The Hyperemesis Gravidarum Priority Setting Partnership (HG PSP) has come together following the 2nd International Colloquium on Hyperemesis Gravidarum held in the UK in October 2017. During this event leading HG researchers as well as patients from around the world agreed that setting Research Priorities for the condition was itself a priority and motivation for such a project was strong. Following this event, a subgroup of speakers and delegates with established international links to others in the field agreed to pursue to project and formed the initial PSP.
The aim of the HG PSP is to identify the unanswered questions about HG treatment from patient and clinical perspectives and then prioritise those that patients and clinicians agree are the most important.
The objectives of the HG PSP are to:
Together with patients and clinicians, work internationally to identify uncertainties about the effects of HG treatments and management which have not yet been answered by existing research
Determine by international consensus a prioritised list of those uncertainties, to guide future research
To publicise the results of the PSP among researchers, research commissioning bodies and the general public in order to stimulate research in these areas
The HG PSP is led and managed Caitlin Dean along with a Steering Committee consisting of patients and professionals and facilitated by a James Lind Alliance Advisor, Tricia Ellis. Currently the Steering Committee members include:
Patient Representatives
Clinical Representatives
Organisations and individuals will be invited to be involved with the PSP as partners. Partners are groups or individuals who will commit to supporting the PSP by disseminating the PSP survey and helping the PSP to gather questions and uncertainties of practical clinical importance relating to the treatment and management of the health problem in question. Partners represent the following groups:
people who have had HG
carers and offspring of people who have had HG
medical doctors, nurses and professionals allied to medicine with clinical experience of HG.
Predominately treatment uncertainties will be collected using an online questionnaire however the methods may be designed according to the nature and membership of each organisation, but must be as transparent, inclusive and representative as practicable. Methods may include membership meetings, email consultation, postal questionnaires, internet message boards and focus group work.
Existing sources of information about treatment uncertainties for patients and clinicians will be searched. These can include question-answering services for patients and carers and for clinicians; research recommendations in systematic reviews and clinical guidelines; protocols for systematic reviews being prepared and registers of ongoing research.
The consultation process will produce “raw” unanswered questions about diagnosis and the effects of treatments. These raw questions will be assembled, categorised and refined into “collated indicative questions” which are clear, addressable by research and understandable to all. Similar or duplicate questions will be combined where appropriate and the questions prepared for prioritisation.
The aim of the final stage of the priority setting process is to prioritise through consensus the identified uncertainties relating to the treatment or management of HG. This will be carried out by members of the Steering Group and the wider partnership that represents patients and clinicians. The stages will depend on the number of true uncertainties identified.
Interim priority setting will be conducted as an online survey. Questions will be scored and ranked by participants and the process tracked with relevant details. From here approx. 25 priorities will be retained for the final priority setting meeting which will take place the day before the ICHG 2019 conference in Amsterdam on the 9th October 2019.
Documents
In order to ensure the entire process is transparent the following documents are publicly available for anyone interested to view
