Prioritize Research Questions Research Articles

Gaps in Maternal, Newborn, and Child Health Research: A Scoping Review of 72 Years in Ethiopia

Background: Despite significant reductions in maternal and child mortality over the past few decades, a disproportionate number of global deaths occur in low and middle-income country settings, such as Ethiopia. To prioritize research questions that would generate policy recommendations for better outcomes, we conducted a scoping review that gathers the current knowledge of maternal, newborn, and child health (MNCH) and illustrates remaining gaps in Ethiopia. Methods: We conducted a search strategy from 1946-2018 in PubMed/MEDLINE, EMBASE, and the WHO African Index Medicus. The study team of reviewers independently screened titles, abstracts, and full-texts; abstracted data; and reconciled differences in pairs. Descriptive analyses were conducted. Findings: We identified 7,829 unique articles of which 2,170 were included. Most MNCH publications in Ethiopia (70·0%) were published in the last decade, 2010-2018. Most studies included children aged one to less than 10 years old (30·5%), women of reproductive age (22·0%), and pregnant women (21·9%); fewer studies included newborns (7·0%), infants (6·6%), and postpartum women (2·9%). Research topics included demographics and social determinants of health (43·4%), nutrition (15·3%), and infectious diseases (13·0%). There were limited studies on violence (1∙4%), preterm birth (0·8%), antenatal/postpartum depression (0·7%), stillbirths (0·1%), and accidents (0·1%). Most study designs were cross-sectional (53·6%). A few study designs included prospective cohort studies (5·5%) and randomized control trials (2·3%). Interpretation: This is the first scoping review to describe the landscape of MNCH research in Ethiopia. Understanding the depth of existing knowledge will support the prioritization and development of future research questions. Additional studies are needed to focus on the neonatal, infant, and postpartum populations as well as preterm and stillbirth outcomes. Funding Statement: Bill & Melinda Gates Foundation. Declaration of Interests: We declare no conflicting interests.

Patient Engagement in Research Design and Implementation: Moving From Infancy to Adolescence

Patient (also referred to as User or Older Adult) engaged research is a unique approach to research design, implementation, and dissemination. The practice of engaged research, in its broader sense, involves service recipients, caregivers, clinicians, and other stakeholders in prioritization of research questions, approach, and practice translation to ensure strong stewardship of funds, valid and reliable methods, and practical application. Patient engaged research also aligns with tenets of person-centered care in the inclusive nature and the expectation that the practice will improve the processes and the outcomes of research. Likewise, GSA’s focus on diversity of thought through interdisciplinary work strongly aligns with inclusion of patient and stakeholder voices in the performance of interdisciplinary research. Although patient and stakeholder engagement in research is a new approach for many, globally, funders increasingly require evidence of “meaningful” engagement in project proposals. In the United States, the Patient-Centered Outcomes Research Institute (PCORI) is well-known for funding engaged research and the National Institute on Aging (NIA) has demonstrated use of “collaborative” methods central to patient engagement within the IMPACT Collaboratory. Patient engagement literature, while growing, does not yet provide adequate guidance for replication of current or development of new approaches to patient engagement in research. Therefore, the purpose of this symposium is to frame patient engagement through a historic lens (Roes) and discuss the ethics of engagement (O’Sullivan). In addition, we will share program outcomes from three patient engagement programs: the Leading Age LTSS Center, Rural Patient & Stakeholder Engagement, and Sages in Every Setting. Patient/Person Engagement in Research Interest Group Sponsored Symposium.

Setting global research priorities for private sector child health service delivery: Results from a CHNRI exercise.

BackgroundThe private health sector is an important source of sick child care, yet evidence gaps persist in best practices for integrated management of private sector child health services. Further, there is no prioritized research agenda to address these gaps. We used a Child Health and Nutrition Research Initiative (CHNRI) process to identify priority research questions in response to these evidence gaps. CHNRI is a consultative approach that entails prioritizing research questions by evaluating them against standardized criteria.MethodsWe engaged geographically and occupationally diverse experts in the private health sector and child health. Eighty-nine experts agreed to participate and provided 150 priority research questions. We consolidated submitted questions to reduce duplication into a final list of 50. We asked participants to complete an online survey to rank each question against 11 pre-determined criteria in four categories: (i) answerability, (ii) research feasibility, (iii) sustainability/equity, and (iv) importance/potential impact. Statistical data analysis was conducted in SAS 9.4 (SAS Institute Inc, Cary NC, USA). We weighted all 11 evaluation criteria equally to calculate the research priority score and average expert agreement for each question. We disaggregated results by location in high-income vs low- and middle-income countries.ResultsForty-nine participants (55.1%) completed the online survey, including 33 high-income and 16 low- and middle-income country respondents. The top, prioritized research question asks whether accreditation or regulation of private clinical and non-clinical sources of care would improve integrated management of childhood illness services. Four of the top ten research priorities were related to adherence to case management protocols. Other top research priorities were related to training and supportive supervision, digital health, and infant and newborn care. Research priorities among high-income and low- and middle-income country respondents were highly correlated.ConclusionTo our knowledge, this is the first systematic exercise conducted to define research priorities for the management of childhood illness in the private sector. The research priorities put forth in this CHNRI exercise aim to stimulate interest from policy makers, program managers, researchers, and donors to respond to and help close evidence gaps hindering the acceleration of reductions in child mortality through private sector approaches.

A European Research Agenda for Geriatric Emergency Medicine: a modified Delphi study

Key Summary PointsAimTo provide an inventory and prioritisation of research questions amongst GEM professionals throughout Europe.FindingsA list of 10 research questions was identified and prioritised.MessageThe list of research questions may serve as guidance for scientists, policymakers and funding bodies in prioritising future research projects.

A Patient-Clinician James Lind Alliance Partnership to Identify Research Priorities for Hyperemesis Gravidarum

Objective There are many uncertainties surrounding the aetiology, treatment and sequelae of hyperemesis gravidarum (HG). Prioritising research questions could reduce research waste, helping researchers and funders direct attention to those questions which most urgently need addressing. The HG priority setting partnership (PSP) was established to identify and rank the top 25 priority research questions important to both patients and clinicians. Methods Following the James Lind Alliance (JLA) methodology, an HG PSP steering group was established. Stakeholders representing patients, carers and multidisciplinary professionals completed an online survey to gather uncertainties. Eligible uncertainties related to HG. Uncertainties on nausea and vomiting of pregnancy and those on complementary treatments were not eligible. Questions were verified against the evidence. Two rounds of prioritisation included an online ranking survey and a 1-hour consensus workshop. Results 1009 participants (938 patients/carers, 118 professionals with overlap between categories) submitted 2899 questions. Questions originated from participants in 26 different countries, and people from 32 countries took part in the first prioritisation stage. 66 unique questions emerged, which were evidence checked according to the agreed protocol. 65 true uncertainties were narrowed via an online ranking survey to 26 unranked uncertainties. The consensus workshop was attended by 19 international patients and clinicians who reached consensus on the top 10 questions for international researchers to address. More patients than professionals took part in the surveys but were equally distributed during the consensus workshop. Participants from low-income and middle-income countries noted that the priorities may be different in their settings. Conclusions By following the JLA method, a prioritised list of uncertainties relevant to both HG patients and their clinicians has been identified which can inform the international HG research agenda, funders and policy-makers. While it is possible to conduct an international PSP, results from developed countries may not be as relevant in low-income and middle-income countries.

Research priorities in cardiovascular imaging

AimA modified Delphi approach was used to develop consensus opinion among British Society for Cardiac Imaging/British Society of Cardiac CT (BSCI/BSCCT) members in order to prioritise research questions in cardiovascular...

Maternal and newborn health priority setting partnership in rural Uganda in association with the James Lind Alliance: a study protocol

BackgroundMaternal and newborn deaths and ill health are relatively common in low income countries, but can adequately be addressed through locally, collaboratively designed, and responsive research. This has the potential to enable the affected women, their families and health workers themselves to explore ‘why maternal and newborn adverse outcomes continue to occur. The objectives of the study include;To work with seldom heard groups of mothers, their families, and health workers to identify unanswered research questions for maternal and newborn health in villages and health facilities in rural UgandaTo establish locally responsive research questions for maternal and newborn health that could be prioritised together with the public in UgandaTo support the case for locally responsive research in maternal and newborn health by the ministry of health, academic researchers and funding bodies in Uganda.MethodsThe present study will follow the James Lind Alliance (JLA) Priority Setting Partnership (PSP) methodology. The project was initiated by an academic research group and will be managed by a research team at the Sanyu Africa Research Institute on a day to day basis. A steering group with a separate lay mothers’ group and partners’ group (individuals or organisations with interest in maternal and newborn health) will be recruited. The PSP will be initiated by launch meetings, then a face-to-face initial survey for the collection of raw unanswered questions; followed by data collation. A face-to-face interim prioritisation survey will then be performed to choose questions before the three separate final prioritisation workshops.The PSP will involve many participants from an illiterate, non-internet population in rural eastern Uganda, but all with an interest in strategies to avert maternal and newborn deaths or morbidities in rural eastern Uganda. This includes local rural women, their families, health and social workers, and relevant local groups or organisations.We will generate a top 10 list of maternal and newborn health research priorities from a group with no prior experience in setting a research agenda in rural eastern Uganda.DiscussionThe current protocol elaborates the JLA methods for application with a new topic and in a new setting translating the JLA principles not just into the local language, but into a rural, vulnerable, illiterate, and non-internet population in Uganda. The face-to-face human interaction is powerful in eliciting what exactly matters to individuals in this particular context as opposed to online surveys.This will be the first time that mothers and lay public with current or previous experience of maternal or neonatal adverse outcomes will have the opportunity to identify and prioritise research questions that matter to them in Uganda. We will be able to compare how the public would prioritise maternal health research questions over newborn health in this setting.

Developing an Environmental Health Sciences COVID-19 Research Agenda: Results from the NIEHS Disaster Research Response (DR2) Work Group's Modified Delphi Method.

Leveraging the community of practice recently established through the U.S. National Institute of Environmental Health Sciences (NIEHS) Disaster Research Response (DR2) working group, we used a modified Delphi method to identify and prioritize environmental health sciences Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) and associated Coronavirus Disease 2019 (COVID-19) research questions. Twenty-six individuals with broad expertise across a variety of environmental health sciences subdisciplines were selected to participate among 45 self-nominees. In Round 1, panelists submitted research questions and brief justifications. In Round 2, panelists rated the priority of each question on a nine-point Likert scale. Responses were trichotomized into priority categories (low priority; medium priority; and high priority). A research question was determined to meet consensus if at least 69.2% of panelists rated it within the same priority category. Research needs that did not meet consensus in round 2 were redistributed for re-rating. Fourteen questions met consensus as high priority in round 2, and an additional 14 questions met consensus as high priority in round 3. We discuss the impact and limitations of using this approach to identify and prioritize research questions in the context of a disaster response.

Participatory Action Planning to Address the Opioid Crisis in a Rural Virginia Community Using the SEED Method

The SEED Method is a multi-stakeholder approach that was created to involve diverse stakeholders in the development and prioritization of research questions using community-based participatory research (CBPR) principles. Here we describe an adaptation of the SEED Method that focuses on developing and prioritizing strategies for addressing a health problem and bringing stakeholders together to develop and implement community action plans based on those strategies. We describe steps for implementing the SEED Method for community action planning and the results of a case study in a rural Virginia community with high opioid prescription and mortality rates. A participatory research team worked with three groups of Topic stakeholders to gather data, develop conceptual models, and create and prioritize strategies for reducing prescription and non-prescription opioid misuse and overdoses. Each group came up with 19 to 25 strategies and prioritized their top five, which included actions, services or programs, strategies, policies, and system changes. Attendees at community action planning meetings reviewed the 15 prioritized strategies, proposed three additional strategies, and prioritized their top choices. Community stakeholders started four work groups to implement the selected strategies in collaboration with the research team.

Scoping review protocol on maternal, newborn and child health research in Ethiopia

IntroductionThere has been a tremendous reduction in maternal and child mortality in the last decade. However, a significant number of deaths still occur disproportionately in low-income country settings. Ethiopia is...

Developing a Patient- and Family-Centered Research Agenda for Hospital Medicine: The Improving Hospital Outcomes through Patient Engagement (i-HOPE) Study.

Patient, caregiver, and other stakeholder priorities have not been robustly incorporated into directing hospital-based research and improvement efforts. To systematically engage stakeholders to identify important questions of adult hospitalized patients and to create a prioritized research agenda for improving the care of adult hospitalized patients. A collaborative approach to stakeholder engagement and research question prioritization. Researchers and patients from eight academic and community medical centers partnered with 39 patient, caregiver, professional, research, and medical organizations. We applied established standards for formulating research questions and stakeholder engagement. This included: a multi-pronged, inclusive patient and stakeholder engagement strategy; surveys of patients and stakeholder organizations to identify important questions; content analysis of submitted questions; and a 2-day in-person meeting with stakeholder organization representatives and patient partners to prioritize and rank submitted questions. A total of 499 respondents including patients, caregivers, healthcare providers, and researchers from 39 organizations submitted 782 research questions. These questions were categorized into 70 distinct topics-52 that were health system related and 18 disease specific. From these categories, we identified 36 common questions; the final 11 questions were identified, prioritized and ranked during an in-person priority-setting meeting. Questions considered highest priority related to ensuring shared treatment and goals of care decision making and improving hospital discharge handoff to other care facilities and providers. We identified 11 prioritized research questions that should galvanize funders, researchers, and patient advocates to address and improve the care of hospitalized adult patients.

Introduction and methods of the evidence-based guidelines for the diagnosis and management of autism spectrum disorder by the Italian National Institute of Health

BackgroundAutism Spectrum Disorder (ASD) is a neuro-developmental disorder that affects communication and behavior with a prevalence of approximately 1% worldwide. Health outcomes of interventions for ASD are largely Participant Reported Outcomes (PROs). Specific guidelines can help support the best care for people with ASD to optimize these health outcomes but they have to adhere to standards for their development to be trustworthy.ObjectiveThe goal of this article is to describe the new methodological standards of the Italian National Institute of Health and novel aspects of this guideline development process. This article will serve as a reference standard for future guideline development in the Italian setting.MethodsWe applied the new standards of the Italian National Institute of Health to the two guidelines on diagnosis and management of children/adolescents and adults with ASD, with a focus on the scoping, panel composition, management of conflict of interest, generation and prioritization of research questions, early stakeholders’ involvement, and PROs. Recommendations are based on the Grading of Recommendations Assessment, Development and Evaluation (GRADE) Evidence-to-Decision frameworks.ResultsFollowing a public application process, the ISS established two multidisciplinary panels including people with ASD and/or their caregivers. Seventy-nine research questions were identified as potentially relevant for the guideline on children and adolescents with ASD and 31 for the one on adults with ASD. Questions deemed to have the highest priority were selected for inclusion in the guidelines. Other stakeholders valued their early involvement in the process which will largely focus on PROs. The panels then successfully piloted the development of recommendations using the methodological standards and process set by the ISS with a focus on PROs.ConclusionsIn this article, we describe the development of practice guidelines that focus on PROs for the diagnosis and management of ASD based on novel methods for question prioritization and stakeholder involvement. The recommendations allow for the adoption or adaptation to international settings.

Informing Patient-Centered Care Through Stakeholder Engagement and Highly Stratified Quantitative Benefit–Harm Assessments

ObjectivesIn a previous project aimed at informing patient-centered care for people with multiple chronic conditions, we performed highly stratified quantitative benefit–harm assessments for 2 top priority questions. In this current work, our goal was to describe the process and approaches we developed and to qualitatively glean important elements from it that address patient-centered care. MethodsWe engaged patients, caregivers, clinicians, and guideline developers as stakeholder representatives throughout the process of the quantitative benefit–harm assessment and investigated whether the benefit–harm balance differed based on patient preferences and characteristics (stratification). We refined strategies to select the most applicable, valid, and precise evidence. ResultsTwo processes were important when assessing the balance of benefits and harms of interventions: (1) engaging stakeholders and (2) stratification by patient preferences and characteristics. Engaging patients and caregivers through focus groups, preference surveys, and as co-investigators provided value in prioritizing research questions, identifying relevant clinical outcomes, and clarifying the relative importance of these outcomes. Our strategies to select evidence for stratified benefit–harm assessments considered consistency across outcomes and subgroups. By quantitatively estimating the range in the benefit–harm balance resulting from true variation in preferences, we clarified whether the benefit–harm balance is preference sensitive. ConclusionsOur approaches for engaging patients and caregivers at all phases of the stratified quantitative benefit–harm assessments were feasible and revealed how sensitive the benefit–harm balance is to patient characteristics and individual preferences. Accordingly, this sensitivity can suggest to guideline developers when to tailor recommendations for specific patient subgroups or when to explicitly leave decision making to individual patients and their providers.

A River of Bones: Wildebeest Skeletons Leave a Legacy of Mass Mortality in the Mara River, Kenya

Animal carcasses can provide important resources for a suite of consumers, and bones may provide a largely overlooked component of this resource, as they contain a large proportion of the phosphorus (P) in a carcass and they can persist for decades to millennia. We synthesized several datasets from our research in the Mara River, in which annual mass drownings of wildebeest (Connochaetes taurinus) contribute 2.2×105 kg of bones per year, to examine the ecological role that bone could play in this river ecosystem and to prioritize research questions on the role of bones in aquatic ecosystems in general. We measured bone stoichiometry and used in-stream litterbags to measure bone decomposition rate, both of which varied by bone type. Decomposition occurs as a two-stage process, with 15% of the mass being relatively labile and decomposing in 80-120 days and the remaining recalcitrant portion decomposing over >80 years, leading to an estimated standing stock of 5.1×106 kg bones in the river. We used mesocosm experiments to measure leaching rates from bones. Leachate from fresh bones was an order of magnitude higher in inorganic nitrogen (N) than P; however, aged bones from the river leached much more P than N, which stimulated primary production. Biofilms growing on bones had five times greater chlorophyll a and 2 times greater organic matter than those growing on rocks, although algal composition was not significantly different between the two substrates. Biofilms growing on bones also differed from biofilms on rocks in carbon (C) and N stable isotope signature. Mixing models suggest that biofilms on bones account for 19% of macroinvertebrate and 24% of fish tissues in the Mara River, even months after carcasses were present. In combination, these findings suggest that bones may influence nutrient cycling, ecosystem function, and food webs in the Mara River, potentially on decadal time scales. Bones may also be important in other aquatic ecosystems, and mass extirpations of large land mammals may have led to a loss of this resource. Large animal bones may play a unique role in ecosystems via their slow release of limiting nutrients.

Involving children and young people in research

Abstract Attitudes to the participation and involvement of infants, children and young people in research have evolved over the years and will undoubtedly continue to change. Today we recognize that they have the right to benefit from research and have their care ‘assured by research’, as well as the right to protection from any dangers from research participation as well as protection against the dangers of receiving non-evidenced treatments. We also recognize that they can be involved in many ways, including prioritising research questions and the outcomes that are measured, helping design studies so that they are acceptable and successful, ensuring information is comprehensible, and participating in disseminating outcomes and discussing emerging issues. Here, I provide a summary of the changes that have occurred. I explain why involvement is important, discuss how to do this, and provide tips and perspectives from children and young people themselves. I provide pointers to other sources of information and advice. Finally, I consider ways in which involvement might evolve in the future.

Improving natural product research translation: From source to clinical trial.

While great interest in health effects of natural product (NP) including dietary supplements and foods persists, promising preclinical NP research is not consistently translating into actionable clinical trial (CT) outcomes. Generally considered the gold standard for assessing safety and efficacy, CTs, especially phase III CTs, are costly and require rigorous planning to optimize the value of the information obtained. More effective bridging from NP research to CT was the goal of a September,2018transdisciplinaryworkshop. Participants emphasized that replicability and likelihood of successful translation depend on rigor in experimental design, interpretation, and reporting across the continuum of NP research. Discussions spanned good practices for NP characterization and quality control; use and interpretation of models (computational through in vivo) with strong clinical predictive validity; controls for experimental artefacts, especially for in vitro interrogation of bioactivity and mechanisms of action; rigorous assessment and interpretation of prior research; transparency in all reporting; and prioritization of research questions. Natural product clinical trials prioritized based on rigorous, convergent supporting data and current public health needs are most likely to be informative and ultimately affect public health. Thoughtful, coordinated implementation of these practices should enhance the knowledge gained from future NP research.

Top research priorities for preterm birth: results of a prioritisation partnership between people affected by preterm birth and healthcare professionals

BackgroundWe report a process to identify and prioritise research questions in preterm birth that are most important to people affected by preterm birth and healthcare practitioners in the United Kingdom and Republic of Ireland.MethodsUsing consensus development methods established by the James Lind Alliance, unanswered research questions were identified using an online survey, a paper survey distributed in NHS preterm birth clinics and neonatal units, and through searching published systematic reviews and guidelines. Prioritisation of these questions was by online voting, with paper copies at the same NHS clinics and units, followed by a decision-making workshop of people affected by preterm birth and healthcare professionals.ResultsOverall 26 organisations participated. Three hundred and eighty six people responded to the survey, and 636 systematic reviews and 12 clinical guidelines were inspected for research recommendations. From this, a list of 122 uncertainties about the effects of treatment was collated: 70 from the survey, 28 from systematic reviews, and 24 from guidelines. After removing 18 duplicates, the 104 remaining questions went to a public online vote on the top 10. Five hundred and seven people voted; 231 (45%) people affected by preterm birth, 216 (43%) health professionals, and 55 (11%) affected by preterm birth who were also a health professional. Although the top priority was the same for all types of voter, there was variation in how other questions were ranked.Following review by the Steering Group, the top 30 questions were then taken to the prioritisation workshop. A list of top 15 questions was agreed, but with some clear differences in priorities between people affected by preterm birth and healthcare professionals.ConclusionsThese research questions prioritised by a partnership process between service users and healthcare professionals should inform the decisions of those who plan to fund research. Priorities of people affected by preterm birth were sometimes different from those of healthcare professionals, and future priority setting partnerships should consider reporting these separately, as well as in total.

Research priorities in children requiring elective surgery for conditions affecting the lower limbs: a James Lind Alliance Priority Setting Partnership

ObjectiveTo identify and prioritise research questions concerning the elective surgical management of children with conditions affecting the lower limb by engaging patients, carers and healthcare professionals.DesignA modified nominal group technique.SettingUK.Participants388...

Setting priorities in child health research in India for 2016-2025: a CHNRI exercise undertaken by the Indian Council for Medical Research and INCLEN Trust.

BackgroundMillennium Development Goal 4 (MDGs) mobilised countries to reduce child mortality by two thirds the 1990 rate in 2015. While India did not reach MDG 4, it considerably reduced child mortality in the MDG-era. Efficient and targeted interventions and adequate monitoring are necessary to further progress in improvements to child health. Looking forward to the Sustainable Development Goal (SDG)-era, the Indian Council of Medical Research and The INCLEN Trust International conducted a national research priority setting exercise for maternal, child, newborn health, and maternal and child nutrition. Here, results are reported for child health.MethodsThe Child Health and Nutrition Research Initiative (CHNRI) method for research priority setting was employed. Research ideas were crowd-sourced from a network of child health experts from across India; these were refined and consolidated into research options (ROs) which were scored against five weighted criteria to arrive weighted Research Priority Scores (wRPS). National and regional priority lists were prepared.Results90 experts contributed 596 ideas that were consolidated into 101 research options (ROs). These were scored by 233 experts nationwide. National wRPS for ROs ranged between 0.92 and 0.51. The majority of the top research priorities related to development of cost-effective interventions and their implementation, and impact evaluations, improving data quality; and monitoring of existing programs, or improving the management of morbidities. The research priorities varied between regions, the Economic Action Group and North-Eastern states prioritised questions relating to delivering interventions at community- or household-level, whereas the North-Eastern states and Union Territories prioritised research questions involving managing and measuring malaria, and the Southern and Western states prioritised research questions involving pharmacovigilance of vaccines, impact of newly introduced vaccines, and delivery of vaccines to hard-to-reach populations.ConclusionsResearch priorities varied geographically, according the stage of development of the area and mostly pertained to implementation sciences, which was expected given diversity in epidemiological profiles. Priority setting should help guide investment decisions by national and international agencies, therefore encouraging researchers to focus on priority areas. The ICMR has launched a grants programme for implementation research on maternal and child health to pursue research priorities identified by this exercise.

Joint production of research priorities to improve the lives of those with childhood onset conditions that impair learning: the James Lind Alliance Priority Setting Partnership for ‘learning difficulties’

ObjectivesTo engage children and young people with conditions that impair learning, their parents/carers and the health, education, social work and third sector professionals to identify and prioritise research questions for...