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What areas does the Stillbirth PSP cover?

For this PSP, we are focusing on the questions that remain unanswered about babies that are stillborn late in pregnancy. These include questions about how stillbirth is caused in the first place, as well as how it might be prevented, how stillbirth is managed, and the care that is available to parents when their baby dies. This would include all medical and physical aspects of care but could also cover psychological, emotional, social, and practical support.

Am I eligible to take part in the survey?

If you fall into any of the following groups, we’d like to hear from you:

  • Parents affected by stillbirth
  • Professionals caring for those affected by stillbirth
  • Clinical scientists or healthcare professionals working in stillbirth research
  • Bereaved family member or friend
  • Anyone affected by stillbirth.

What questions can I include in the survey?

We are asking you to tell us the question(s) about stillbirth late in pregnancy that you haven’t been able to find the answers to. All you have to do is write a sentence or two about whatever it is. Your questions can relate to anything on:

  • stillbirth causes, prevention and management.
  • And can include questions about bereavement support and post-natal care for parents.

What do you mean by management?

We mean how stillbirth is dealt with in the healthcare setting by healthcare professionals, including anything that helps to understand why a stillbirth may have occurred (eg clinical tests). This could cover (but is not limited to) practical, medical, or emotional issues.

Does it matter if I don’t know whether my question has been researched or not?

No. We are asking for questions that are unanswered for you. We’ll check whether your question has been answered by research or not. We would much rather you asked your question – whatever it is. If your question has been researched, and if others have had the same challenge in finding the answer, the answer needs to be more accessible. By highlighting these gaps, this will help us identify areas where communication needs to be improved. This will be a further way in which this project can improve the care and support that people affected by stillbirth receive.

Can I take part in helping to prioritise the questions after the survey closes?

Yes you can. If you would like to be kept up to date with the progress of the project and/or would like us to get in touch with you to let you know about further prioritising activities, such as the workshops where we will decide our ‘top ten’ research priorities, please go to the contact page as above. Or you can leave us your details when you complete your survey.

What is the James Lind Alliance?

The James Lind Alliance (JLA) is a non-profit making initiative which is funded by the National Institute of Health Research (NIHR). It provides a “tried-and-tested”, fair and rigorous process to help patients and clinicians work together to agree which are the most important treatment uncertainties affecting their particular interest (in this case stillbirth), in order to influence the prioritisation of future research in that area.

What is the Stillbirth Priority Setting Partnership (PSP)?

It is a project involving a number of different individuals and organisations which aims to establish what stillbirth research topics are important from both parent and clinical perspectives. Dr Alexander Heazell from the Maternal and Fetal Health Research Centre at the University of Manchester has coordinated a large number of parent and clinical organisations to come together to form the Stillbirth PSP with the support of the James Lind Alliance. This means that for the first time, people directly affected will get the chance to have their say in setting research priorities for stillbirth. We are particularly looking to hear from parents who have been bereaved, and healthcare professionals.

Who is involved in the partnership?

The stillbirth PSP is administered and coordinated by Dr Alexander Heazell, Maternal and Fetal Health Research Centre, University of Manchester. In addition, there are several other organisations represented on the Steering Group, which will oversee the partnership: Sands (the Stillbirth and Neonatal Death Charity), National Maternity Support Forum, Tommy’s the baby charity, Holly Martin Stillbirth Research Fund, British Maternal-Fetal Medicine Society, Royal College of Midwives, Department of Health, and the British Paediatric and Perinatal Pathologists’ Association. The Steering Group is chaired by an independent consultant from the James Lind Alliance. So far, over 20 additional organisations – who can reach parents affected by stillbirth and the healthcare professionals from obstetrics, midwifery and pathology (the three most relevant clinical disciplines) who care for them – have pledged their support for the PSP.

Can other organisations still get involved?

Yes. We are keen to hear from any organisations who can reach parents affected by stillbirth and the healthcare professionals who care for and support them. We want to make this partnership as inclusive as possible.

How can organisations and the public find out more?

For more information or to get involved, please go to the contact page as above.

How did the partnership come about?

The Stillbirth PSP was originally explored as part of a programme of work investigating whether increased awareness and better management of reduced fetal movements was able to reduce stillbirth. A preliminary meeting was held in Manchester in December 2012 when a PSP for reduced fetal movements was proposed. Following discussion with various professional bodies and the James Lind Alliance, it was decided to broaden the scope of the PSP to late stillbirth. The James Lind Alliance is an organisation that facilitates priority setting for research questions, and will help to support and manage the project.

What do you hope to achieve?

We hope that the results of the project will shape the stillbirth research agenda and act as a catalyst for more funding opportunities for research in this area.

Why are you doing this?

The aim of the partnership is to ensure that future stillbirth research brings the greatest possible benefit to people who are affected by stillbirth, both parents and medical staff, by identifying what unanswered questions are of the greatest importance to them.

Why do we need to ask for both patients’ and clinicians’ ideas?

Research on the effects of treatments and how different health conditions are managed often overlooks the shared interests of patients, carers and clinicians. As a result, questions they all consider important are not addressed and many areas of potentially important research are therefore neglected. The JLA exists to help address this imbalance. Even when researchers address questions of importance to patients and clinicians, they often fail to provide answers that are useful in practice. Another purpose of the JLA therefore, is to address the mismatch between what researchers want to research, and the practical information that is really needed by patients and clinicians every day. The stillbirth PSP is going to bring together the shared views of patients (ie parents) and clinicians in a very powerful way and highlight exactly what needs addressing in stillbirth research to make the biggest difference.

How is stillbirth research currently funded / prioritised?

Researchers and research funders currently determine which areas of stillbirth are researched. Often this is done with reference to current literature – to identify where the gaps in knowledge are. And sometimes with input from parents and healthcare professionals – although never in such a thorough and systematic way as will be achieved through this partnership.

How long will the project take? What is the timeline?

From official launch of the partnership to the report findings, approximately 15 months, from Autumn 2013 to February 2015 (when the final report is expected to be published). The current timeline is:

  • June 2013 – PSP accepted by James Lind Alliance.
  • August 2013 – Core steering group formed and draft terms of reference and protocol.
  • November 2013 – Inaugural meeting of core steering group.
  • December 2013 - March 2014 – Survey question piloted with parents and professionals.
  • February 2014 – Stakeholders invited to take part.
  • March 2014 – Final version of survey agreed.
  • May 2014 – Launch of website and first survey to generate uncertainties.
  • July 2014 – Collate questions and uncertainties from first survey. Generate long list.
  • November 2014 – Prioritisation survey open.
  • January 2015 – Final prioritisation workshop.
  • February 2015 – Follow-up workshops to formulate research questions.
  • March 2015 onwards – Manuscripts submitted for publication. Uncertainties entered into DUETS. Conference presentations.

Why will this project take so long?

We want to involve as many people as possible in this project and this means allowing sufficient time to reach out to parents who have been affected by stillbirth and the busy healthcare professionals that support them. In addition to this, it will take several months to collate the research questions generated by the survey and identify gaps in knowledge, before prioritising these questions systematically to identify areas for future research.

How many survey responses are you hoping to get?

It is difficult to predict the response we will receive, as nothing like this has been done before in stillbirth. But other partnerships have received a fantastic response, generating hundreds if not thousands of unanswered research questions!

Who was James Lind?

Three centuries ago, sailors were dying of scurvy. There were many uncertainties about the effects of treatments that were being used at the time. A Scottish naval surgeon, James Lind, decided to confront these uncertainties by comparing six of the different remedies in use at that time in a controlled trial amongst 12 men. By conducting this first ever clinical trial, James Lind showed that patients treated with citrus fruits recovered much more rapidly than patients given other treatments. You will find links to much more information about him at www.jla.nihr.ac.uk.

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