The Norwegian Brain Council proposes a number of specific sub-objectives and initiatives for the updated brain health strategy. They expect the strategy to meet needs that other documents do not and want to see a holistic approach to brain diseases adopted. The sub-objectives from 2018-2024 should be revised to address specific challenges. They emphasise the need for clear definitions of ‘brain disease’ and ‘brain health’, clear responsibility, as well as follow-up throughout the strategy period. They recommend that the organisation in the form of a partnership be continued. Key aspects of the input from members of the Norwegian Brain Council are presented below. See Appendix 10 for more details.
6.3.1 Input concerning objective 1 – Good lifelong brain health, prevention and quality of life
The Norwegian Brain Council believes that the updated brain health strategy should strengthen health-promoting and disease-prevention measures, with a focus on primary and secondary prevention. Measures must be implemented to prevent brain disease in the population, prevent disease burden and facilitate better quality of life for those affected by brain disease and their relatives. The strategy should emphasise health literacy, information measures and social responsibility. In addition, challenges such as the lack of expertise within the field and the need for multidisciplinary initiatives should be addressed. Norway should become a pioneer in the prevention of brain disease. The sub-objectives under primary objective 1 should include expertise within the field in education, research, knowledge availability, as well as good brain health in pregnancy, childbirth and maternity care.
6.3.2 Input concerning objective 2 – A more user-centred health and care service and better care for relatives
The Norwegian Brain Council believes that the previous brain health strategy contains unclear boundaries between primary objectives 2 and 3. Relatives play a critical role in strengthening the decision-making skills of patients with brain disease. There is a need for more binding cooperation between public and voluntary sector stakeholders in the health sector and the Norwegian Brain Council recommends that new sub-objectives be introduced to promote this, including an annual grant scheme. The proposals for sub-objectives under primary objective 2 include pilot models for collaboration with the voluntary sector, a coordinator role, decision aids and rights in connection with the burden of care among relatives.
6.3.3 Input concerning objective 3 – Good care from the onset of symptoms to diagnosis, treatment, habilitation and rehabilitation
The Norwegian Brain Council proposes improvements within diagnostics and rehabilitation, as well as enhanced interaction across service levels and life phases. The strategy’s sub-objectives should be revised to improve the quality of care pathways. Municipalities should develop follow-up programmes for the chronically ill and support collaborative projects with the voluntary sector. Equitable access to personalised medicine and systematic assistance is needed for the chronically ill and their relatives. The expertise of health professionals must be strengthened in order to facilitate the more effective management of brain disease. The Norwegian Brain Council proposes sub-objectives concerning the expansion of ParkinsonNet, structured care pathways, a trans-regional treatment network, multidisciplinary specialised rehabilitation and the mapping of diagnostic delay.
6.3.4 Input concerning objective 4 – Adequate knowledge and quality through research and innovation
The Norwegian Brain Council believes that improving the treatment and follow-up of patients with brain disease will require an increase in research funding. Research results must be implemented effectively and advanced treatments should be made available in Norway. There is a need for a better overview of research areas that need strengthening, especially as regards living with the disease. The brain health strategy should include quality registries and increase knowledge concerning patient experiences. Clinical research must be given a higher priority and be better integrated into hospital operations. Some of the proposed sub-objectives include the establishment of new research centres, the continuation of NeuroSysMed and NorHead, more quality and treatment registries and a knowledge base for the disease burden linked to brain diseases.