A research agenda for hypertensive disorders in pregnancy in Ghana through a priority setting partnership

Abstract

Background

Hypertensive disorders of pregnancy are among the leading causes of maternal and perinatal morbidity and mortality in Ghana. Despite this high burden, research priorities have historically been shaped by academic, funding, policy and industry actors, with limited engagement of patients and survivors, their carers and health care professionals. Their lived experiences offer critical insights that can complement traditional research agendas. Priority Setting Partnerships aim to address this gap by involving these stakeholders in identifying future research needs. This study aimed to identify research topics for improving care for hypertensive disorders of pregnancy in Ghana, based on these stakeholder perspectives.

Methods

A priority setting partnership was conducted using an integrated approach that combined the James Lind Alliance priority setting guidance with the Research for Health Justice Ethical Toolkit to ensure ethical and contextual relevance.

Results

We show that the top 10 research priorities were related to diagnosis timing and accuracy, pathogenesis, care provision challenges, awareness, mental health and coping, shared decision making, preconception care and drug adverse effects. This is based on 774 responses obtained, between February and August 2024, from 238 participants across Ghana, consolidated into 51 research areas. A second survey completed by 243 participants prioritizes these areas into 25 interim priorities. These priorities are further refined during the final prioritization workshop into a list of 10 research priorities.

Conclusions

This study demonstrates how locally grounded and ethically informed priority setting partnerships can be conducted in low- and middle-income settings and provide community-driven research priorities to guide future research on hypertensive disorders of pregnancy in Ghana.

Plain language summary

High blood pressure during pregnancy is a major cause of illness and death for mothers and babies in Ghana. However, research to improve this condition is often shaped by researchers and funders only, with limited input from the people most affected. This study aimed to identify the most important research topics for improving care for women with high blood pressure during pregnancy, based on views of the patients, their families and healthcare workers. We used surveys and group discussions to collect questions and concerns from people across Ghana and worked with them to agree on a final list of research priorities. Ten key research priorities were finalized, including early diagnosis, quality of care, mental health support and shared decision making. These findings can help guide future research so that it better reflects the real needs of the women.

Duijvendijk et al., conduct a national priority setting partnership in Ghana that engages patients, caregivers, and healthcare professionals to identify research needs in hypertensive disorders of pregnancy. They show that this bottom-up participatory approach which generates a shared top ten of research expectation highlighting the community’s needs to guide future research agendas.

Introduction

Hypertensive disorders of pregnancy (HDP), such as preeclampsia, gestational and chronic hypertension, account for approximately one in seven maternal deaths worldwide¹. The heaviest burden of HDP lies in sub-Saharan Africa (SSA), where countries experience a relatively high HDP prevalence, case fatality rate, and maternal mortality ratio (MMR)^2–4. In Ghana, the MMR was 263 deaths per 100,000 live births in 2020, approximately 20 times higher than the average MMR in high-income countries⁴. It is estimated that 18-37% of these maternal deaths can be attributed to HDP^5–8. HDP furthermore contributes significantly to adverse perinatal outcomes, such as increased incidence of stillbirth, prematurity, birth asphyxia, and other birth complications⁹. This evidently contributes to the neonatal mortality rate in SSA, which is estimated to be between 22 and 37 per 1000 live births^10,11. Specifically, in Ghana, the neonatal mortality rate is estimated at 22.8 per 1000 live births^12,13. These perinatal/neonatal complications also impact the child’s growth, cognitive development and overall quality of life, and therefore addressing HDP can have profound, long-term effects on early childhood development in LMICs¹⁴.

Sustainable Development Goal (SDG) Target 3.1 and 3.2 aim to reduce the global average MMR to less than 70 deaths per 100,000 live births and the neonatal mortality rate to less than 12 per 1000 live births by 2030¹⁵. Despite extensive investments in research and interventions to this end, in most SSA countries, the declining MMR has stagnated in recent years¹⁶. The reasons for the stagnation in health indicators are multifactorial and complex. However, one such reason is the “waste” in biomedical research investment, as only approximately fifteen percent of global research investments in 2009 translated into improvements to clinical care¹⁷. This calls for more relevant, actionable, and translatable research and interventions that prioritize the needs of the service users and those providing maternity and neonatal care. To achieve this, research agenda setting processes should move away from primarily engaging historical research drivers like the academic (medical) community, private sector, funders, and policy makers, and instead include the end service users in priority setting^17,18.

The James Lind Alliance (JLA) was established to encourage the transition towards a more relevant and equitable research agenda setting¹⁹. The JLA method was designed to raise awareness of research questions that are of direct importance to patients, their carers, and healthcare professionals, and as a result drive a change in funding priorities. A step-by-step method to perform Priority Setting Partnerships (PSPs), in which patients, their caregivers, and clinicians determine research priorities regarding a medical condition, was therefore developed²⁰.

In line with this, the objective of this study is to conduct a PSP to identify and prioritize topics for future research aimed at improving care for HDP in Ghana, based on the views of HDP patients, their carers, and healthcare professionals. Here we show that engaging these stakeholders results in a shared list of ten research priorities that extend beyond biomedical questions to include challenges in care delivery, mental health and coping, awareness, shared decision-making, and preconception care. These findings demonstrate that inclusive, bottom-up priority setting is both feasible and valuable in low-resource settings and provides a stakeholder-driven research agenda that can guide future research, funding, and policy efforts to improve outcomes for women affected by HDP in Ghana.

Methods

The methodology is described following the Reporting Guideline for Priority Setting of Health Research (REPRISE) reporting guideline²¹. The Hypertensive Disorders of Pregnancy Priority Setting Partnership (HDP PSP) project took place between February 5th and August 3rd, 2024, and the final report was published on October 3rd, 2024. Post-project dissemination and advocacy for the implementation of the priorities are still ongoing, mostly through the activities of the Ghanaian non-governmental organization (NGO) Action on Preeclampsia Ghana (APECGH).

Context and scope

The HDP PSP addressed care-related research priorities for HDP within Ghana. We used the definition for HDP as put forward by the International Society for the Study of Hypertension in Pregnancy (ISSHP), including, but not limited to, gestational hypertension, preeclampsia, chronic (preexisting) hypertension, and chronic hypertension with superimposed preeclampsia²². Diagnostic criteria for these conditions are included in the Supplementary File.

The HDP PSP focused on “uncertainties” regarding the diagnosis, treatment, prognosis, and causes and risk factors of HDP in Ghana (hereafter also summarized as care-related uncertainties). According to the JLA guidance, an “uncertainty” refers to a question that is not sufficiently answered by existing literature²⁰. In this study, the term ‘uncertainties’ is used as a collective term to describe participants’ questions, concerns, and perceived gaps in knowledge, reflecting issues they believe require prioritization in research.

This PSP aimed to center the perspectives of “end users” of HDP research in Ghana: HDP patients/survivors, their carers and clinicians. To protect the stakeholder-led nature of this project and have research priorities reflect the full range of submissions, an Advisory Committee consisting of end-beneficiaries was established. This committee had the mandate to adjust the PSP process and scope based on local perspectives and “out-of-scope” responses received. Other stakeholders identified as essential to engage included policy making institutes/agencies (e.g. Ministry of Health (MOH), Ghana Health Service (GHS)), research funding institutes (e.g. Centers for Disease Control and Prevention, Research and Grant Institute of Ghana), research institutes (e.g. Noguchi Memorial Institute for Medical Research (NMIMR), University of Ghana), health insurance companies and pharmaceutical companies.

Framework for priority setting

The HDP PSP methodology entailed a four-phase mixed methods approach, including semi-structured surveys, interactive meetings, and a deliberative final workshop (see Fig. 1), largely following the JLA method²⁰. In the JLA method, patients, carers, and clinicians guide the process through forming a Steering Committee, they report and prioritizes their uncertainties via two surveys and performs final prioritization during a deliberation workshop to establish a shared Top ten research priority list.

Fig. 1. Phases and activities of the HDP PSP process.

Overview of the four phases of the priority setting process, including governance and committee establishment, identification of research uncertainties, prioritization of indicative questions, and dissemination activities. (Key: Worksheet 1 – Selecting a Partner; Worksheet 2 - Deciding to Partner; Worksheet 3 - Deciding to Engage with the Wider Community; Worksheet 4 - Designing Priority-setting).

To tailor the JLA process to the local Ghanaian context, available resources, and global health ethics considerations, we integrated the Research for Health Justice (R4HJ) Ethical Toolkit for priority setting processes into the methodology²³. The R4HJ toolkit was developed to design priority-setting processes in which power is shared with local stakeholders. It consists of four worksheets that researchers can use as a reflective guide towards an ethical and representative priority setting process²³. The JLA method was modified based on the considerations resulting from these worksheets and recommendations from local collaborators, which are summarized in Table 1.

Table 1.

Modifications to the James Lind Alliance Method

Element	Modification	Justification
Stakeholder engagement	The responsibilities of the Steering Committee were modified, changing from their operational tasks to focus on providing feedback. As a result, the committee was identified as an Advisory Committee, considering the more advisory role assumed by the committee.	Necessary due to the limited time and financial resources. Through the R4HJ Ethical Toolkit, it was deemed necessary to adjust the level of participation of the committee to ensure continued involvement with the limited resources without overburdening the committee members.
	In addition to only patients, carers, and clinicians, the Advisory Committee included a community representative and policy maker; these experts are not traditionally considered part of a Steering Committee as per the JLA guide.	Recommended by local team members. Per the local conventions, their inclusion early in the project as shared decision makers would improve support for the translation of the research agenda into actionable research, policy, and interventions.
	Partnering with institutions was largely postponed to the dissemination phase, rather than being done throughout the process.	Due to resource constraints and to prevent any influence on the involved patients, carers, and clinicians due to the inherent power dynamics.
Surveys	Stakeholders with indirect experience (researchers, policy makers) were not actively excluded from the survey, though the survey primarily targeted patients, carers, and clinicians.	This change was made for the strategic purpose of increasing engagement with interested stakeholders. Their involvement would ultimately benefit the support for and/or endorsement of the agenda.
Data analysis	The literature search focused primarily on studies performed in Ghana or comparable socioeconomic or geographic contexts.	The contextual determinants of health (care) in Ghana were considered highly relevant and often more applicable than global research findings.
Final Workshop	Participants were provided with an online form to rank shortlisted priorities before the workshop. Follow-up contacts were made until each participant had completed the form. This was a prerequisite for attending the workshop.	This was done to ensure all participants were familiar with the question list in advance of the workshop. This was deemed especially important for equitable participation and also helped ameliorate low punctuality.
Administrative	No official JLA Advisor was involved in the process. Rather, experts in community engagement were consulted during the process.	This was decided due to limited resources and in order to have flexibility to tailor the process to the Ghanaian context and integrate the R4HJ toolkit.
	The protocol is not published on the JLA website.	This was due to resource constraints and because we adjusted the original JLA process.

Governance and team (Phase one)

The HDP PSP project was initiated by the Severe Preeclampsia Adverse Outcome Triage (SPOT) study group, the Ghanaian NGO APECGH, the Greater Accra Regional Hospital (GARH), and the Korle-Bu Teaching Hospital (KBTH). The core research team consisted of a final-year medical student from the UMCU (Principal Investigator (PI)), a PhD student from the UMC Utrecht (UMCU, co-investigator), the CEO of APECGH (co-investigator), a maternal health research fellow from the Ghanaian institute NMIMR (supervisor), and an associate professor in global health from the UMCU (supervisor). A qualitative researcher with expertise in participatory research methods provided guidance regarding stakeholder engagement. This team performed most of the operational tasks with co-investigators from GARH, KBTH, GHS involved where appropriate.

An Advisory Committee consisting of local HDP end beneficiaries (patients, carers, clinicians) was established to provide input and feedback to ensure the cultural appropriateness of the process. To ensure an equitable representation and involvement of this Advisory Committee, Phase One started with an extensive stakeholder analysis based on recommendations from co-investigators, a careful deliberation within the core project team and a review of ethical considerations from Worksheet 1 and Worksheet 4 of the R4HJ toolkit²³. The Advisory Committee invitees were chosen with a twofold aim: (1) to achieve optimal representation of HDP patients, carers, and clinicians, including various communities and vulnerable groups, and (2) to extend the channels of dissemination of the resulting research agenda in the different levels of society at the end of the project. The Advisory Committee consisted of five HDP survivors with diverse backgrounds (such as being a nurse, having a comorbidity or running a patient advocacy organization); two carers (one husband and one sister of HDP survivors); a community representative (a Queen mother – a traditional female leader - recognized for advocating for women’s rights and girl education); five healthcare professionals (ranging from a community health nurse to an obstetrician-gynecologist); and one policy maker. All except for one member were from the Greater Accra Region. An in-person Advisory Committee meeting was held on March 7^th, 2024, at the Greater Accra Regional Hospital to introduce the project protocol, establish respectful engagement principles, and agree on strategies for disseminating the project survey. Subsequent monthly meetings were conducted as the project progressed. An APECGH linguist was available to support translation of all communication (both in-person and online) for Advisory Committee members more comfortable with the local dialect. The Advisory Committee members were compensated for their involvement by covering food and transportation costs during in-person meetings, and mobile data usage during online meetings.

Identification of research priorities (Phase two)

A first survey was proposed to the Advisory Committee and further co-developed during an advisory committee meeting. The final version of the survey was shared again with the advisory committee to test before dissemination.

Inclusion criteria for survey participation were age of at least eighteen years; the willingness and ability to provide informed consent; and having direct experience with HDP in Ghana. The latter could be lived experience (i.e., HDP patients, survivors, carers, family or friends), or professional experience (any healthcare practitioner in the field of obstetrics and gynecology (OBGYN). Though not explicitly targeted, researchers and policymakers in the field of HDP were not excluded from participating in the survey.

The survey consisted of two sections, one with demographic questions and an open-answer section to write out questions and concerns about HDP. Two versions of the survey were created: a patient/carer version and a healthcare professional version. The versions only differed in terms of the language and use of medical jargon based on a review by the Advisory Committee. Respondents chose for themselves at the start of the survey whether they identified as patient/carer or health professional, and where identified as both, they had the ability to choose for themselves which survey version to fill out. Paper and online versions were offered to broaden accessibility. The survey can be found in the Supplementary File. Through the APECGH network, the survey was also actively disseminated during visits to health facilities and communities, via social media, calls, and voice messages. During those visits, participants were carefully walked through the survey with the help of a local translator, where necessary, to ensure the questions being asked were understood. Survey responses were collected from March 25th until April 31st, 2024. Interim evaluation of the survey responses was performed by the Advisory Committee, and the survey dissemination strategy was adapted to increase the number of respondents across the country. An overview of the dissemination locations is depicted in Fig. 2.

Fig. 2. Regional distribution of survey dissemination.

Map showing the regions in Ghana where the first and second survey dissemination activities took place.

Responses to the first survey were analyzed following a five-step process. First, the data was downloaded and cleaned. Second, “out-of-scope” submissions (evidence uncertainties that did not cover a topic regarding the diagnosis, treatment, prognosis, causes or risk factors of HDP in Ghana, or that could not be understood as an uncertainty) were excluded. Third, uncertainties were categorized into the following main groups: diagnosis, treatment, prognosis, and causes/risk factors. Uncertainties in these main groups were further subcategorized iteratively. The WHO Network for Improving Quality of Care for Maternal, Newborn and Child Health Framework was also used as a guide in this phase²⁴. Fourth, duplicate and similar uncertainties from the same sub-category were summarized into clear, unambiguous questions (hereafter referred to as “indicative questions”). When possible, two versions of the indicative question were developed—one with and one without medical jargon. Finally, literature and guidelines were reviewed to evaluate the existing knowledge base of each indicative question. Databases used were PubMed, The Cochrane Database of Systematic Reviews, Scopus (for social science questions), the Ghana Health Service Standard Treatment Guidelines, and the ISSHP Guidelines^25,26. The level of evidence was determined based on the availability of review articles, such as systematic reviews. Regarding geographical scope, reviews including Ghana were prioritized, and the case of a few search results expanded to West Africa, sub-Saharan Africa, LMICs, and finally global.

Prioritization of indicative questions (Phase three)

Prioritization of the indicative questions resulting from the data analysis was completed in two steps: a second survey, followed by a final prioritization workshop.

In the second survey, respondents were asked to select four to ten questions they personally found important out of the full list of indicative questions that were provided. Respondents were then asked to choose their top three out of their selected questions to help resolve ties where necessary. The question list was organized under the main category headings: diagnosis, treatment, prognosis, and causes and risk factors. As with the first survey, two versions were created based on the use of medical jargon and reviewed by the Advisory Committee. The surveys are available in the Supplementary File. In the online survey, the categories and associated questions were randomized for each respondent to avoid question order bias. The survey was open from June 25th until July 23rd, 2024. Inclusion criteria were the same as the first survey. Survey dissemination followed the same strategy as the first survey, with dissemination occurring at different facilities. The distribution of these locations is shown in Fig. 2. An interim priority list was generated based on the second survey responses. These indicative questions were ranked based on the number of responses adjusted according to the type of respondent (patient/carer versus healthcare professional).

The Final Prioritization Workshop was held on August 2nd, 2024, at the Center for Biodiversity Conservation Research, University of Ghana. This workshop served to reach consensus among HDP patients, carers, and healthcare professionals about the final Top ten research priorities for HDP in Ghana. The workshop participants (N = 24) were primarily patients, carers, and healthcare practitioners, including the Advisory Committee members. Two other stakeholders (one representative from the Ghana Health Service and one representative from the Society of Obstetricians and Gynecologists of Ghana, SOGOG) were included as workshop participants to promote buy-in and support for the resulting agenda. The workshop followed three sessions in which a facilitator, supported by an APECGH volunteer, facilitated a group of six participants to review the interim list of 25 questions. Each small group was carefully put together during each session for an equitable and open collaboration to achieve the objective for that session. In the first small group session, participants shared their individual preferences and tallied up the preferred questions. In the second session, each group extensively discussed the 25 questions and prepared a top 20 list of questions. After this session, a preliminary composite ranking from the four groups was calculated and presented. In the third session, this composite ranking was reviewed, and the final composite ranking was created and approved. After the workshop, the research team reviewed the final list and presented it to the Advisory Committee. The full workshop program and activities can be found in the Supplementary File.

Dissemination and implementation (Phase four)

The final Top ten research priorities were integrated into a report, which was launched via an online meeting on October 3rd, 2024²⁵. and subsequently published on the APECGH website. Additional strategies for the dissemination of the final Top ten research priorities include dissemination on both research platforms such as publication and presentations at conferences, symposia and other (scientific) meetings as well as and non-research platforms via APECGH’s engagement activities and local media with a focus on promoting partnering with research, funding and policy making institutes, to encourage the translation of the Top ten into actual research projects.

Statistics and reproducibility

This study followed a qualitative, participatory priority-setting design and did not involve experimental procedures or hypothesis-driven testing. Consequently, no inferential statistical analyses were performed. Quantitative analyses were limited to descriptive statistics, including counts, frequencies, and rankings, which were used to support the prioritization of research uncertainties per survey rounds (i.e., Phase Two and Phase Three). Submitted uncertainties were summarized and ranked based on the frequency with which participants selected them during the second round of the survey. These rankings informed the creation of an interim priority list used to facilitate discussions during the final prioritization workshop. No statistical significance testing needed to be conducted.

No formal sample size calculation was undertaken. As per the JLA and following consultation with the Advisory Committee, a pragmatic minimum recruitment target of approximately 100 respondents per survey round was considered acceptable, based on our available resources. Recruitment followed a purposive and opportunistic sampling strategy, using online dissemination and in-person community outreach facilitated by the patient organization Action on Preeclampsia Ghana. Participation rates and respondent characteristics were monitored during the data collection process to inform ongoing dissemination efforts and improve the diversity of responses. As this was a participatory, non-experimental study, the concept of replicates was not applicable. Reproducibility is addressed through transparent reporting of the study procedure as shown in this section and the supplementary materials included, enabling the process to be replicated in other settings.

Ethical approval

Ethical approval for this project was obtained from the Ghana Health Service Ethics Review Committee on February 12th, 2024, reference number 063/06/22. Informed consent was obtained from all participants before participation. For online surveys, consent was provided electronically before accessing the questionnaire, while written consent (signature or thumbprint) was obtained for paper-based or face-to-face participation after participants received and understood the study information. No conflicts of interest were reported in this project.

Results

Identification of indicative questions

The first survey was completed by a total of 292 respondents. After the exclusion of 54 incomplete surveys, 238 complete surveys remained. The respondents consisted of 87 HDP patients or survivors, 17 carers, 124 clinicians, and 10 other health professionals. Most respondents were women of reproductive age (n = 217, 91%), living or working in an urban setting (n = 196, 82%). Among the patients and carers, the majority had completed tertiary education (n = 56, 53%) and were traders (n = 24, 23%), midwives (n = 15, 14%), or teachers (n = 14, 14%) by profession. Most of the healthcare professionals were nurses and midwives (n = 85, 63%) and worked at a secondary or tertiary health facility (n = 101, 75%). Eighty percent (n = 190) of the respondents had their last experience with HDP less than five years before the survey, showing that the research priorities were based on recent experiences. Detailed baseline characteristics of the survey respondents can be found in the Supplementary File. Additionally, Fig. 3 shows the geographical distribution of the respondents. An overview of the involved stakeholders and the number of uncertainties at each process stage is depicted in Fig. 4. Respondents were counted only once, based on whether they completed the patient or healthcare professional survey. As such, midwives with lived experience of HDP who chose the patient survey (14%) were counted solely within the patient group as a HDP patient/survivor.

Fig. 3. Regional distribution of respondents.

Regional distribution of respondents of the first survey (left) and second survey (right).

Fig. 4. Summary of HDP PSP stakeholders and uncertainties per process phase.

Flow diagram showing the number of stakeholders involved and uncertainties identified at each phase of the HDP PSP.

The survey yielded a total of 774 individual submissions, of which 310 were from patients and carers, and 464 were from healthcare professionals. 161 submissions were classified as not containing any research uncertainty (see Supplementary File for the full list). Of the remaining 613 uncertainties, 114 (15%) were regarding diagnosis, 193 (25%) regarding treatment, 87 (11%) regarding prognosis, and 219 (28%) regarding causes and risk factors. There were no uncertainties reported outside the project scope. See the Supplementary File for categories and sub-categories identified. A total of 55 indicative questions were formulated after categorizing and consolidating similar uncertainties.

A literature review was conducted to identify questions that had been broadly answered. Of the 55 questions, two questions under the category “diagnosis” were excluded as they were deemed insufficient. A literature review was conducted to identify questions that had been broadly answered. Of the 55 questions, two questions under the category “diagnosis” were excluded as they were deemed sufficiently addressed through local and international treatment protocols, national health surveys, and research papers (See Supplementary File; Questions D_02 and D_07). In addition, per feedback from the Advisory Committee, it was determined to merge two pairs of questions (See Supplementary File; Questions D_04 and D_04A) and rephrase one question into a more relevant version based on the evidence found. The findings and justification for the decisions made during the literature review stage can be found in the Supplementary File. The 51 remaining questions for the second survey consisted of twelve (12) for diagnosis, nineteen (19) for treatment, ten (10) for prognosis, and ten (10) for causes/risk factors. See the Supplementary File for these questions and their associated domains.

Prioritization of indicative questions

The second project survey was completed by 243 people (96 HDP patients or survivors, 24 carers, 142 clinicians and five other healthcare professionals). Similarly to the first survey, its respondents were mainly women of reproductive age (n = 225, 93%) living or working in an urban setting (n = 209, 86%) in Western or Greater Accra Region (n = 169, 70%). The largest share of patient and carer respondents finished tertiary education (n = 44, 46%), common professions were trading (n = 23, 34%), midwifery (n = 13, 14%) and nursing (n = 11, 12%). Most of the healthcare professionals were nurses and midwives (n = 113, 77%) working at a secondary health facility (n = 90, 61%). 72% of the healthcare professionals had over two years of professional experience with HDP, underlining that their reported uncertainties were based on extensive experience. Full baseline characteristics of the second survey respondents can be found in Supplementary File. A total of 908 chosen uncertainties were received from patients and carers (average of nine submissions per respondent), and for healthcare professionals, 1221 submissions (average of eight submissions per respondent). Supplementary File shows the top 25 questions selected in the interim prioritization survey, including the detailed ranking process followed. There were no ties in ranking during the interim prioritization process. Table 2 depicts the final Top ten research priorities for the management of HDP in Ghana as concluded after the Final Prioritization Workshop (see the Supplementary File for the plain language version). The priorities include questions regarding early and accurate diagnosis, pathogenesis, barriers in service delivery, awareness of the general public, impact on mental health and coping, patient education and autonomy, preconception care, and drug side effects.

Table 2.

Final Top 10 research priority list

RANK	QUESTION
1	What are the possibilities for earlier diagnosis of HDP in Ghana to prevent complications?
2	What are the causes and risk factors of HDP in Ghana?
3	What are the challenges for healthcare professionals in Ghana regarding the diagnosis, knowledge of prognosis and complications, and provision of adequate treatment for HDP?
4	What is the current level of awareness about HDP in Ghana, and how can this be increased?
5	What is the accuracy of screening and diagnosis of HDP among women in Ghana, and how can this be improved?
6	What is the emotional and psychological impact of HDP in Ghana?
7	What are strategies to improve patient involvement, risk communication, and shared decision-making regarding HDP in Ghana?
8	How can preconception management be integrated into the standard maternal health services in Ghana?
9	What coping strategies do preeclampsia patients, their partners, and relatives use in Ghana?
10	What are the adverse effects of commonly used HDP medication in Ghana?

Three questions out of the Top ten research priorities do not correspond to the top 25 questions submitted for the final prioritization workshop. This is a result of the feedback provided by participants during the workshop, in which it was suggested to combine two pairs of questions into overarching questions and another triplet of questions into a single question (see the Supplementary File for more details). As a result, the questions ranked 11–13 eventually ended in the final Top ten list as questions 8–10.

Seven out of ten questions in the final Top ten list were also ranked high in the interim priority list, which represents alignment between the smaller group of workshop participants and the much larger second survey respondents. However, during the workshop, the participants emphasized the necessity for research beyond the Top ten list of questions. It was therefore agreed during the workshop to include any remaining questions from the interim priority list in the dissemination process.

Discussion

We conducted a Priority Setting Partnership to identify care-related research priorities for HDP in Ghana, based on the views of over 500 HDP patients, carers and clinicians. The Top ten priority list covers a wide range of topics related to the care for patients with HDP, which reflects the diverse challenges that patients, carers, and clinicians in Ghana face. Besides broader priorities regarding accurate diagnosis and the pathogenesis of HDP, context-specific challenges to quality and respectful care were reflected in the list in the questions about shared decision-making (Question 7), involvement of male partners (Question 9), myths and traditional beliefs (Question 2 and 4), and inequities in healthcare access (Question 3 and 8).

With the assistance of the R4HJ toolkit and extensive local stakeholder engagement and expertise, the JLA PSP method was adapted to address contextual factors such as the strong presence of hierarchy, importance of traditional leadership and community structures, and resource and internet access challenges²⁶.

The Top ten priorities of the HDP PSP correspond with commonly found question types in PSPs: PSP exercises are more likely to prioritize education and training, service delivery, psychological interventions, exercise, complementary interventions, and diet. This is in contrast with the majority of topics studied in (industry or sponsor-driven or investigator-driven) trials²⁷. All HDP PSP priorities except for the 5 and 10th, fall within these categories. The HDP PSP furthermore did not include questions regarding specific pharmacological and surgical therapeutic interventions, which constitute the vast majority of trials on this topic²⁷. Instead, diagnostic testing and drug safety were a priority identified in this project, as evidenced by the 5 and 10th priorities. Their presence in the HDP PSP priority list can be understood in the context of specific Ghanaian healthcare system challenges such as delays in accurate diagnosis, expensive or lack of access to medicine, and dissatisfaction and disrespectful maternal care²⁸.

GHS, the largest health service delivery arm under the auspices of the Ministry of Health, published priorities for maternal health in its strategic plan for 2020-2025²⁹. This national strategic plan prioritizes health system strengthening, tracking, and the implementation of audits for maternal health, among others, which were not explicitly identified as priorities in the HDP PSP. However, alignment is observed in issues, such as the availability of skilled healthcare professionals, as seen in the 1st, 3rd, and 5th priorities in our Top ten. It is also worth noting that the average patient, carers, and frontline healthcare worker may not necessarily be familiar with the more systemic factors and terminologies within the healthcare system that define the quality of care, such as regular audits, effective clinical guidelines, health information systems, and robust referral processes. From the patient’s perspective, these factors are perceived downstream in the form of suboptimal availability and accessibility of skilled healthcare workers, medicine and other equipment, which defines the quality of care for them.

A number of similarities can also be identified between this HDP PSP and the JLA PSP on HDP conducted in the UK between 2018 and 2019³⁰. As visually summarized in Fig. 5, the top three priorities in Ghana (early diagnosis, pathogenesis, and needs of healthcare professionals) are also included in the UK HDP PSP. HDP screening, mental health effects, and psychological needs of patients and families are also featured in both Top 10 s. This suggests that the priorities of HDP patients, carers, and healthcare professionals are potentially universal and recognized in different settings. However, it is observed that Ghana HDP PSP included a stronger focus on awareness, mental health effects, and access to adequate diagnosis and care, whereas the UK HDP PSP prioritized (long-term) management and prognosis. These differences likely reflect contextual challenges in Ghana, such as persisting barriers in primary (mental) healthcare, which result in the most “fundamental questions” still remaining unaddressed for many patients. Additionally, limited health literacy and low awareness of long-term health implications of HDP on future pregnancies and overall health could be another factor driving the difference in priorities identified between the UK HDP PSP and the Ghana HDP PSP^31–33.

Fig. 5. Comparison between the Top 10 HDP priorities identified in Ghana and the United Kingdom.

A comparison of the top ten priorities in HDP research between Ghana and the United Kingdom as identified in comparable PSP studies.

To the best of our knowledge, this PSP is the second JLA PSP on HDP worldwide (one performed in the United Kingdom in 2018-2019) and the first JLA PSP on HDP to be conducted in Africa^30,34. At the time of this study, the only other JLA PSPs conducted in LMIC contexts were taking place in Ethiopia (on women’s genital prolapse and incontinence), Uganda (on maternal and newborn health) and Tanzania (on adolescent mental health)^35–37. Their outcomes were not available yet, but an interim report was published in which the Ethiopian team describes their experiences with applying the JLA method in their context³⁷. Most of their experiences correspond to this HDP PSP, such as the need to administer the survey in person to achieve sufficient inclusivity, the importance of access to an existing local network, issues with language barriers, and challenges with second survey respondents not reviewing the full list of questions. Both PSPs also narrowed down the geographical range of their literature searches to ensure contextually relevant information to guide the shortlisting of the summary questions. The PSP in Ethiopia visited rural health clinics and patients’ homes, which we could not do due to resource constraints. We addressed these potentially missed groups through local survey dissemination by APEC Ghana’s regional coordinators, community health nurses and other volunteers. Similarly to the Ethiopian team that translated the written questions into Amharic, we also chose to provide a Twi translation of the second survey during in-person administration, as Twi is a widely spoken language. This illustrates the importance of critically evaluating the optimal strategy for each context, rather than using a set approach for “the LMIC setting”. Lastly, the Ethiopian PSP team noticed that the uncertainties identified during the first survey did not resonate with the second survey participants. Our team experienced the opposite, as the topics included in the second survey were complemented by the respondents for covering all of their personal concerns and further aligned with the ranking during the final prioritization workshop.

Finally, as is the case in most research activities in LMIC settings, the Advisory Committee's involvement was limited due to constraints on financial compensation, and the short project timeline limited the amount of feedback that could be collected at each stage. The involvement of stakeholders with a historically powerful role in agenda settings (policy makers, research institutes, funding institutes, and insurance companies) was largely postponed to Phases three and four. This made it possible to amplify the voices of patients, carers, and clinicians first in the project. However, these influential stakeholders are also crucial for the translation of the priorities into research projects. Involving them late in the process may have a negative effect on the implementation of the research agenda; however, this must be weighed against the deliberate space created for patients and carers to share their voices.

The main strength of this study is its transdisciplinary and inclusive nature, including stakeholder and community engagement in all stages of the process. The network and expertise of APECGH were crucial to realizing this—their professional network provided opportunities for collaboration with healthcare facilities, and their invested follower and volunteer bases allowed for survey coverage throughout the country among non-English speakers and community members. Furthermore, APECGH’s expertise was crucial to consider cultural factors such as appropriate community entry strategies, endorsement of the research agenda through involvement of traditional leaders and the inclusion of non-clinicians in some project stages. This contributed significantly to the broad representation and reduced the time required to reach the final research priority list, considering the limited budget and timeline (six months, compared to twelve to eighteen months as recommended by the JLA²⁰).

A last strength of this study was the incorporation of the R4HJ Toolkit into the PSP process. The worksheets provided useful reflections for the stakeholder analysis, and the ethical considerations highlighted helped to decrease hierarchy and build trust among the Advisory Committee members, which was consequently also observed during the final workshop. In this way, the use of the R4HJ also helped to compensate for the absence of an official JLA Advisor in the project, who normally ensures a constructive group dynamic.

The limitation of this study is that the risk of bias could not be prevented. While this may be due to a lack of resources, selection bias could also have been introduced in the convenience sampling via APECGH’s and co-investigators’ networks. Women with challenges accessing healthcare, low literacy or no formal education, people with a disability, and partners of survivors were likely more difficult to reach with our dissemination strategy. Low inclusion of partners, inhabitants of rural areas, and people with no formal education is also represented in the baseline data. Yet, the high degree of overlap in the uncertainties reported in the first survey, the final workshop rankings, and everything in between provides confidence in the potential generalizability of these findings.

A second limitation might have arisen based on an observation of a local midwife who reported that pregnancy complications are a taboo in Ghanaian culture, which may have led to selection bias as well^28,38. Since the suspected missed groups are populations that generally face more or different challenges accessing care, the missed input possibly translated to skewed results. As such, any future research projects should aim to consult these groups during the translation of the priority (domains) into specific research projects. Specific attention should also be given to adolescents below eighteen years, who were excluded from this survey. Since adolescents often face more stigmatization, their priorities may also differ from those of the general HDP patient population. Self-reporting bias may have occurred due to the self-reported identity of the HDP patient/carer or professional in the survey. A remarkably large number of reported HDP patients or carers were also clinicians, and there were instances reported where a clinician identified themselves as “carer” when the study intended to identify them as “healthcare provider”. Thereby, the actual share of healthcare professionals may be larger than reported in this article. The high number of double patient-clinician roles may, however, also be a sign that personal experience is a motivation for these clinicians to participate in HDP research. Bias may also have been introduced when providing the four main categories in the first survey, as it may have directed respondents towards reporting only in-scope uncertainties. However, the scope was already set to cover a wide range of topics, including those important to the respondents. Lastly, the JLA method does not provide clear guidance on what constitutes a “broadly answered” question. This could lead to an unavoidable subjectivity in reviewing the responses. In our study, this was addressed pragmatically by focusing on the presence of systematic reviews to guide decisions on exclusion or refinement of uncertainties. Additionally, the fact that the literature review was executed by a single reviewer may have impacted the objectivity of the results. The limitation was addressed by regular meetings between the reviewers to consider decisions made by individual reviewers, as well as consulting the full research team and Advisory Committee where necessary.

Conclusion

The HDP PSP project successfully identified care-related research priorities of HDP patients, carers, and clinicians in Ghana. An extensive local network, stakeholder engagement, and use of the R4HJ ethical toolkit enabled an agenda that adequately represents these populations, despite the limited resources. We believe that research on the resulting priorities can lead to more conscientious allocation of local research funds for HDP, and thereby improvements in maternal and perinatal health in Ghana. To ensure its effect, advocacy for the incorporation of this list into the national research agenda is crucial, as well as active dissemination to and engagement with academic, funding, policy, and industry actors to guide future direction and funding for future research in maternal healthcare.

The HDP PSP priority list provides a broad direction for future research, but focused research questions will need to be formulated within the priority areas. We highly recommend consulting (vulnerable) groups that were underrepresented in our project during this process. This study provides valuable insight into the perspective and expectations of end users, such as patients, carers, and clinicians, with regard to maternal health research. However, it is recommended for future research to focus on how these priorities are translated into research projects, interventions, and changes in policy and funding schemes. Furthermore, as maternal health policies, strategies, and interventions sponsored by foreign donors frequently have multinational reach and impact, additional PSPs are recommended across Sub-Saharan Africa to provide a more comprehensive understanding of patient perspectives and expectations. Finally, additional studies in patient and community engagement in research are recommended to enhance equitable partnerships in research agenda design and implementation.

Author contributions

D.v.D. and J.K.A. conceived and led the study and served as co-corresponding authors. D.v.D. and J.K.A. coordinated and executed the priority setting partnership, led data collection and analysis, and drafted the manuscript. K.K.L., L.V.D, D.O., M.M., and J.B. contributed substantially to study execution, provided supervisory input, and participated in multiple rounds of manuscript review and revision. T.K.B., E.S., R.v.V., S.B.A., and K.A.B. contributed to the initial design, supported the ethical approval processes, and reviewed and provided critical feedback on the manuscript. P.F. and A.O.B. reviewed the manuscript independently and, together with the remaining HDP PSP advisory committee, reviewed and approved the final version of the manuscript.

Peer review

Peer review information

Communications Medicine thanks Rebecca Whybrow and Isabel Morgan for their contribution to the peer review of this work. A peer review file is available.

Competing interests

The authors declare no competing interests.

Supplementary information

The online version contains supplementary material available at https://doi.org/10.1038/s43856-026-01726-z.