlands.

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How do we obtain a licence?


Please contact the EuroQol Executive office at userinformationservice(at)euroqol.org

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


In instances of ‘commercial’ use (e.g. pharmaceutical companies or medical device manufacturers), a licence fee must be negotiated with the EuroQol Executive office. For non commercial use (e.g. academic or clinical studies), 1000 Euros is requested for start up costs, with a minimum study sample size of 200 respondents.

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


Each digital licence is associated with an activation code. Whenever the EQ-5D is rendered, you will (implicitly or explicitly) need to supply this code. The code can be tied to an EQ-5D language-licence, a project-licence, a periodical licence, per quota or a companywide licence.

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Can we do multiple projects with one licence?


Yes you can. This depends on the arrangement you agree with the EuroQol Group Executive office. You can obtain a company-wide licence which means that you can use the EQ-5D online system for all of your projects.

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How many participants can use the EQ-5D?


This number is in theory unlimited but can be limited by the constraints set out in the licence agreement.

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I am fielding a study or project in multiple languages. Does the EQ-5D online system offer multi-languages?


  1. Yes. Over time all languages available in paper format will be adapted for web use and introduced into the EQ-5D online system.  
  2. You can select any number of language combinations in your licence arrangement. The activation code will only permit the languages specified in the licence arrangement.
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Can we obtain a web licence and then create our own web version of the EQ-5D?


Unfortunately no. The EuroQol Group made a strategic decision that it wants to centrally manage the appearance and the usage of EQ-5D. We are aware that certain companies are able and willing to re-create the EQ-5D visually but this is not permitted. Unauthorized usage of the EQ-5D outside of the EQ-5D online system will be challenged and if necessary, referred to the Group’s legal advisors.

Technical

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


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

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


Yes. The EuroQol Group 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 Group.
  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 Group can download all EQ-5D administrations (for a specific licence) and distribute to the client.
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We would like to receive all the data from EQ-5D at once. Is this possible?


Yes. On request we can send you an interim or final EQ-5D dataset for all the data that you collected according to your EQ-5D licence.

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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.

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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 (licence-holder) as part of the licence.

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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

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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 Group’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. 

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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 Group does not routinely claim copyright of any data collected using the online system.

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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).