Focus area 3: More user-centred cancer care
Cancer patients and their next of kin should be given good opportunities to participate in treatment and follow-up. In order for patients to participate in and contribute to their own treatment, they need access to information and tools that enable them to do so. Individual health literacy will also influence how patients feel about participating in choosing their treatment. Digital solutions can contribute support for decision-making and choice of treatment. It is important to develop and offer information and communication options that take into account health literacy, language and culture, including the Sami language and cultural understanding. Information and communication options must also be provided for patients and next of kin who do not wish to or are unable to make use of digital solutions.
Shared decision-making must be a real possibility for cancer patients. This is particularly important in relation to patients with a short life expectancy and patients where alternative therapies are an option. The purpose of shared decision-making is to allow patients, in consultation with healthcare professionals, to make choices in accordance with their own values and preferences.
Ten-year goal 8
All cancer patients who want it and their next of kin will be offered an individual digital overview of the patient pathway and digital follow-up at home
The goal is to give patients and next of kin easy access to digital solutions that provide overview and strengthen their opportunity to play an active role in their own treatment as well as facilitate digital follow-up at home. These services will provide relevant information about the patient pathway, including diagnosis and treatment, but also potentially beneficial follow-up after treatment. It must become easier to share information with next of kin and communicate with both hospitals and the municipal health service through digital channels.
The goal is for decisions to be made in consultation with the patient and for good, quality-assured tools to be in place to make it easier for patients to familiarise themselves with any issues that might arise. Data from the consultations could also play an important role in improving services and allowing us to adapt to the patient’s needs.
The digital platform Helsenorge.no is the main access point for information about Norway’s public health and care services. The Helsenorge app and the website Helsenorge.no help to give the population better overview and access and enable people to take a more active role in following up their own health.
The Helsenorge website currently contains information about different forms of cancer, prevention, diagnosis and treatment. There is also information about cancer patient pathways and the cancer pathway – home. In addition, services providing access to one’s own patient records from the specialist health service and access to information about prescription medication have been established. Helsenorge allows for digital dialogue between patients and GPs, and nearly 86 percent of Norwegian GPs used this service in 2024. It includes services for requesting repeat prescriptions, booking appointments and e-consultations. There are also services for digital dialogue with municipal care and nursing services, including notification and access for next of kin. The digital dialogue services for the care and nursing services are so far not available to the whole population. Approximately 50 percent of the population live in municipalities where this service has been introduced. Next of kin can access information based on consent.
Digital follow-up at home means that the health service can follow up patients in their own home. This technology makes it possible for patients, by agreement with the health service, to receive digital follow-up at home via selected welfare technology solutions and health apps that the patients use themselves or are helped to use. Measurements that the patients take themselves, for example heart rate, blood pressure or self-reporting questionnaires to map side effects of cancer treatment, are sent to healthcare professionals, who can respond and take action as appropriate. The data recorded by the patients themselves allow patient information to be shared across organisational boundaries. Digital follow-up based on information reported by the patients themselves means that patients can be followed up based on their individual needs rather than at fixed intervals set by the hospital. Various types of follow-up at home are being introduced in all the Norwegian healthcare communities and in many municipalities. A 2022 patient survey carried out by the Norwegian Cancer Society showed that cancer patients take a positive view of using digital health technology and that they want digital follow-up at home.
Ten-year goal 9
Cancer patients will have access to tools for participation and shared decision-making, and data from these tools will be used to improve the service provided
Needs and wishes differ from one person to the next. User participation in combination with good information and patient involvement in choosing their own treatment are important to individual patients as well as to the development of cancer care. Patients expect access to health information, more opportunities to do things for themselves and the opportunity to participate in and adapt treatment and follow-up to their own situation. Among other things, user participation means to offer shared decision-making and tools for shared decision-making, which is about providing sufficient and evidence-based information followed by a good communication process. It is important for patients to be given correct information about the expected effects and any side effects of their treatment, not least when it comes to palliative treatment when curative treatment is no longer an option. Patients must be given a genuine opportunity to reflect on their wishes for the end of their life.
Actual user participation requires the patient to have the ability and capacity to take in information. Patients’ health literacy is very important in enabling them to understand and benefit from health-related information, advice and guidance provided by healthcare professionals. Norwegian health literacy surveys show that a high proportion (one in three people) have poor health literacy (Norwegian Directorate of Health). Service providers are responsible for ensuring that necessary and useful information is made available to all users, and healthcare professionals have a duty to adapt information to the patient’s ability to understand what is said or written.
Ten-year goal 10
Change from calendar-based check-ups to check-ups as needed in cases where this is safe and in the best interests of the patient
The goal is for patients who use digital tools to feel a sense of increased participation, have fewer unnecessary hospital appointments and receive good and safe treatment for their cancer. More and more patients are followed up at home by means of digital questionnaires.
Hospitals will not schedule appointments at fixed intervals for patients with chronic conditions, but instead use a standardised questionnaire sent electronically to the patients. The digital solution allows for patients to receive follow-up when needed and avoid unnecessary hospital appointments. Needs-based outpatient clinic schemes with digital follow-up free up resources and make a great difference to the outpatient clinics’ capacity. Answers are electronically scored and checked by a nurse and doctor as required. Patients can also submit the questionnaire at their own initiative if necessary.
However, there will be situations where doctors need to physically examine their patient and where planned intervals set by the doctor could help to identify relapses early, perhaps even before symptoms arise, and start treatment.
When more patients use digital communication, resources can be freed up that will make it easier for the health services to follow up patients who cannot use such tools. Experience from the Norwegian National Welfare Technology Programme shows that using digital tools saves health personnel’s time, improves the quality of the service, improves coping and flexibility for patients, reduces stress and provides a more even workload distribution and better cooperation between healthcare professionals. One of the goals set out in Norway’s National eHealth Strategy is to reduce digital exclusion by providing differentiated and individually adapted services, thus ensuring that the ‘non-digital population’ are given the same access to health services as people who use digital solutions.