Description
Title: A consultation exercise examining need for, requirements of and barriers to development of Paediatric Sepsis Registry in Northern Ireland.Objectives: There is an urgent need for Paediatric sepsis registry within the UK. Our objective was to liaise with stakeholders and describe key components of a registry and assess any barriers to development within UK and Ireland.
Methods: We formulated criteria to identify our key stakeholders. We identified organisations and individuals who; had experience treating sepsis, were involved in development of treatment recommendations and had experience in registry development. We contacted charities, youth and adult public groups to assess public understanding and burden levels surrounding paediatric sepsis.
We established key stakeholders in Sepsis Registry
- UK Sepsis Trust
- British Society for Antimicrobial Chemotherapy
- Royal College of Paediatric and Child Health
- Royal College of Emergency Medicine
- Northern Ireland Hospital trusts
- Northern Ireland Politicians
- Pan London Paediatric Sepsis Network
Once stakeholders were identified we held virtual meetings to discuss need for and barriers to, development of paediatric sepsis registry.
Based on data from consultation phase we extracted key difficulties likely to be faced when developing a paediatric sepsis registry.
Results:
We contacted each of these groups individually to invite them to attend virtual meetings and to gain understanding from each group's perspectives.
We received responses from the groups listed below.
- UK Sepsis Trust
- British Society for Antimicrobial Chemotherapy
- Northern Ireland Hospital Trusts
- Northern Ireland Politicians
- Generation R Group
- Local NI Parent Group
Based on our consultations with each of the groups that responded we evaluated the major barriers to development of a Paediatric sepsis registry. These major barriers included consent, funding, data collection, storage and linkage alongside varied definitions of sepsis.
In addition, we discovered during the course of our consultation that Northern Ireland is uniquely capable of developing a registry; combining the Northern Ireland Electronic Care Record system, Ambulatory Care Record and clinical notes (routine data collection) allows for excellent patient tracking. This alongside a united political drive to improve healthcare for children makes Northern Ireland an ideal development area for a paediatric sepsis registry.
Furthermore, the consultation phase of our research allowed us to refine the goals of any sepsis registry and garner broad support across charities, healthcare professionals, politicians and the public.
Conclusion: There are a number of barriers to be faced before a functioning Paediatric sepsis registry will yield any significant results.
However, given the urgent need and broad support for the development of registry we urge the government, local bodies and research groups to combine resources and focus on development of a functioning registry to allow personalization and improvement of care for patients.
| Period | 20 May 2024 → 24 May 2024 |
|---|---|
| Event type | Conference |
| Location | Copenhagen, DenmarkShow on map |
| Degree of Recognition | International |