EUROQOL | ANBI

The Stichting EuroQol Research Foundation has been granted the status of Charitable Institution, in Dutch Algemeen Nut Beogende Instelling (ANBI), since January 1st, 2014. Shown below is information that an ANBI should make public. Please contact us if you have questions, or require more information.

Aims

Our Aims are in keeping with our Mission and Vision:

• To serve the public interest by supporting / instigating / performing scientific research and development of instruments which describe and value health without an aim for profit.
• To promote the scientific and other interests of the EuroQol Group Association (“EuroQol Group”).
• To manage intellectual property rights that the members of the EuroQol Group have acquired in the context of the EuroQol Group Association.
• To promote the use of instruments developed by the EuroQol Group and to support individuals and organizations across the world seeking to use those instruments.
• To foster and support an international community of researchers whose activity informs the development and application of EuroQol Group instruments.
• To ensure free access to the accumulated research expertise of the EuroQol Group and to actively promote the transfer of knowledge and evidence regarding the use, analysis, and interpretation of measures developed by the EuroQol Group.
• To support promising early career researchers in the field of health and quality of life research through involvement in EuroQol Group activities.

Policy Plan

For our policy plan please click here.

ANBI FORM

For the ANBI form, in Dutch only, see here.

Financial policy                                  

• The Foundation does not have an aim for profit.
• The capital of the Foundation is formed by subsidies, gifts, bequests and other income. The Foundation receives financial support by means of sponsorship/ license income from commercial parties active in the development of drugs or medical devices. The Foundation requests a modest contribution to the costs of the development of the instruments when these are used in work that will not result in scientific publications in the public domain. No contribution is expected from EQ-5D use by non-commercial parties.
• In 2021 the Board of the Foundation approved the current investment policy. Please click here for the current version.
• The Foundation’s capital is used to finance scientific research studies and necessary software, an annual scientific congress and other scientific meetings and other costs of the Foundation, such as personnel costs.
• The members of the Board will not be remunerated for their activities.
• Personnel working for the Foundation are remunerated in line with the collective labour agreement aligned with Dutch Universities.

The Treasurer of the Board of the Foundation will present at least a balance sheet and the statement of income and expenses within 4 months after the financial year has ended on June 30th at the general assembly meeting of the EuroQol Group.

Report of activities

In the past financial year (2021-2022) the EuroQol Research Foundation received 6,797 requests to use EQ-5D instruments. These requests came from all over the world. The top 10 requesting countries were, in descending order: the United Kingdom, the United States, Germany, Australia, Japan, the Netherlands, Canada, China, India and France. The vast majority of EQ-5D use is for free by non-commercial users, and in most cases a license agreement is not needed after registration: 4,279 users were provided with EQ-5D free of charge without the need for a license agreement. These users only needed to agree to our Terms of Use. 516 non-commercial license agreements were set up for free use. EQ-5D is used for free in academic research, healthcare and by other not-for-profit organisations seeking to improve patient and population health. For commercial companies 892 paid license agreements were set up with commercial companies. The sponsorship income generated by this fraction of users enabled the Foundation to achieve its Aims.

Increasingly, EQ-5D is used for Routine Outcome Measurement (ROM) and as a Patient-Reported Outcome Measure (PROM). EQ-5D is used province- or nation-wide as a PROMs measure in the United Kingdom, Norway, Sweden, New Zealand and Canada. EQ-5D is also included in official population health surveys at national and regional levels in many countries around the world, for which no license fee is paid, contributing important evidence to health policy. In fact, no license fee is charged for non-commercial use of EQ-5D of any scale.

Sponsorship income of the Foundation has shown substantial and sustained growth over the past 10 years, with a brief dip in revenue in financial year 2019-2020. The financial year 2021-2022 showed an increase in income of 21%. In the preceding financial year (2020-2021) an increase in sponsorship was evident of 34%. As noted, financial year 2019-2020 was characterized by a 13% drop in income, as compared to financial year 2018-2019. The longer-term trend was 15-20% growth in sponsorship income annually.

When taking deferred sponsorship income into consideration, total sponsorship income has increased by 18%, from € 9,276,371 in financial year 2020-2021 to € 10,974,645 in financial year 2021-2022. Due to unrest on the international financial markets, a negative financial result was realized of – € 968,079. As a result, the Executive Committee was able to approve research projects for a lower total value, as compared to the previous financial year, for a total value of € 5,451,793. This is a decrease of 9% compared to the previous year.

Looking forward, similar to 2021-2022, a significant amount of sponsorship income in previous years will be available in this financial year 2022-2023. The Board is working with several forecasting scenarios, but even in a pessimistic scenario of a 10% decrease in sponsorship income, a total research budget of approximately € 5.5 million is anticipated. Similar to last year, the Board and the Executive Committee are jointly discussing options to keep our spending capacity to this high level, in line with our Strategic Plan and the Mission and Vision of the Group.

Research studies funded or co-funded by the EuroQol Research Foundation are those that meet the aims and objectives stated above. Typically these are methodological studies on using the EQ-5D, or the analysis and modelling of EQ-5D data. Increasingly, studies are funded on new instruments in development by EuroQol members. Furthermore, studies were started on the Youth version of EQ-5D and on obtaining general population reference data in countries in the Americas, Asia and Europe.

Finally, in line with our Aims, the Foundation funded scientific meetings for a total cost of €795,290. For the first time in two years these were physical meetings, where some attendees joined the meetings online, which impacted the costs of these meetings, due to a higher need of audio-visual equipment and personnel. These meetings were well attended by both members and non-members of the EuroQol Group Association, and yield significant benefit in terms of progressing scientific debates. In addition, frequent educational webinars and workshops are now offered to the broader scientific community throughout the year.

(Version 15DEC2022)