The Norwegian Cancer Society (NCS) is one of the largest organizations in Norway representing the voice of those affected by cancer. Our organization consists of 113 000 members, 25 000 volunteers and 190 employees, all dedicated to promoting the cancer cause. NCS works continuously to improve society’s attitude towards the prevention and treatment of cancer. We fight cancer locally, nationally and globally through research and preventive measures, information, support, advice and lobbying.
Involving patients and relatives
Cancer patients and their relatives have a unique knowledge of their cancer progress and their encounter with the healthcare system. Accordingly, in 2016 the Norwegian Cancer Society set up a national panel of users comprising more than 1000 patients, former patients, next-of-kin and the bereaved. The involvement of patients and relatives are given high priority and will be intensified in the years to come.
About the panel of users
Our panel of users consists of over 1000 cancer patients, former patients, next-of-kin or bereaved. Their experience with cancer must be within the last five years. The participants must have access to e-mail, we send out our questions and inquiries by mail. We aim to carry out 10 rounds of questions annually.
In addition to responding to various questions, the participants fills out a registration form that contains a number of background variables, including gender, age, marital status, education, occupation, ethnicity, place of residence and cancer diagnosis.
How do we use it?
The panel gives us easy access to cancer patients own experiences, knowledge and self-reflections. Since we launched the panel in June 2016, the participants were used to inform the NCS of their opinions within a number of areas, such as:
– the needs of patients and their next-of-kin
– whether these needs have been met
– overall satisfaction with cancer care in Norway
– dental health issues in relation to cancer treatment
– whether they have needed practical help in their homes during their treatment
– the needs of family, friends and caretakers
– the importance of having someone to talk to who are in the same situation (peer-to-peer conversations).
In addition, we asked the panel of users whether they are willing to serve as user representatives in different forums, and we have recruited user representatives for research projects. Patients and their families have also been involved in assessing intervention campaigns. Several of our panel users were also recruited for interviews in the media.
Contact details for further questions
Heidi Brorson, Head of department, Norwegian Cancer Society