Organization: Swiss Group For Clinical Cancer Research (SAKK)
Project Name: Improving accessibility of clinical cancer trials result to patients
Funding Year: 2019
Project period: 3 years
Improving the accessibility of clinical cancer trials results to patients
This project seeks to take the existing patient engagement program at SAKK to the next level, by including patients in the process from trial design through to dissemination of results upon completion of the trial. Indeed, within the framework of this project, with the support of the SAKK Patient Advisory Board, SAKK wants to make the results of the trials accessible to patients, their relatives, and the public. In this way, SAKK wants to make clinical cancer research transparent and accessible to everyone.
Close exchange with cancer patients and patient organizations is vital for the further development of new and improved cancer therapies that seek to improve the chance of a cure and patients’ quality of life.
SAKK therefore set up the Patient Advisory Board in November 2015 with the aim of gaining a better understanding of the needs of cancer patients and their families, in order to improve SAKK research projects.
The Patient Advisory Board currently has eight members with a very wide range of experience and background knowledge. The members of the Patient Advisory Board undertake further training on an ongoing basis and contribute with their valuable knowledge to our projects.
For example, the Patient Advisory Board participates in the development of information for patients and in this way makes these documents easier to understand.
In the coming years, the Patient Advisory Board will also be involved more intensively in the planning and development of trials to include the needs of patients in the trial design. The first pilot projects have started and are being refined continually.
Another important project is the preparation of lay summaries of SAKK trial results, in order to make the results understandable and available for the patients and the public. Pilot projects to gather experience in writing lay summaries for various SAKK trials are ongoing.
Twice a year, the Patient Advisory Board organizes the SAKK Patient Forum. This public event, focusing on a different cancer-related topic each time, allows patients and interested individuals to learn more about the latest research findings and provides an opportunity to ask questions and participate in related discussions.
The Patient Advisory Board is contacted frequently by external partners (the federal government, research institutes, healthcare organizations and universities), and asked to actively work on their projects to include the patient’s point of view and needs.