Cancer care for you as a patient
Patient involvement is a central cornerstone of UCCC’s work and one of the centre’s key goals. Cancer care should be carried out in consultation with and with respect for the patient’s autonomy and integrity. An engaged patient is better able to help achieve the goals of care and treatment, and this also contributed to more effective limitation of patient safety risks.
Patient and Family Advisory Council
UCCC is currently forming a Patient and Family Advisory Council (Patient och närståenderåd, PNR) to capture and take advantage of the experiences and expertise of patients and their families to further develop care. PNR will consist of 5–6 members, serving for a term of three years. The council is planned to meet regularly, twice per semester. The council will represent different ages, genders, and cancer diagnoses to enable the broadest contribution and interaction with the centre.
The council’s mission is to convey patients’ and families’ ideas and wishes on how cancer care and research should evolve and improve. It will serve as an advisory body to the centre’s board but can also independently raise issues with the centre. Importantly, the council serves as a communication channel to various patient associations, gathering their input.
Examples of topics to be addressed by the PNR:
- Accessibility
- Patient interactions
- New treatments
- Development projects
- Research
- Patient surveys
- Patient information, education, and lectures
In addition to the center’s PNR, there is ongoing collaboration with patients within the various cancer diagnoses treated at UCCC. For example, in lung cancer care, there is collaboration with the Lung Cancer Association (lungcancerforeningen.se). This association was founded 25 years ago by a former colleague at Uppsala University Hospital, Associate Professor Ola Brodin, and several colleagues at the hospital have actively supported the association through information and lectures. Another example is in gynecological cancer, where there is active collaboration with the patient organisation Network Against Gynecological Cancer (gyncancer.se). This association participates in the annual regional days on gynecological cancer.
My Care Plan
Another example of patient involvement is evident in the fact that patients, at diagnosis or when admitted for surgery, receive access to "My Care Plan" either in paper form or digitally via 1177. "My Care Plan Cancer" is a written care plan created individually for each cancer patient. The care plan is written in consultation with and for the patient. "My Care Plan" is part of the national cancer strategy and has been digitalised since 2019. The plan includes information about the patient’s diagnosis, what tests the patient will undergo and when, and serves as a tool that facilitates patient participation and influence throughout the care process. The patient creates the care plan together with healthcare staff. You can read more about "My Care Plan" on the Regional Cancer Centre website:
Treatment Clinic in Gränby
Surveys conducted among patients at Uppsala University Hospital’s hematology and oncology treatment departments revealed that, although patients were very satisfied with the care and service, many found the hospital environment stressful and parking availability inadequate. As a patient, it could take an entire day to travel to the hospital for a short treatment session.
To address this, Uppsala University Hospital has opened a treatment clinic in Gränby Center. The purpose of the clinic is to offer easily accessible hospital care to an increasing number of cancer patients. Patients come here to receive oncological or hematological treatments.
This project is a unique collaboration between Uppsala University Hospital, the Cancer Network, three pharmaceutical companies (Beigene, Bristol Myers Squibb, and Pfizer), and a healthcare development company (Adxto Care).
The response from our patients has been very positive, particularly with regard to the calm environment and proximity to their homes, both of which are highlighted as the most favorable aspects.
