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Page 3 of 5
Remote
£45,000 - £50,000 per year, prorated
Part-time (0.8 FTE)
Contract (fixed term to 31st March 2028, which potential for extension)
Job description

Purpose of the post

HDR UK are committed to meaningful involvement and engagement where patients and the public are actively involved in shaping our work and decision-making. Reporting to the Senior Public Involvement and Engagement Manager and matrix managed within the Big Data for Complex Disease team, this is a pivotal role that will maintain and build upon an established strategy and programme of activities embedding the patient and public voice at all stages of work with the Driver Programme.

Your work will also support best practice delivered as part of the Public Engagement in Data Research Initiative (PEDRI), a vital UK-wide multi-stakeholder initiative that aims to facilitate a sector wide shift focused on establishing and advancing good practices for public involvement and engagement (PIE) with data-driven research and statistics.

You will work closely with public members, research and NHS communities, internal colleagues, charity partners, and funders to develop and implement plans for patient and public involvement and engagement.

This is an exciting opportunity for someone who has a passion for meaningful involvement and engagement of patients and the public in research, to shape and influence our work on the safe, ethical and scientifically robust use of data for research into the causes, prevention and treatment of disease.

The successful candidate will have a track record in working with individuals, groups and communities and can communicate complex information in clear, engaging ways. The post holder will have excellent influencing and negotiation skills, experience of working on complex projects with multiple partners and be comfortable with working at pace.  Patient and public involvement and engagement in data-driven research is a growing field. The successful candidate will show a willingness and experience of developing and delivering innovative approaches to involvement where previously opportunities may not have been obvious.

We are particularly interested in candidates who have experience of working with diverse communities and using trauma-informed practices to engage with those having lived experience of a variety of health conditions.

 

Main responsibilities

Big Data for Complex Disease PPIE strategy and delivery:

  • Lead on the delivery of the PPIE strategy for the Big Data for Complex Disease driver programme, with oversight from the Senior PPIE Manager and Senior Programme Manager.
  • Develop and deliver training and support best practice for researchers working with patients and the public on involvement and engagment in health data research.
  • Support member development and growth of the network of patients and public contributors involved in the Big Data for Complex Disease driver programme, including by providing training and guidance on data science and its use in the programme.

Embedding PPIE in our work:

  • Lead and facilitate meetings with public contributors to integrate meaningful PPIE throughout all aspects of our work.
  • Undertake and manage specific involvement and engagement activities, including but not limited to focus groups, engagement events, developing and undertaking surveys, supporting the writing of plain English summaries of projects and their outputs. In collaboration with senior colleagues, support involvement of patients and the public in the governance of our work.
  • Review and provide advice on PPIE elements of research projects ensuring adequate PPIE is incorporated and provide advice and support where needed to researchers. 
  • Develop methods to expand reach and ensure diversity of perspectives and work with the HDR UK Involvement and Engagement team to grow involvement of currently underrepresented and underserved groups in health data science.
  • Build and manage relationships with colleagues within the Big Data for Complex Disease driver programme and relevant partners like the British Heart Foundation (BHF) Data Science Centre, working collaboratively to support and manage involvement and engagement across all areas of work.
  • Work closely with the internal communications colleagues to create and disseminate engaging content (e.g. news stories on outputs and impact, videos, infographics, case studies) on our work and involvement and engagement activities using a variety of communication tools.
  • Horizon scan and liaise with colleagues across HDR UK for opportunities to increase visibility of the institute’s engagement and involvement impact, i.e. through conferences, festivals, journals and other publications.
  • Lead on the recruitment of new public contributors as required. Adapt, develop and provide training for public where necessary identifying training requirements as needed.

Developing PPIE best practice and collaborative working:

  • Work with the Senior PPIE Programme Delivery Manager and the rest of the PPIE Central team to share best practice and examples of successful PPIE practices that could influence our work, including through the Public Engagement in Data Research Initiative (PEDRI).
  • Collaborate with the Senior PPIE Programme Delivery Manager, the PPIE Central team, and the HDR UK’s Institute-Wide PPIE Leads Group to lead public outreach initiatives and other events, ensuring that stakeholders are afforded opportunities to contribute their input and provide feedback. Establish effective working relationships and ‘ways of working’ with strategic partners to maximise opportunities for collaboration in patient and public involvement and engagement.
  • Act as an internal and external ambassador for public, patient and practitioner engagement and involvement.
  • Monitor and report on performance of PPIE across the Programme, make effective use of digital approaches to maximise the ability to collaborate, communicate and continuously learn.

 

Knowledge, skills and experience

Experience

  • Educated to degree level or equivalent
  • Experience of working with patients, carers and members of the public with diverse interests.
  • Experience of working with community organisations and diverse voices
  • Experience of running patient/public involvement activities
  • Experience of developing, implementing and evaluating patient and public engagement and involvement strategies and methodologies, preferably in a research environment
  • Experience of promoting the need and value of engagement and involvement to a wide range of stakeholders and acting as an advocate
  • Experience of writing / developing content for public and research audiences and delivering presentations
  • Experience of demonstrating an understanding of health research and the needs of patients and the public
  • Planning and organisational expertise with a proven track record of delivering challenging projects with multiple partners to deadlines
  • Experience of organising and facilitating a range of events and meetings including: event preparation, chairing of meetings, delivering presentations, use of tools to gather views and feedback, follow-up communications and evaluation
  • An understanding of the public sensitivities of using health data for research

Skills

  • Excellent planning and organisational skills, with the ability to manage complex and multiple areas of work with competing priorities in a fast-paced environment.
  • Evidence of ability to meet tight and challenging deadlines using a flexible and adaptable approach
  • Good influencing and coaching skills.
  • Excellent people and interpersonal skills to build collaborative partnerships across diverse groups and the ability to handle sensitive issues positively.
  • Excellent written and verbal communication skills with the ability to communicate effectively and confidently with different groups of stakeholders and people at all levels.
  • Able to grasp the complexity of work across HDR UK and process complex scientific information to communicate it in a way that is clear, engaging and inspires the public to get involved.
  • Strong analytic skills with the ability to frame problems and solutions in a logical manner.
  • Ability to work autonomously and make decisions without supervision.
  • Ability to work collaboratively and as part of a multi-disciplinary team.
Posted by
Health Data Research UK View profile Organisation type Registered Charity Company size 51 - 100
Posted on: 28 May 2025
Closing date: 11 June 2025 at 17:00
Tags: Project Management, Data Science, Engagement / Outreach, Health / Medical, Research, Events / Activities

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