The National Institute for Health Research (NIHR) is seeking parents whose baby was stillborn or died neonatally to comment on research applications. They would particularly like to hear from parents interested in reviewing funding applications looking at 'minimally invasive autopsy for foetuses and children based on a combination of post-mortem MRI and endoscopic autopsy examination'.
At Sands, we know that good-quality research is crucial to reduce the numbers of babies dying and help bereaved parents receive the best care. We fund some studies directly, we recruit participants for some, and we support some researchers’ applications for funding. Increasingly we are working with researchers who want to get the views of people affected by stillbirth and neonatal death on their research ideas (called PPI, or Patient and Public Involvement). And organisations that organise and fund research are looking for help from the public too.
The National Institute for Health Research (NIHR) Evaluation, Trials and Studies Coordinating Centre (NETSCC) is a funding organisation that identifies what NHS research needs to be done and the best people to do it. And when making these decisions, they take into account the views of people affected by the area of health. NETSCC has a 'bank' of lay people with personal experience in different areas, who are able to comment on applications for research funding. And they would like to include some bereaved parents whose baby was stillborn or died neonatally. In particular, at the moment they are looking for people to review applications relating to 'minimally invasive autopsy for foetuses and children based on a combination of post-mortem MRI and endoscopic autopsy examination' – using imaging methods on foetuses and children to carry out post mortems (endoscopy involves using a long narrow tube with a light and a video camera on the end to look into different places in the body). While you certainly don't need any medical or scientific background to do this, you do need to be prepared to read the applications and use your experience to comment. Written guidance is provided.
Sands is not involving itself in the recruitment process to avoid potential conflicts of interest as we are sometimes named as co-applicants on applications for funding; for this reason Sands' employees are not eligible to become NIHR reviewers in this health area. Sands members can volunteer to become reviewers, but should indicate to the NIHR that they are members of Sands. For more information about the NIHR and its work click here. To register your interest in becoming a reviewer or to find out more, please contact Heidi Surridge at email@example.com