1 Patient-Centred Health Services
Equal access to assessment, diagnostics and treatment
The Norwegian Government’s goal is to create patient-centred healthcare services. This refers to healthcare services that secure help, information and care for patients when they need it, and where they have the opportunity to influence, impact and have control over their own decisions. Patient-centred healthcare services involve equal access to high-quality health and care services. The primary goal of the strategy is to ensure that all people with rare diagnoses or health conditions have equal access to high-quality assessments, diagnostics, treatment and follow-up.
Principles and criteria for the prioritisation of methods and initiatives aimed at patients and patient groups with both common and rare diagnoses are stated in the Report to the Parliament (White Paper) on Prioritisation (9). As stated in (10) Sections 2 and 2a of the Prioritisation Regulations, the prioritisation of special health services shall be based on criteria for severity, benefit and resources. Rarity is not a specific priority criterion, even if diagnostics present special challenges.
Specific priority guidelines have been developed for different medical areas. These guidelines will include conditions covered by the definition of rare diseases and conditions, and that will result in recommendations for granting the right to care with deadlines for the most commonly referred conditions in each medical area. Certain diagnoses and conditions are not mentioned in the priority guidelines. Referrals, however, must still be evaluated on the basis of priority criteria. The use of priority criteria and priority guidelines will contribute to a more equal access to assessments and treatment.
User involvement and integrated services
Service users and patients receiving specialist health services and municipal health and care services have a statutory right to participation and involvement. This applies to both the design of their own services and to the choice of available treatment methods through shared decision making.
In patient-centred health services, the aim is for patients, family members and medical personnel to experience health and care services such that patients:
- are actively involved in their healthcare and are both seen and heard
- experience integrated services across hospitals and municipalities
- find that services are provided by teams created for them
This strategy has five overarching objectives:
1. Equal and faster access to high-quality assessment and diagnostics
Medical advancements and increased expertise make it possible for more people with rare diagnoses, diseases and conditions to obtain better and more precise diagnostics more quickly. Good patient trajectories with equal and faster access to high-quality assessment and diagnostics will help ensure that people with rare diagnoses are given the correct diagnosis as early as possible.
2. Equal access to high-quality treatment and follow-up
Medical advancements and technology help ensure that an increasing number of patients can be offered treatment. An objective is for patients with rare diagnoses and conditions to receive equal access to treatment, including new and experimental treatment. However, most patients with rare diagnoses will have complex needs for which there are no cause-oriented therapies. For all of these patients, multidisciplinary symptomatic treatment, habilitation, rehabilitation and services from other sectors will be essential to ensure a good life. Individual needs should be assessed from a life course perspective. Patients and professional communities will have access to new expertise and assistance for assessments, diagnostics and treatment of rare diagnoses and conditions through participation in the European Reference Networks (ERNs) that facilitate cooperation on rare diseases and highly specialised treatment.
3. Good patient pathways, better cooperation and coordination
People with rare diagnoses and complex needs for health care often experience challenges due to inadequate coordination and cooperation between various services.
An objective is to establish good patient pathways with a clear division of responsibilities and a structure and organisation that contribute to more comprehensive care for these patients. User involvement and participation at the service and system level must be facilitated.
4. Mastery of everyday life with a rare disease or condition
Many people with rare diagnoses will have health issues and the need for long-term services throughout much of their lives. An objective is for everyone to receive services that provide support and that promote coping skills, activity and participation, making it easier to live with a rare disease or condition. Health and care services must be made better aware of how various types of disabilities, diseases and conditions can affect a person’s need for assistance.
5. Knowledge and expertise –cooperation, research and registries
Assessment, treatment and research all rely on good patient registries and international cooperation. Good patient registries require a common system for coding patients with rare diseases, as well as good national coverage. It is essential for Norwegian professional communities to actively participate in international research, as the patient base for rare diagnoses is very small. It is also important to strengthen efforts to develop and disseminate expertise in each professional area throughout the country.