HSIB recommends that NHS England identifies and implements a system for sharing clinical information about patients with sickle cell disease to improve access to this information for clinicians, and reduce the risk of a patient’s sickle cell disease not being treated consistently.
National Institute for Health and Care Research (NIHR)
HSIB recommends that the National Institute for Health and Care Research assesses the priority and feasibility of commissioning research into the management of patients with sickle cell disease, encompassing the requirements of patient-controlled-analgesia (pain relief) pumps. This will contribute towards building an evidence base for the generation of national clinical guidance and will reduce unnecessary variance in treatment for patients with sickle cell disease.
The National Institute for Health and Care Research (NIHR) funds health and social care research that improves people’s health and wellbeing. Working with those who use, plan and deliver health services in the UK, we identify and prioritise important topics to fund through specific calls for research.
Following referral from HSIB, the safety recommendation for ‘Invasive procedures for people with sickle cell disease’ will be considered through the NIHR’s established research commissioning processes with the aim of developing practical and deliverable research calls which will provide the evidence needed by decision makers. After an initial ‘in-house’ assessment of the topic to determine what is already known (the existing evidence base), we will engage with a wide range of individuals with a broad spectrum of knowledge, skills and expertise to develop research question(s) which address outstanding uncertainties.
Our engagement will include patients, members of the public, academics, subject experts, clinical staff, service managers and public health professionals. The research question will then be considered by the NIHR’s relevant programme specific prioritization committees who review and advise on the development of NIHR commissioned calls and make recommendations about future advertisements.
Actions planned to deliver safety recommendation:
1) Identify tractable research question and develop NIHR call specification, by approximately October to December 2023. This activity will include an in-depth review of the current evidence base which may identify existing research studies which already address the evidence gap/question and therefore negate the need for further primary research.
2) NIHR call specification considered by relevant NIHR Prioritisation Committee, by approximately January 2024.
3) If prioritised, call specification sent for external peer review, by February to March 2024.
4) If prioritised, call specification sent for external peer review, by June 2024.
5) Call advertised (if prioritised by the above), by August to September 2024. This date maybe subject to change.
Response received on 18 September 2023.