Case Studies

In the Netherlands, a gap in understanding the overall experiences and needs of cancer patients regarding the quality of care and quality of life has been recognized. To address this and gain insight into the perspectives of cancer patients, the Dutch Federation of Cancer Patient Organizations (Nederlandse Federatie van Kankerpatiëntenorganisaties, NFK) initiated and developed the “Donate Your Experience” (Doneer Je Ervaring) panel.

This initiative aims to gather perspectives directly from those who have experienced cancer (either as patients, carers, or those at high risk of developing cancer) through anonymous online surveys. Registered respondents receive email invitations to participate in surveys 3-5 times per year. To enhance representativeness, survey participants are also recruited through healthcare providers and social media. Each survey focuses on a different topic related to the quality of care or quality of life experienced by patients. The surveys are meticulously developed by patient advocates, NFK researchers, and experts in relevant fields, including physicians, nurses, and academics. The data collection is cross-sectional and national, ensuring a broad and inclusive approach.

The “Donate Your Experience” surveys differ from patient-reported outcome measures (PROMs) as they collect data on a broader range of aspects in cancer treatment and care to advise on policy development, rather than application in clinical settings. The collected data are analyzed and published on the NFK website (nfk.nl), along with proposed actions and clinical or social implications. The findings are also analyzed for scientific purposes and often attract national media attention, which helps raise awareness on specific topics and further enables patient advocacy.

NFK conducted its first surveys in 2013. Since then, the “Donate Your Experience” panel has evolved significantly, drawing 5,000 to 7,000 respondents per survey and improving representativeness. Over the years, the initiative has gained recognition from healthcare professionals, policymakers, politicians, and the media, giving cancer patients a powerful voice.

Enablers and barriers: Embedding these activities in NFK’s annual work plans promotes the sustainability of the initiative. However, limited funding hinders improvements in communication and recruitment efforts. Despite its successes, reaching patients with low educational levels or non-European backgrounds remains challenging. Achieving this may be possible through closer cooperation with hospitals that treat cancer, although this effort is resource-demanding.

Although survey outcomes are proactively shared and discussed with relevant stakeholders, concentrated advocacy efforts are required to drive change. There are notable examples of how survey results from the “Donate Your Experience” panel have been transformed into action. For instance, a 2019 survey revealed that many cancer survivors were denied term life insurance, which is often required to obtain a mortgage in the Netherlands. NFK lobbied at the Ministry of Health and Ministry of Finance, resulting in the "schone lei beleid" (clean slate policy), allowing cancer survivors to access term life insurance after a certain number of years (maximum of 10), depending on their diagnosis and age (NFK, 2021). This change required a legal amendment. Additionally, survey results on cancer care during the COVID-19 pandemic helped guide the return to post-pandemic cancer care (de Joode et al., 2020).

Lessons learned: To strengthen and enhance the value of “Donate Your Experience” surveys, higher representativeness, particularly of groups such as rare cancer patients, low-educated patients, and non-European patients, is key. As a non-governmental, patient organization, the “Donate Your Experience” panel has significantly impacted healthcare policies and changes thanks to the developed culture of stakeholder engagement and patient advocacy present in the Netherlands.