Job Opportunity - Head of Patient Data

Salary: £60,000 - £65,000 p/a
Closing date: 19 January 2024
Location: Hybrid

We are looking for a Head of Patient Data (HoPD), to drive and deliver the development, launch and implementation of a new DMD Patient Data Platform. 


About the role

Embedded in Duchenne UK’s Research and Development team, in the short term, the HoPD will be responsible for leading, managing and delivering this new, high-profile, strategic, and technical project, and leading on this new area of focus for the charity.

In the medium to long-term, the HoPD will be responsible for developing and sustaining the DUK data strategy and delivering the DUK’s data collection and data access operations, through best-in-class technology and resources to support a variety of projects across the DMD clinical research and care, R&D and market access landscape.

They will work closely with the Director of Research and Development (R&D) to ensure alignment to DUK wider R&D strategy and with the Head of Technology to leverage design and technology expertise in the team. They will also work collaboratively across the organisation to support the charity’s mission to end the devastating impact of DMD. The HoPD will report to the Director of Research and Development and in future have responsibility to line manage 1 or 2 people in their line of work.

About Duchenne UK


Working for Duchenne UK

We are a friendly, energetic, and determined team. As we are led by two parents of boys who live with DMD, our team has a very strong feeling of contribution to our mission.

We prioritise team building and wellness through an annual offsite Team Away Day and an annual offsite Wellness Day, alongside social activity throughout the year.

We operate a hybrid working week, to balance our team-based culture with a positive home-life. In the summer months of July and August, staff benefit from ‘Summer Fridays’, allowing them half days on Fridays (pro rata’d for part time staff) to enjoy the long summer weekends.

Applying for this job

Please send us a copy of your CV. In addition, please answer the following questions, with a maximum of 300 words per question. You can send us a short film with your answers if you prefer or let us know if you would like to give us this information in a different way.

  1. Please tell us why you would like to work for DUK.
  2. In the job description, we have highlighted a range of experiences and skills we think
    we need. Please describe how you have demonstrated these in your career to date.
    Please give us practical examples. It’s ok to use experiences from outside of paid
    work, including experiences you may have had in your personal life.
  3. If you think you have other qualities, we have not mentioned but which you think
    suit this role, please let us know. We want to know some of the things you have done
    and the experiences you’ve had, and what you think they have taught you.
  4. Tell us one thing that really excites you about this role. If you would like to discuss
    the role, please contact [email protected]
  5. Please email your applications to [email protected] by 19 January 2024.


View and download the job description.