Head of Data and Insight

Do you enjoy turning data into meaningful insight that drives real impact?

We’re transforming our Digital, Data and IT services to better partner with our user communities and harness technology that drives our mission forward. Our teams are growing, developing new skills, and embedding product-led ways of working to maximise the impact of new CRM and service tools.

We’re now looking for a Head of Data & Insight to lead this change. You’ll shape how data is managed and used across the Motor Neurone Disease (MND) Association — ensuring it’s accurate, secure, and drives decision-making at every level. Leading a skilled team, you’ll oversee reporting, analysis, and compliance, while providing high-quality insight to support our charitable objectives and make a real difference for people living with and affected by MND.

Key Responsibilities:

• Lead, manage, motivate and develop the Data and Insight team to provide expert support across the Association.
• Line manage 3 direct reports.
• Work with stakeholders to set priorities and agree deliverables.
• Oversee workflows to ensure deadlines and service level agreements are met.
• Maintain and continuously improve data quality standards.
• Ensure compliance with legislation including the General Data Protection Regulations.
• Provide guidance on regulatory and data protection matters to directors and senior managers.
• Advise on projects and initiatives, ensuring data and insight are effectively embedded in plans.
• Collaborate with Technology heads and actively contribute to leadership discussions and strategy.
• Support the delivery of the Association’s Digital, Data and Technology strategy.

About You:

• Extensive experience in managing large CRM or care systems, ideally in a fundraising or non-profit setting.
• Proven experience keeping up to date with compliance, data protection and other regulatory legislation.
• Skilled in resolving complex data protection challenges.
• Experienced in campaign and database analysis and management using advanced tools such as MS Dynamics, FastStats and SQL.
• Knowledgeable in customer relationship management principles.
• Able to motivate and develop a high-performing team.
• Collaborative, with the ability to work across teams and influence at all levels.
• Confident in explaining technical concepts in clear, accessible language.
• Advanced problem-solving ability.

About Us:

Our vision is a world free from MND. Our mission is to improve care and support for people with MND, their families and carers. We fund and promote research that leads to new understanding and treatments and brings us closer to a cure for MND. The Association also campaigns and raises awareness so the needs of people with MND, and everyone who cares for them, are recognised, and addressed by wider society.

What We Offer:

• 28 days holiday, increasing to 33 days after 5 years, plus Bank Holidays.
• Access to UK Healthcare, including dental, eyecare, health screenings, and therapies.
• 24/7 GP access via phone and video.
• Life assurance and confidential counselling helplines.
• Salary sacrifice schemes (Cycle to Work, Buy/Sell Annual Leave).
• Access to Benefit Hub for discounts on everyday shopping.
• Enhanced pension scheme.
• Opportunities for training and personal development.
• Hybrid working.

The full job description is available in the candidate pack.

We are committed to equality, diversity, and inclusivity. We work to remove barriers for everyone affected by MND, employees, volunteers, and stakeholders. As part of the Disability Confident Scheme, we guarantee interviews for disabled applicants who meet the role's requirements.

Hybrid Working and Flexibility: This role offers hybrid working, with the expectation to attend the office 1 day per week. We are open to part-time applications or job shares – please indicate your preferred working arrangement in your application.

This is an exciting opportunity for a Head of Data & Insight who wants to make a real difference by ensuring data and insight are at the heart of decision-making. If you are ready to take the next step in your career, we’d love to hear from you.