NHSE Haemoglobinopathy Education project Clinical Fellow

Job overview

The haemoglobinopathy education programme is a funded by the health and inequalities team within NHSE and is aimed to locate, develop, create and improve education tools on haemoglobinopathy diagnoses, in a patient-centred way for affected individuals, parents and carers, health care professionals (HCPs) and the public

The post holder will also be required to coordinate and liaise with patient groups, the education leads across all 4 thalassaemia HCCs and also liaise across the 10 sickle HCCs to ensure awareness of the project and maintain engagement from the clinical community involved in patient care. This post is aimed at driven self-directed and highly organised collaborative individual, who has ability to compile, review and write medical information aimed at HCPs and also in lay language aimed at the general public. The post holder will need to consult with and interact with clinicians, patients and the public.

Main duties of the job

The role of Haemoglobinopathy Clinical Fellow will be pivotal in supporting the delivery of the SCD Thalassaemia education project objectives, they will work across a whole projects to support delivery of the completed work. The role will work collaboratively with the rest of the project delivery team with input from the NHSE Healthcare Inequalities Improvement group.  The post holder will be responsible for working collaboratively with haemoglobinopathy clinicians and 14 sickle cell and thalassaemia Haemoglobinopathy Coordinating Centres in England, to complete a gap analysis and secure specialist input, awareness and review of the materials developed.

Detailed job description and main responsibilities

• Working with the project team
• Complete a gap analysis on currently available education materials on haemoglobinopathy diagnoses aimed at the groups/topics listed below:
• Inheritance
• Early life
• Childhood
• Transition
• Conception/fertility
• Adulthood
• Co-morbidities/complications
• Ageing
• Trave
• Develop appropriate education materials for the intended audience covering prioritised areas identified by the gap analysis.
• Ensure at the projects end  there is an evidence based, complete set of information for individuals with haemoglobinopathy diagnoses across the life span covering.
• The post holder should be able to communicate the highly complex medical information to an HCP and lay audience in an accessible manner (verbal, written and numerical).
• Coordinate and collaborate with multiple external stakeholders including HCC network education leads, clinical experts and patient groups and forums

Participate in clinical governance activity to ensure information produced is complete and evidence based

• Support and work collaboratively with the overarching haemoglobinopathy education project team in other areas as deemed appropriate and necessary by the project lead to ensure timely delivery of the project
• Develop and use data, evidence and insights to formulate and drive actions for improvement of sickle cell and thalassaemia services
• Maintain some flexibility in the working week to participate in activities with the object of ensuring a high standard of the completed project.
• Report regularly to the project lead
• To participate in regular meetings with the project team
• Participate in events to launch and publicise the project and as part of this, the post-holder will prepare a report of the completed work, suitable for different audiences including patients, HCCs, the project lead and funders.