Haemoglobinopathy Education senior project manager

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 systemic issues identified within care pathways of both sickle cell disease and thalassaemia is the clear and urgent focus for Education and Prevention. Gaps in knowledge, persistent misconceptions and negative attitudes alongside lack of awareness and support in the wider community contribute to poor experience and outcomes for individuals living with the conditions. Improving awareness and understanding of both conditions will lead to informed decisions about conception as well as better health and social outcomes for those affected with the condition, with the aim to prevent serious outcomes of the condition by addressing modifiable factors.

Main duties of the job

The post holder will work with a core hemoglobinopathy education programme team, which will consist of a patient information writing lead, a project manager/policy fellow who provide support, and the education project lead Dr Kesse-Adu - a specialist in managing patients with haemoglobinopathy diagnoses.

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 offer strategic and operational input as well as support, complete a gap analysis and help prioritisation with input from clinicians and the patient community. They will need to consult regularly with, and interact with clinicians, patients and the public.

They will lead on the launch of the completed project, set key performance indicators by which success will be measured.

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 Travel
• 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 Travel
• Inheritance
• Early life
• Childhood
• Transition
• Conception/fertility
• Adulthood Co-morbidities/complications
• Co-morbidities/complications
• Ageing
• Travel

• 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.

·      To organise and minute regular meetings with the project team

• Coordinate with HCC’s, allied health groups, academic institutions as well as patients, carers and public groups to set priorities.
• Ensure project group delivers the completed project to time, with all agreed time point met
• Ensure at the projects end the here is an evidence based, complete set of information or links to appropriate information hosted on an easily accessible platform for the groups noted above on haemoglobinopathies.
• Liaise to ensure all HCCs have an agreed education assignment plan to reduce replication of work.
• 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 delivery this education project
• Maintain some flexibility in the working week to participate in activities with the object of ensuring a high standard of the completed project.
• Organise patient, public and clinician input and review groups, to ensure an accessible and appropriate tools are developed.
• Report regularly to the project lead
• 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.