The Head and Neck Cancer Support Network (HNCSN) submitted views on the proposed Regulatory Standards Bill, emphasizing its potential to address systemic inequities, enhance accountability, and prioritise patient-centred care. Representing vulnerable populations such as Māori, Pasifika, and those affected by head and neck cancer, HNCSN identified strengths and shortcomings in the current regulatory environment and offered recommendations for improvement.

Strengths of the Current Regulatory Framework

HNCSN highlighted the government’s commitment to public welfare through initiatives like Te Aho o Te Kahu – the Cancer Control Agency, which targets equitable cancer care and prevention. The growing focus on equity and stakeholder engagement has enabled grassroots organisations to influence policy discussions. Furthermore, New Zealand’s adherence to international standards ensures regulatory credibility and alignment with global best practices.

Concerns with the Current System

Despite progress, significant gaps remain in equity, oversight, and support for vulnerable populations. HNCSN noted that:

• Health inequities persist, particularly for Māori and Pasifika communities, who face later-stage cancer diagnoses and poorer outcomes due to systemic barriers.

• The fragmented healthcare system burdens patients with complex conditions, like head and neck cancer, who must navigate disjointed services.

• There are limited accountability mechanisms to ensure consistent implementation of equity-focused initiatives.

• A lack of long-term, patient-centred policies often prioritises systemic efficiency over holistic support, such as speech therapy and mental health care for cancer survivors.

• Community organizations, vital for bridging service gaps, operate with insufficient recognition and funding.

Support for Key Proposals

HNCSN supported setting regulatory principles in primary legislation, embedding equity and accountability as core values. These principles should align with Te Tiriti o Waitangi and the Bill of Rights Act 1990 to protect marginalised communities. Setting clear, enforceable equity benchmarks was critical to ensuring meaningful outcomes.

Recommendations for Improvement

To address these challenges, HNCSN proposed the following:

1. Mandate Equity in Healthcare Delivery: Regulatory frameworks should prioritise equity for Māori and Pasifika populations through enforceable benchmarks.

2. Streamline Care Pathways: Regulations should promote integrated services to reduce burdens on patients with complex conditions.

3. Strengthen Accountability Mechanisms: Oversight bodies must monitor compliance, with measurable outcomes tied to equity and patient-centered care.

4. Support Community Organisations: Recognise and fund grassroots groups like HNCSN to complement regulatory systems.

5. Enhance Data Transparency: Collect and publish disaggregated data to track disparities and improve targeted interventions.

Safeguards for Information-Gathering Powers

HNCSN stressed the importance of protecting privacy and avoiding overreach when granting the Ministry for Regulation information-gathering powers. Safeguards should include:

• Purpose limitation and adherence to strict privacy standards.

• Independent oversight to monitor data collection and use.

• Engagement with affected communities to ensure culturally safe practices.

Broader Oversight Role for the Ministry

While supporting an expanded oversight role, HNCSN urged the Ministry to embed equity as a core mandate, engage meaningfully with stakeholders, and streamline regulatory processes to avoid inefficiencies. Proposals to introduce measurable outcomes and periodic reviews were also welcomed.

Conclusion

HNCSN emphasized the need for the Regulatory Standards Bill to address systemic inequities, enhance oversight, and prioritize patient-centered care. The organization remains committed to advocating for a fairer and more inclusive regulatory environment that uplifts New Zealand’s most vulnerable populations.