Survey Report on the Impact of the COVID-19 Pandemic on Patients & Patient Organisations

EPF is happy to publish 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 COVID-19 pandemic on patients with chronic conditions, their communities and on patient organisations.

Conducted from 18 September to 18 October 2020, the results of this survey provide EPF with evidence for our policy and advocacy work. The results will support us in providing the patient perspective to several European initiatives relating to COVID-19, the strengthening of health systems and the digital transformation of healthcare. We hope that recommendations arising from this survey will ultimately inform European and national health policy.

This survey received a total of 125 responses, 46% were patient organisations and 54% were individual patients or carers. Individual patients or their carers answered questions related to the challenges they faced, access to healthcare, their concerns and the quality of information provided by governments and healthcare professionals during the pandemic. The results of this 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.

Overall, 57 patient organisations responded to the survey with 43% representing European or national organisations. They were asked a variety of questions revolving around their operations during the pandemic, opinions on protection measures and their involvement in the management of the pandemic. These survey results indicate that the pandemic had a huge impact not only on the financial stability of patient organisations, but also on the way they work.

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 initial survey will be used by EPF to support its ongoing European initiatives and advocacy activities relating to COVID-19. Moreover, a second edition of this survey will follow.

For any questions related to the survey report or how to get involved in the next edition, please contact policy@eu-patient.eu.