The Human Phenome Science Priority Area is an activity of Health Data Research UK, the UK’s national health data science institute. It aims to develop a National Phenomics Resource – a library of tools and machine-readable rules that can be used to define human health conditions from electronic health records (EHR) (known as phenotypes) for research so that information will help clinicians make decisions about diagnosis and treatment.

A second strand of activity is looking at how researchers can create tools that will be able to make use of information held within the EHR in written form that is not easily available for research, and develop new methods to analyse these data. This work includes many sub-projects, across several universities across the UK (including University College London, King’s College London, London School of Hygiene and Tropical Medicine, Birmingham, Nottingham, Oxford and Edinburgh).

How will the lay members be involved?

The Phenomics for People group was established to discuss public involvement in the Phenomics priority. To help us shape delivery of our strategy, we are keen to recruit a small number of members of the public who have experience in specific areas as involvement ambassadors.

In the preparatory phase, which runs between now and June 2021, you will help us:

  • build this programme from the ground up
  • gain commitment from researchers
  • develop recruitment, induction, professional development and retention strategies for the public contributors who will work directly with researchers
  • operationalise our involvement strategy for Phenomics
  • develop the plan for the future after March 2023, when this current workplan ends

Find out more in the Role Profile by 14.00pm, Wednesday 5 March 2021

How to get involved

Email Natalie Fitzpatrick, PPIE Coordinator for the Human Phenome Priority ( by 14.00pm on Friday 5 March 2021 with:

  • Your name, email address and preferred phone number
  • A statement of no more than 500 words outlining
    • Your relevant experience (see the role profile for the types of experience we are looking for)
    • The personal skills and qualities you bring that would make you the right person for this role
    • Your reasons for wishing to take up this opportunity
    • What you think the keys to success would be either in engaging researchers in involvement activity or equipping public contributors to be involved in health data research. If you are keen to discuss both, you may extend your statement by 100 words.

You may, if you wish, attach a CV but this will not be a formal part of the assessment of your submission.

All applications will be acknowledged, and shortlisted applicants will be invited to an interview, over MS Teams, on 15 March 2021. If you are unable to access MS Teams or have any special requirements please indicate this when you submit your application to we can make alternative arrangements.