Debra is a national charity established in 1988 to provide support and drive research into treatments for those living with the rare skin condition, Epidermolysis Bullosa (EB). EB is an extremely painful skin-blistering condition, which leaves the skin as fragile as the wings of a butterfly.
We are a person-led charity, with an ambitious and passionate team, who care deeply about the people we work with. We actively live our core values of Togetherness, Person-Centredness, Passion, Boldness and Integrity, with people at the heart of everything we do.
Reporting to the Head of Advocacy, Research and Policy, the key elements of this role are to manage all aspects of research communication to the EB community of families, researchers and other stakeholders, manage the process for Patient and Public Involvement (PPI) in research, and support the Head of Advocacy, Research and Policy in all other aspects of research. The successful candidate will work as part of a passionate, supportive, patient-centred team. This job description acts as a guide to the role of Research Officer. The role may change to meet the changing requirements of the organisation at any time, after discussion with the post holder.
Main Duties and Responsibilities
· Manage patient and public involvement (PPI) for research and advocacy including organising and facilitating PPI workshops, meetings with researchers, PPI training and maintaining PPI engagement within the charity.
· Produce accessible content on all aspects of EB research for a non-scientific audience.
· Communicate across all stakeholder groups including, national and international EB researchers, healthcare professionals, and other Debras.
· Stay abreast of national and international research in the field.
· Manage and maintain content for the research section of the Debra website and create regular content for Debra's 'X' account.
· Oversee research funding schemes, projects and application support.
· Support the coordination of Debra-led research and advocacy studies.
· Conduct qualitative and quantitative data collection, as well as literature reviews for internal research studies.
· Produce research reports, including PPI workshop reports and an annual research report following Debra brand guidelines.
· Contribute to Debra’s research strategy.
· Support the development and maintenance of standard operating procedures and policies related to research.
· Contribute to national and international research forums and policy development.
· Support the research manager on all tasks relating to research and research advocacy.
Person Specification
Essential
· Degree level qualification (minimum).
· Good knowledge of the health research environment.
· Experience in digital communications and regular user of social media.
· Excellent verbal and written skills and the ability to make complex topics accessible.
· Exceptional project management and computer skills, with excellent attention to detail.
· Flexibility to occasionally travel and work outside standard hours.
· Fluency in written and spoken English.
Desirable
· Experience working in the charity sector.
· Experience in managing and facilitating groups and meetings.
· Experience of PPI.
PERSONAL ATTRIBUTES
· Enthusiasm for the overall vision of Debra.
· Passionate about PPI and developing meaningful PPI relationships.
· Personable, with excellent communication skills and an ability to build relationships and work with professionals at all levels.
· Self-motivated, highly capable of working independently and with a strong work ethic.
· Disciplined, organised and thorough.
· Strong empathetic nature, with a genuine passion and care for people impacted by EB.
BENEFITS
· Annual leave of 20 days.
· Five discretionary leave days: Good Friday, Christmas Eve, working days between Christmas and New Year.
· Employer-matched Pension Scheme
Employee Assistance Programme.
· Opportunity for flexible/hybrid working.
· Bike to Work Scheme.