De Nederlandse Kanker Agenda

Objectives

The Dutch Cancer Agenda is a ten-year, whole-of-society framework to reduce cancer’s impact and improve life before, during and after cancer, placing people, citizens and relatives at the centre irrespective of age, sex, background or circumstances.[1][2][3]It contributes to Europe’s Beating Cancer Plan and addresses prevention, early detection, diagnosis, treatment, follow-up, palliative care and quality of life.[4][2]

• Reduce preventable cancer by addressing tobacco, alcohol, ultraviolet radiation, infections, environmental pollution, diet and physical inactivity.[5]
• Improve early detection through equitable, evidence-based screening, higher participation, risk-based approaches and better integration with diagnostic follow-up.[6][7][8]
• Deliver faster, less burdensome and more personalised diagnosis and treatment, while avoiding over-treatment and under-treatment and reducing unwarranted variation between hospitals.[9][10][11]
• Strengthen care for rare cancers, including timely diagnosis, molecular diagnostics, expert-network care, access to treatments, linked data and international research.[12][13]
• Ensure proactive palliative care based on each person’s values, wishes and needs, alongside integrated support for physical, psychological and social needs.[14][15]
• Improve quality of life for people living with or after cancer by preventing and managing late effects, promoting healthy lifestyles, and enabling participation in education, employment and society.[16][17][18][19][20]
• Support relatives, informal carers and bereaved people with practical, psychological and social support, while strengthening societal understanding of cancer and dying from cancer.[21][22][23][24]

The agenda contains 20 goals, of which five highlighted goals receive concrete collective action plans; goals are assessed against their potential effects on incidence, mortality and survival, quality of care and quality of life.[2][25][26]Priority-setting considers impact, attention and urgency.[27]Its quality framework includes effectiveness, safety, patient-centredness, timeliness, efficiency and equality of treatment.[3][28]

Specific 2032 ambitions include reducing smoking to 5% of adults and 0% of young people and pregnant women; increasing safe sun behaviour by at least 15% from the 2023 baseline; reducing fine particulate matter exposure by 44%; enabling informed genetic-testing choices; and reducing barriers to early cancer detection.[29][28][30][31][6]The agenda also seeks to minimise the negative financial consequences of cancer and ensure that people can study and work according to their wishes, needs and capacity.[19][20][32]

Implementation

Implementation is led through the Dutch Cancer Collective, an independent, open partnership of more than 100 organisations from healthcare and wider society.[3]It connects and aligns existing initiatives rather than establishing a separate programme, using collaboration across regions, sectors and specialisms to generate synergy and accelerate progress.[1][2][33]Participating bodies include patient organisations, care providers, research institutions, civil-society organisations, advocacy groups, funders and government bodies.[3]

• Develop goal-specific action plans through small acceleration teams comprising leading partners, using a Theory of Change to identify underlying problems, activities and intended results.[24][26]
• Align partners’ existing and new programmes, projects and initiatives with shared priorities, while retaining responsibility for delivery within their respective roles.[33][34]
• Support delivery through the NKC hub, a small project team that coordinates collective action, assists acceleration teams, develops tools, connects partners and communicates progress.[34][35]
• Use six delivery mechanisms: organisation of care and support; research, innovation and implementation; data infrastructure; education; information and communication; and policy.[25]
• Improve interoperable and standardised data infrastructure across diagnosis, treatment, aftercare and palliative care, including linked molecular, clinical and quality-of-life data where relevant.[5][13]
• Embed person-centred care through shared decision-making, understandable information, multidisciplinary working, expert care, proactive care planning and collaboration across primary, secondary, tertiary, social and informal care.[11][36][15][18]

The agenda builds on Dutch programmes and agreements, including the Integrated Care Agreement, Healthy and Active Living Agreement, National Prevention Agreement and National Programme for Palliative Care.[33]It also seeks European collaboration and resources through the European Cancer Mission, Europe’s Beating Cancer Plan, EU4Health, Horizon Europe and Digital Europe.[37]The Dutch Cancer Mission Hub supports exchange, learning and collaboration with other national hubs.[37]

Monitoring combines annual review of priority goals, shared partner responsibility and collective intervention where progress requires it.[33]The NKC hub is to develop a dashboard, initiate an annual evaluation of the agenda and publish progress through its website and other communications channels.[35]The website also provides progress updates, reports and current action plans for highlighted goals.[25][19]Outcome assessment is intended to consider incidence, mortality, survival, quality of care and quality of life, although a consolidated national indicator set, reporting methodology and formal accountability framework are not specified in the supplied material.[26][35]

Available indicators include smoking prevalence, safe sun behaviour, screening participation and detection rates, diagnostic and treatment intervals, survival, patient-reported outcomes, late effects, employment and financial consequences.[29][28][7][9][36][17][38][32]Screening development is supported by the National Institute for Public Health and the Environment, which works with relevant parties on a screening development agenda.[8]

No dedicated agenda budget, quantified implementation allocation or overall funding gap is specified.[2][26]The agenda identifies access to European funding and co-financing of research and infrastructure as potential resource mechanisms.[2][39]It also recognises affordability pressures from rising cancer-care costs, workforce shortages, costly precision treatments, and fragmented financing for palliative, lifestyle, late-effects and work-related support.[1][40][36][15][41][42]

Monitoring & Evaluation

The agenda combines overarching outcome assessment with goal-specific evidence, annual review and a planned dashboard. It assesses potential impact using cancer incidence, mortality, survival, quality of care and quality of life, qualitatively and, where possible, quantitatively.[26]The Netherlands Cancer Collective evaluates and reviews priority goals annually, allowing priorities and action to adapt to progress.[33]The Netherlands Cancer Collective hub is to develop a dashboard for tracking progress and initiate an annual evaluation of the agenda.[35]

• Monitor the 20 goals through the agenda website, including progress updates and relevant reports for highlighted goals.[25]
• Assess expected effects across incidence, mortality, quality of care and quality of life.[25]Quality-of-care dimensions include effectiveness, safety, patient-centredness, timeliness, efficiency and equality of treatment.[28][43]
• Assign shared responsibility for implementation to partners, with the collective expected to monitor progress and intervene where necessary.[33]
• Develop action plans for the five highlighted goals through acceleration teams, using a Theory of Change to link underlying problems, activities and intended results.[26]

Indicators and baseline evidence vary by priority. The smoking goal includes a 2032 target of 5% smoking prevalence among adults and 0% among young people and pregnant women, with relevant measures including smoking prevalence and trends in smoking-related cancer and mortality.[29]The safe-sun goal aims to increase adherence to safe sun-behaviour advice by at least 15% by 2032 against a 2023 baseline.[28]Air-pollution monitoring includes mapping exposure by location, time and source, linking anonymised mobile and air-quality data, and using sensors for real-time measurements and warnings.[44]The stated 2032 target is a 44% reduction in exposure to fine particulate matter.[30]

Screening evidence includes 2022 participation of 68% for bowel screening and 71% for breast screening, while cervical screening participation rose from 46% after one year to about 65% after five years.[7]The agenda seeks to improve participation, reduce screening harms and develop risk-based screening, while the National Institute for Public Health and the Environment, known as RIVM, works with relevant parties on a screening development agenda.[7][8]The European Beating Cancer Plan calls for indicators to monitor and assess screening programmes, with screening based on the latest available scientific evidence.[45]

Diagnostic and treatment monitoring draws on referral and diagnostic intervals, adherence to the three-week diagnostic standard, treatment-start timing, five-year survival, shared decision-making, over-treatment and variation between hospitals.[9][10][11]Treatment evaluation is intended to use real-world data and evidence, prediction models and Patient Reported Outcome Measures, including assessment of over-treatment and under-treatment.[36][46]Rare-cancer learning is intended to use linkable molecular, clinical and quality-of-life databases, prospective data collection and innovative research designs.[13]

Several quality-of-life priorities provide baseline measures but lack operational evaluation arrangements. These include more than 38,000 annual diagnoses of metastatic cancer and potentially inappropriate final-phase care for 34% of affected people.[14]For late effects, 35% of people living with or beyond cancer reported that long-term effects had not been discussed by healthcare providers.[17]For work, 60% reported that hospital healthcare professionals did not discuss cancer’s effects on employment.[38]Financial consequences were reported by 76% of people living with or after cancer, while 90% of relatives reported needing care or support themselves.[32][21]

A consolidated national indicator set, reporting timetable, evaluation methodology, surveillance protocol and formally designated accountability body are not specified in the supplied extracts.[35][26]

Costing & Financing

The agenda identifies substantial cost and sustainability pressures but does not provide a dedicated implementation budget, financing envelope, quantified funding gap or overall resource-mobilisation plan. Cancer care represented approximately 7% of Dutch healthcare expenditure in 2019, equivalent to about 6.5 billion euro.[47]Per-person cancer costs in the Netherlands were 60% higher than the European Union average in 2018.[27]

• Identify hospital care as the largest component of cancer expenditure, at 5.5 billion euro in 2019, or 84.6% of cancer-care costs.[47]
• Record expenditure on medicines and medical devices of 225 million euro in 2019, representing 3.5% of cancer-care costs.[47]
• Address rising cancer-care expenditure, workforce shortages, population ageing, increasingly complex care needs and new treatment options through a financially realistic and sustainable approach.[1][40]
• Use European programmes, including EU4Health, Horizon Europe and Digital Europe, as potential resources for cooperation, research and implementation.[37]

Access to innovative care is constrained by cost and reimbursement processes. Precision treatments are costly and not available to all people with cancer.[36]Molecular diagnostics are not available in every hospital partly because of their costs and the expertise required.[10]Delays in market access and reimbursement are associated with differing European evidence requirements, inconsistent cost-effectiveness criteria, Dutch reimbursement procedures and subsequent negotiations between hospitals and insurers.[46]Innovative cancer treatments are reimbursed after an average of 234 days following European approval, with delays reaching approximately 700 days.[48]

The agenda proposes co-financing scientific research and infrastructure for risk-based screening, but provides no amount, source or allocation mechanism.[39]It also identifies inadequate financing and legislation as barriers to trans-mural palliative care, while lifestyle interventions are generally not funded because their effectiveness in cancer treatment is considered insufficiently evidenced.[15][41]Cross-domain reimbursement for lifestyle programmes is identified as a potential solution for people living with or after cancer.[16]

Other resource issues include inadequate public and private prioritisation of time and money for rare-cancer research, insufficient financing for work-related support, financial barriers to healthy behaviour and genetic services, and the compulsory excess as a barrier to late-effects care and support.[49][42][50][18]Environmental and prevention measures may reduce healthcare pressure, but no monetary estimates or economic assumptions are supplied.[43][44]