More than 1,000 research questions have been submitted to the Stillbirth Priority Setting Partnership (PSP) in response to the call to bereaved parents, health professionals and researchers to identify the most important areas for stillbirth research. By mid July, when the survey closed, more than 600 individuals and groups had completed the online form, with many suggesting multiple questions on different aspects of prevention, management and bereavement care. The response from parents was overwhelming, with this group accounting for 60% of responses.
Work has now started to group the questions to make them more manageable. The next stage will involve checking to see what research has been carried out in the areas highlighted so that the gaps can be identified. Ranking the unanswered questions in a series of workshops with stakeholders will then generate a list of 10–12 priorities. These will be used to set the stillbirth research agenda, including guiding Sands’ own research funding strategy, and, it’s hoped, act as a catalyst for more funding for research in this area.
Dr Alexander Heazell, an obstetrician and researcher into stillbirth, is leading this work, and the James Lind Alliance (JLA), a non-profit-making organisation dedicated to priority setting for health research, is facilitating the project. James Lind was the pioneering Scottish naval surgeon who, 300 years ago, compared six of the many remedies for scurvy in a controlled trial involving 12 men. He was able to demonstrate showed that the men treated with citrus fruits recovered much more rapidly than those given the other ‘treatments’. There‘s more information about James Lind at www.jla.nihr.ac.uk.
The JLA priority setting is used in many areas of health research and is recognised by the Government’s National Institute for Health Research (NIHR), which undertakes to follow the priorities identified. Sands is part of the small steering group of charities, health professionals and researchers that is overseeing the project (see www.stillbirthpsp.org.uk/steering_group.htm), and Sands sponsors the steering group meetings.
Further information on the Stillbirth PSP is available at www.stillbirthpsp.org.uk. To be kept up to date with the progress of the project or to hear about further prioritising activities, such as the workshops to decide the research priorities, go to the contact page on the Stillbirth PSP website.