Abstract

In 2017, the Pregnancy Loss Research Group hosted the International Stillbirth Alliance Conference in Ireland. Over 400 delegates attended, of which one quarter were bereaved parents. Parents who had experienced stillbirth and pregnancy loss were involved at every level of the organisation and delivery of this international scientific conference. A workshop and assembly specifically for parents attending the conference were organised to ensure that their insights were valued and would contribute to future research. Remembrance activities drew on the skills and creativity of parents and healthcare professionals together. This commentary written collaboratively by a parent, a chaplain, a bereavement and loss specialist midwife and a consultant obstetrician, highlights the importance of patients as active participants in scientific research and the key role they play in responding to the global efforts to prevent stillbirth and improve bereavement care. It suggests four key messages that arose from reflection on the conference. These include: the value of active partnership between patients and clinicians, the use of creativity as a unifying expression of grief and as a means to facilitate learning, the value of collaboration with global stakeholders in raising awareness about stillbirth, and the importance of facilitating meaningful patient/public engagement in scientific research.