What areas does the Miscarriage PSP cover?
For this PSP, we are focusing on the questions that remain unanswered about pregnancy loss from a positive pregnancy test to a pregnancy loss before survival is possible. These include questions about how miscarriage is caused in the first place, as well as how it might be prevented, how miscarriage is managed, and the care that is available to women when they miscarry. 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:

  • Women who have had a miscarriage.
  • People affected by miscarriage e.g partners, family members, friends, colleagues.
  • Professionals involved in caring for women who have experienced miscarriage – doctors, nurses, sonographers and other professionals with experience of miscarriage.
  • Professional bodies, patient groups, charities and other organisations involved with miscarriage.

 

What questions can I include in the survey?

We are asking you to tell us the question(s) about miscarriage 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:

miscarriage causes, prevention and management.

And can include questions about bereavement support and the emotional aspects surrounding pregnancy loss.

 

What areas does the Miscarriage PSP cover?
For this PSP, we are focusing on the questions that remain unanswered about pregnancy loss from a positive pregnancy test to a pregnancy loss before survival is possible. These include questions about how miscarriage is caused in the first place, as well as how it might be prevented, how miscarriage is managed, and the care that is available to women when they miscarry. This would include all medical and physical aspects of care but could also cover psychological, emotional, social, and practical support.

 

What do you mean by management?
We mean how miscarriage is dealt with in the healthcare setting by healthcare professionals, including anything that helps to understand why a miscarriage 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 miscarriage 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 miscarriage), in order to influence the prioritisation of future research in that area.

 

What is the Miscarriage Priority Setting Partnership (PSP)?

It is a project involving a number of different individuals and organisations which aims to establish what miscarriage research topics are important from both parent and clinical perspectives. Dr Matthew Prior from the University of Nottingham has coordinated a large number of patient and clinical organisations to come together to form the Miscarriage 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 miscarriage. We are particularly looking to hear from women and all those affected by miscarriage, and healthcare professionals.

 

Who is involved in the partnership?

The miscarriage PSP is administered and coordinated by Dr Matthew Prior at the University of Nottingham. In addition, there are several other organisations represented on the Steering Group, which will oversee the partnership: The Miscarriage Association, Tommy’s the baby charity, Royal College of Obstetricians and Gynaecologists Women’s Voices Panel, Royal College of Nursing, The Association of Early Pregnancy Units, The Royal College of General Practitioners, Scottish Care & Information on Miscarriage. The Steering Group is chaired by an independent consultant from the James Lind Alliance. So far, over 20 additional organisations – who can reach women affected by miscarriage and the healthcare professionals from medicine, nursing and ultrasonography (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 women and those affected by miscarriage 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.

 

How did the partnership come about?

The Miscarriage PSP was originally explored as part of a programme of work involving women in research proposals into topics in reproductive medicine and early pregnancy (The PREPARE group). Following discussion with various professional bodies and the James Lind Alliance, it was decided to focus the scope of the PSP to miscarriage. 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 miscarriage 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 miscarriage research brings the greatest possible benefit to people who are affected by miscarriage, both women and medical staff, by identifying what unanswered questions are of the greatest importance to them.

 

Why do we need to ask for both women’s and clinician’s 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 miscarriage PSP is going to bring together the shared views of patients (ie women and those affected by miscarriage) and clinicians in a very powerful way and highlight exactly what needs addressing in miscarriage research to make the biggest difference.

 

How is miscarriage research currently funded / prioritised?

Researchers and research funders currently determine which areas of miscarriage are researched. Often this is done with reference to current literature – to identify where the gaps in knowledge are. And sometimes with input from women 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 Summer 2015 to November 2016 (when the final report is expected to be published). The current timeline is:

  • January 2015 – PSP accepted by James Lind Alliance.
  • July 2015 – Inaugural meeting of core steering group and draft terms of reference and protocol.
  • January 2016 – Collate questions and uncertainties from first survey. Generate long list.
  • May 2016 – Prioritisation survey open.
  • September 2016 – Final prioritisation workshop.
  • December 2016 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 women and those who have been affected by miscarriage 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 miscarriage. 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.