Education, Research I 26 August 2024
WECAN’s Evidence-Based Advocacy Program: How Cancer Patient Advocates Ideated a Survey
Where it all began: the workshop
On January 17th-19th 2024, a group of 40 patient advocates, carers, and clinicians from 20 European countries have met in Munich, Germany, to participate in a workshop. Industry stakeholders and researchers also took part, to provide participants with essential knowledge and the skills needed to develop a research project.
The focus was on identifying the unmet needs of cancer patients and survivors, developing a research methodology, and formulating a communication strategy.
Workshop’s outcomes
During the workshop, participants identified 8 main topic areas, and they expressed an interest in carrying out targeted advocacy activities for cancer patients:
- mental health capacity
- managing chronic diseases
- patient organisations support
- mental health
- shared decision-making
- financial toxicity
- long-term follow-up
- End-of-life and palliative care
What’s next?
No advocacy plan can be carried out without evidence. The workshop was a collaborative effort and it led to the conceptualisation of the WECAN CANCERSurvey project .
This is a pan-European research project aimed at gathering and comparing Patient Experience Data (PED) on cancer patients’ journey, across cancer types, from the moment of diagnosis to treatment, care, quality of care, communication, support, and life post-treatment.
The CANCERSurvey project kicked off in June 2024. To keep updated on it, follow WECAN’s social media pages.
If you are a patient advocate or aspiring to be one, and you wish to contribute to this project, please fill out this form or contact [email protected].
Supporters
WECAN’s work and activities are hosted by the European Patient Advocacy Institute gUG on behalf of WECAN. Funding for the January Workshop was obtained from the following funders. Supporters had no role in the development of this project
