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 involved patient is better able to contribute to achieving the goals of care and treatment, while patient safety risks can also be avoided more effectively.
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 involved patient is better able to contribute to achieving the goals of care and treatment, while patient safety risks can also be avoided more effectively.
Patient and Family Advisory Council (Patient och närståenderåd, PNR)
UCCC has a Patient and Family Advisory Council (PNR) to capture and make use of the experiences and expertise of patients and their families in the development of 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 actively contribute to the development and improvement of cancer care and related research by representing the perspectives of patients and their families.Through its advisory role to the UCCC Board, the perspectives of patients and their families are actively taken into account when decisions, priorities and strategies are developed. The council works actively with other cancer patient organisations and thereby brings a range of viewpoints and perspectives into its work.
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 centre'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 gynaecological cancer, where there is active collaboration with the patient organisation Network Against Gynaecological Cancer (gyncancer.se). The patient organisation participates in the annual regional conference days on gynaecological cancer.
My Care Plan
Another example of patient involvement is that, at diagnosis or when admitted for surgery, you will receive access to My Care Plan, either in paper format 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 you and is designed entirely for you. "My Care Plan" is part of the national cancer strategy and has been digitalised since 2019. The plan includes information about your diagnosis, the examinations you will undergo and when, and serves as a tool that enables participation and involvement throughout your care pathway.
Treatment Clinic in Gränby
Surveys conducted among patients at Uppsala University Hospital’s haematology 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 improve 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 haematological treatments.
This project is a unique collaboration between Uppsala University Hospital, the Cancer Network, three pharmaceutical companies (Beone, 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 favourable aspects.
