The Role
Your role as a Postdoctoral Research Associate will focus on the Patient and Public Involvement and Engagement (PPIE) work package (WP) of the LifeArc Centre for Acceleration of Rare Disease Trials (ARDT). This is an exciting opportunity for a qualitative researcher to advance their research experience and career development working on this highly innovative, interdisciplinary project. Working in the John Walton Muscular Dystrophy Research Centre (JWMDRC) at Newcastle, you will be given scope to shape key aspects of the project’s research design. You will co-ordinate with part-time RAs and PPIE experts across Newcastle University, Birmingham University, Queen’s University Belfast, and beyond on our key PPIE Work package. You will work directly with the ARDT Lived Experience Advisory Panel (LEAP) to ensure meaningful patient and public involvement and engagement across the project and within Newcastle University more widely.
As part of the role you will be supported to develop innovative research methodologies, publish articles both independently and with other team members, and establish networks with other scholars. The project includes funding for training, regular travel, and to support fieldwork. As one of three Research Associates on the project, you will have responsibility for the Newcastle-based fieldwork and for co-ordination of activities across the WP. There will be scope for you to shape how that fieldwork will develop, alongside working with patient advocacy representatives and the LEAP, who will inform all aspects of research design, and a Young People’s Advisory Group (YPAG).
The ARDT project is establishing a UK-wide rare disease clinical trials platform to enable faster and more efficient delivery of drug and treatment trials. Within the PPIE work package, the focus is on (i) conducting research on patient participation in rare disease trials, and (ii) establishing and supporting the involvement of people with lived experience of rare diseases (PLERD) across the project. Working closely with colleagues and PPIE experts at Birmingham University and Queen’s University Belfast, as well as patient advocacy organisations such as Genetic Alliance UK, the team will use qualitative and participatory approaches to explore barriers to participation and embed co-design and co-production in all aspects of the Centre’s work. You will be based in the John Walton Muscular Dystrophy Research Centre within the Translational Clinical Research Institute of Newcastle University, joining an interdisciplinary team led by Cathy Turner, Victoria Hedley, and Professor Dave Jones, with strong links to the ARDT’s Equality, Diversity and Inclusion (EDI) activities.
This post is fixed term for a period of 44 months (until 31 August 2029) depending on the agreed start date.
For informal enquiries contact:
This post will be subject to a Disclosure and Barring Service (DBS) check
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As part of our commitment to career development for research colleagues, the University has developed 3 levels of. These profiles set out firstly the generic competences and responsibilities expected of role holders at each level and secondly the general qualifications and experiences needed for entry at a particular level.
Key Accountabilities
1. Although working under the general guidance of an academic or Principal Investigator, the postholder will contribute ideas, including enhancements to the technical or methodological aspects of their studies, thus providing substantial 'added value'
2. Develop and carry out the specified project using appropriate techniques and equipment as outlined in the personal requirements
3. Determine appropriate methodologies for research, with advice and support where required
4. Contribute to grant applications submitted by others and in time develop own research objectives and proposals for funding
5. Begin to write, with appropriate support, proposals for individual research funding or, where funders do not permit this, contribute to the writing of collective bids
6. Assess research findings for the need/scope for further investigations
7. Contribute to the writing up of their research for publication and dissemination, either through seminar and conference presentations or through publications
8. Present research findings, either at conferences or through publications in reputable outlets appropriate to the discipline
9. May be involved in the supervision, with guidance, of final year undergraduate research projects and in providing support to postgraduate research students or Research Assistants
10. Will need to work with the support staff and, on occasions, with undergraduate and postgraduate students, and interact intellectually with other academic members of the Institute
11. May contribute to events celebrating the public engagement of science/social sciences/humanities
12. Develop an awareness of University structures, policies and procedures and relevant issues in the higher education, research, social and political environment
13. Design, develop and conduct qualitative research activities, including focus groups, “town hall” meetings, and deliberative conversation workshops with PLERD, patient advocates, and ARDT researchers, exploring social and ethical issues around trial design and delivery
14. Support and co-ordinate the activities of the LEAP and the YPAG, including establishing support mechanisms, organising meetings and communications, processing reimbursements, and providing capacity-building opportunities
15. Contribute to the creation and delivery of training programmes for ARDT staff and platform users on PPIE in rare disease research, in line with NIHR guidelines, and assist in mapping regulatory hurdles and bottlenecks in rare disease trials from a patient-priority perspective
16. Collaborate across scientific, clinical, EDI work packages to ensure that PPIE principles are embedded throughout ARDT research, and that outcomes from PPIE research are translated into improved practice across Newcastle University’s rare disease community
17. Disseminate project findings through academic publications and presentations, engagement with the wider rare disease patient community in the UK and internationally, and contribution to the project website and social media communications
The Person
Knowledge, Skills and Experience
18. Ability to work well as part of a team and rapidly acquire new skills
19. Detailed subject knowledge in the relevant areas of research, e.g. PPIE and equality, diversity and inclusion in (rare) disease; related barriers to participation in health research; health inequalities
20. Likelihood of advanced skills directly related to the research projects
21. High level of analytical and problem-solving capability
22. Ability to communicate complex information with clarity and to encourage the commitment of others
23. Experience of research with clear transferable skills and some experience or awareness of the research environment
24. Presentations at conferences and/or high-quality publications
25. Background of research within one of the following: Science and Technology Studies (STS) in health, applied health research, bioethics, or a closely related discipline
26. Experience of planning and conducting qualitative research, including participatory and deliberative methods
27. Demonstrated organisational skills in planning and delivering research-related or public engagement events
28. Research interests aligned with the project’s themes, such as PPIE, EDI, new health technologies, or health inequalities
29. Experience of writing or contributing to academic publications
Desirable
30. Experience of working with children and young people, including those with health conditions
31. Knowledge and understanding of challenges facing clinical research in rare diseases
32. Experience of facilitating or contributing to public events and community engagement activities
Attributes and Behaviour
33. Ability to work independently and as part of a team
34. Clear commitment to interdisciplinary research
35. Ability to travel and undertake fieldwork around the UK
36. Commitment to EDI
Qualifications
37. A PhD in Sociology or related discipline
Newcastle University is a global University where everyone is treated with dignity and respect. As a University of Sanctuary, we aim to provide a welcoming place of safety for all, offering opportunities to people fleeing violence and persecution.
We are committed to being a fully inclusive university which actively recruits, supports and retains colleagues from all sectors of society. We value diversity as well as celebrate, support and thrive on the contributions of all of our employees and the communities they represent. We are proud to be an equal opportunities employer and encourage applications from individuals who can complement our existing teams, we believe that success is built on having teams whose backgrounds and experiences reflect the diversity of our university and student population.
At Newcastle University we hold a gold award in recognition of our good employment practices for the advancement of gender equality. We also hold a Bronze award in recognition of our work towards tackling race inequality in higher education REC. We are a employer and will offer an interview to disabled applicants who meet the essential criteria for the role as part of the offer and interview scheme.
In addition, we are a member of the Euraxess initiative supporting researchers in Europe.
Requisition ID: 28687