Clinicians and research leaders’ views on barriers to involving children and families in research

Within the UK, 32 out of every 10,000 children are living with a life-limiting condition or life-threatening illness (LLC/ LTI).

Research, from genetic studies to drug trials is vital to improving care for these children and their families, but the inclusion of this vulnerable population into research studies has been difficult.

Barriers to Research Access: Voices, Experiences, and Solutions (BRAVES) is a CLAHRC study focusing on improving access and participation in research for children and young people with LLC/LTI and their families.

A new BITE – a postcard “need to know” summary of our published research – shares the perceptions of clinicians and research leaders on their perceptions of the barriers preventing children and their families becoming involved in research.

The BRAVES team surveyed palliative care clinicians, often “gatekeepers” to children and their families getting involved in research asking them

‘In your experience, what have you found to be the biggest barriers to palliative care research with children?’

We also consulted Chief Investigators (CIs) – leaders of NIHR research studies involving CYP with LLC/LTI and their families. CI’s were invited to complete an anonymous, web-based questionnaire and three key barriers to research were emerged, alongside four potential solutions.

 

Evaluating a digitally-enabled care pathway for Acute Kidney Injury

A new publication highlights our work in evaluating a new patient pathway with the potential to provide clinicians with real-time data on inpatients at risk of Acute Kidney Injury.

AKI is common (affecting up to 20% of UK acute hospital admissions);  associated with significant morbidity and mortality, and expensive – excess costs to the NHS in England alone may exceed £1 billion per year.

Researchers at the Royal Free Hospital (RFH), part of London’s Royal Free London NHS Foundation Trust (RFLFT) have developed a digitally-enabled care pathway for inpatients, incorporating  a mobile software application – the “Streams-AKI” app – that “reads” routinely collected serum creatinine data in hospital inpatients and alerts health professionals where a patient is at risk of AKI.

We have published our protocol for this evaluation, and a postcard-style “need to know” summary – or BITE – of our research plans. We’ll measure its success for patients (in terms of speed and effectiveness of their diagnosis and care), NHS staff and clinicians (to find out what they think of the pathway) and for the NHS in terms of patients’ length of stay and costs to the service.

The protocol and BITE will interest NHS staff and clinicians working in renal care, as well as those interested in the potential of technology to improve detection and diagnosis via routinely collected data