Data Governance Coordinator (Part Time)

Data Governance Coordinator (P/T)

Position Details

About TREAT-NMD

TREAT-NMD is a global network committed to advancing diagnosis, care, and treatment for those living with neuromuscular diseases. We work collaboratively with experts, patients, and organisations to improve outcomes, accelerate research, and support groundbreaking initiatives worldwide.

Purpose of the Role

The Data Governance Coordinator will play a key role in supporting TREAT-NMD’s data governance activities, with a primary focus on the PaLaDIn project and its Interactium platform. The role will ensure compliance with internal Data Protection, Information Security, and Business Audit requirements to high standards, including ISO27001. The postholder will provide operational support for data governance processes, assist with audits, and contribute to maintaining integrity and security across all data-related activities.

Key Responsibilities

• Support data governance activities for the PaLaDIn project and Interactium platform.
• Assist with internal Data Protection and Information Security compliance.
• Conduct and support business audits to ISO27001 standards.
• Collaborate with internal teams to ensure adherence to data governance policies.
• Provide guidance and support on data protection and information governance.
• Assist in developing and delivering training related to data governance.
• Maintain accurate records and documentation for compliance purposes.

Skills & Competencies Required

• Strong understanding of Data Protection and Information Security principles.
• Familiarity with ISO27001 standards.
• Excellent attention to detail and organisational skills.
• Ability to manage multiple priorities and work independently.
• Strong communication skills for liaising with internal and external stakeholders.

Qualifications and Experience

• Degree or three or more years of equivalent experience in a relevant field.
• Experience in data governance, audits, or compliance.
• Knowledge of Office 365 governance and SharePoint configuration.

Internal and External Relationships

The postholder will be required to form working relationships with a diverse group of people internally and externally. Key contacts include:

TREAT-NMD (Internal)

• PaLaDIn Delivery Manager
• PaLaDIn Research & Project Associate
• PaLaDIn Project Manager
• WP2 Patient Coordinator
• PaLaDIn Tech Lead
• Other TREAT-NMD team members

External

• PaLaDIn project partners, registries, and relevant stakeholders

Other Relevant Information

The postholder will be expected to develop and maintain an up-to-date and thorough knowledge of specific policies, data governance, and any related or associated processes and procedures. They will also be expected to develop an understanding of the rare neuromuscular disease field, as well as the general culture, products, services, and planned future initiatives of TREAT-NMD.

Some UK and international travel, including overnight stays, may be required. The postholder may occasionally be required to work outside normal working hours to deliver their key responsibilities.

Core Values and Behaviours

1. Collaboration – Working together with internal and external stakeholders to achieve the goals of the business and wider NMD community through open communication and establishing trusted relationships.
2. Accountability – We own our actions, decisions, and outcomes. Everyone will follow through on commitments to the highest standards, learning from mistakes and coming up with solutions.
3. Respect – We foster a positive culture where everyone is valued, heard, and treated with fairness, professionalism, and courtesy.
4. Community-focused – We enable the NMD community, supporting the achievement of mutual objectives and keeping the interests of the network at the forefront of everything we do.