Abstract: The practice of patients as partners in clinical research has been a commitment of the Pregnancy Loss Research Group (PLRG) based at the INFANT Centre at University College Cork and Cork University Maternity Hospital (CUMH). In September 2017, the PLRG hosted the International Stillbirth Alliance Conference in Ireland. Over 400 delegates attended the conference, of which one quarter were bereaved parents. From the outset, parents who had experienced stillbirth and pregnancy loss were involved at every level of the organisation and delivery of this international scientific conference. A sub-committee of parents and staff was established to focus specifically on the participation of parents at the conference. The scientific programme was organised to ensure equal and meaningful participation of parents, clinicians and researchers. Particular attention was given to the voice of parents. Recognising that research, practice and policy needs to be informed by the experience of parents, a workshop and assembly specifically for parents attending the conference were organised to ensure that their wisdom and insights were valued and would contribute to future research. Remembrance activities drew on the skills and creativity of parents and healthcare professionals together. Hundreds of heart shaped mementoes were handmade by clinicians and parents for the conference as a powerful symbol of remembrance for stillborn babies around the world. 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.
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Categories: journal article researchers general principles of good practice ethical issues involving seldom heard groups
Date Entered: 2019/02/15
Date Edited: 2019/02/15