European Patients Forum publishes report on the impact of the COVID-19 pandemic on patients and patient organisations

The European Patients Forum (EPF) has published the results of its survey on the impact of the COVID-19 pandemic on patients and patient organisations.

The aim of this survey was to gather more information on the lived experience and impact of the pandemic on patients with chronic conditions, their communities and on patients’ organisations.

Conducted from 18th September to 18th October 2020, the results of this survey have provided the EPF with evidence for its policy and advocacy work. The results will support them in providing the patient perspective to several European initiatives relating to COVID-19, the strengthening of health systems and the digital transformation of healthcare.

The survey received a total of 125 responses, 46% were patient organisations and 54% were individual patients or carers.

The findings found that 95% of patients surveyed had experiences challenges during the pandemic, 65% of patients experienced stress and anxiety, while 56% of patients felt socially isolated. In addition, 49% experienced delay in treatments.

The survey also revealed difficulties for the 57 patient organisations questioned, 43% of which represent European or national organisations. These findings showed 67% of patient organisations had to revise their 2020 work plan to survive during the pandemic, 50% were forced to change their organisational focus, 44% have concerns over financial stability and 50% believe there will be a decrease in human resources.

The results of the survey show that there is significant room for improvement for both healthcare providers and national authorities on the clarity of information, communication and public health guidance.

Ultimately, this survey serves as the testimony that, even as funding opportunities decreased, and activities became more difficult due to the ongoing pandemic, patient organisations continued working at the forefront of advocacy to advance the interests of patients and their carers.

The results of this survey will be used by the EPF to support its ongoing European initiatives and advocacy activities relating to COVID-19.

For any questions related to the survey report or how to get involved in the next edition, please contact

Download the survey here.