Research Priorities for Pregnancy Hypertension: A UK Priority Setting Partnership with the James Lind Alliance

For which topic were research priorities identified?

pregnancy hypertension

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

Current research within hypertensive disorders of pregnancy is broad, exploring epidemiology, prediction, prevention, diagnosis, management and long-term implications for maternal and perinatal health. However, there is often a mismatch between research priorities identified by patients, clinicians and researchers.

What was the objective?

to identify research priorities for hypertensive disorders of pregnancy from individuals with lived experience and healthcare professionals

What was the outcome?

a ranking list of 10 research questions

How long did the research prioritization take?

October 2018 - June 2019

Which methods were used to identify research priorities?

JLA method

How were the priorities for research identified exactly?

Step 1: setting up PSP: forming steering group, confirming scope of the PSP. Step 2: identifying clinical uncertainties: via survey: participants were asked to write up to three questions that they wanted answered by hypertension in pregnancy research, additionally steering group identified uncertainties that had previously been reported, in total 764 questions submitted. Step 3: data processing: all questions reviewed, grouped into 9 categories, duplicate questions removed, each steering group member was assigned a theme and reviewed all questions within the theme to synthesize summary questions, 50 summary questions formulated, steering group agreed that the 50 summary questions should be put forward for interim ranking based on being representative of the wider questions submitted, not answered by existing research, and ensuring that all themes were included. Step 4: interim ranking: participants were asked to identify the top 10 questions they felt to be most important, then asked to identify their top three summary questions from within their top 10, resulting in the 25 most highly ranked questions taken forward for final prioritization. Step 5: final prioritization: workshop: small group discussions, small group rankings, new small groups formed, second round of ranking, aggregate ranking from second round presented to whole group, whole group discussed results and reached consensus on final ranking

Which stakeholders took part?

Patients and healthcare professional. Survey: 278 participants: 65% women with lived experience of pregnancy hypertension, 3% family/friends, 26% healthcare professionals (obstetricians, midwives, general practitioners, pediatricians, neonatologists, physicians), 7% researchers. Interim ranking: 155 participants: 56% individuals with lived experience of pregnancy hypertension, 32% healthcare professionals (obstetricians, midwives, general practitioners, pediatricians and neonatologists, physicians, neonatal nurses), 3% family/ friends/ relatives, 10% researchers. Workshop: 6 men and women with lived experience of pregnancy hypertension, 5 midwives, 4 obstetricians, 1 neonatologist, 1 general practitioner, a representative from the Stillbirth and Neonatal Death Charity and a representative from Best Beginnings Charity.

How were stakeholders recruited?

The survey was promoted through social media (Facebook, Twitter), clinical networks known to steering group members (targeting BAME (Black, Asian, and minority ethnic) and non-English speaking women) and the Action on Pre-eclampsia charity.

Were stakeholders actively involved or did they just participate?

Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of 15 members: 3 lay members with lived experience of pregnancy hypertension, the CEO of a stake holding charity, 4 obstetricians, 1 obstetric physician, 2 general practitioners, 1 midwife, 1 neonatologist, 1 research scientist and 1 JLA advisor. The members promoted the survey, were involved in data processing and oversaw the workshop.