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Setting the research agenda for living with and beyond cancer with comorbid illness: reflections on a research prioritisation exercise.

ABSTRACT: Background:People living with and beyond cancer are more likely to have comorbid conditions and poorer mental and physical health, but there is a dearth of in-depth research exploring the psychosocial needs of people experiencing cancer and comorbid chronic conditions. A patient partnership approach to research prioritisation and planning can ensure outcomes meaningful to those affected and can inform policy and practice accordingly, but can be challenging. Methods:We aimed to inform priorities for qualitative inquiry into the experiences and support needs of people living with and beyond cancer with comorbid illness using a partnership approach. A three-step process including a patient workshop to develop a consultation document, online consultation with patients, and academic expert consultation was carried out. The research prioritisation process was also appraised and reflected upon. Results:Six people attended the workshop, ten responded online and eight academic experts commented on the consultation document. Five key priorities were identified for exploration in subsequent qualitative studies, including the diagnostic journey, the burden of symptoms, managing medications, addressing the needs of informal carers, and service provision. Limitations of patient involvement and reflections on procedural ethics, and the challenge of making measurable differences to patient outcomes were discussed. Conclusions:Findings from this research prioritisation exercise will inform planned qualitative work to explore patients' experiences of living with and beyond cancer with comorbid illness. Including patient partners in the research prioritisation process adds focus and relevance, and feeds into future work and recommendations to improve health and social care for this group of patients. Reflections on the consultation process contribute to a broadening of understanding the field of patient involvement.

SUBMITTER: Cavers D

PROVIDER: S-EPMC7191759 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Setting the research agenda for living with and beyond cancer with comorbid illness: reflections on a research prioritisation exercise.

Cavers D D Cunningham-Burley S S Watson E E Banks E E Campbell C C

Research involvement and engagement 20200429

<h4>Background</h4>People living with and beyond cancer are more likely to have comorbid conditions and poorer mental and physical health, but there is a dearth of in-depth research exploring the psychosocial needs of people experiencing cancer and comorbid chronic conditions. A patient partnership approach to research prioritisation and planning can ensure outcomes meaningful to those affected and can inform policy and practice accordingly, but can be challenging.<h4>Methods</h4>We aimed to inf ...[more]

PMID: 32368351

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Project description:BackgroundEmploying malaria operational research (MOR) findings in planning national malaria control programmes is gaining increased attention. The malaria control foci are diverse, resources are limited; therefore, agreeing on priority areas is critical. Hitherto, the process of prioritising MOR questions in Nigeria has been limited to few stakeholders. In support of the National Malaria Elimination Programme's (NMEP) effort at setting a MOR agenda, the Nigeria Field Epidemiology and Laboratory Training Programme (NFELTP) in collaboration with NMEP conducted preliminary exploratory study to identify key malaria research gaps and needs, and provide data to inform setting a robust national MOR agenda. The process of generating data is presented in this paper.MethodsA twelve-member task-team comprising NFELTP, university researchers and NMEP officers was commissioned. Following an inaugural meeting the task-team developed a framework of activities and held five planning meetings, conducted five-week online and self-administered paper-based surveys, key informant interview (KII), two-day desk review workshop, seven-day qualitative data analysis, ten-day result and five-day report writing workshops. Paired group members conducted the interviews across six geopolitical zones of Nigeria. Abridged study report was used for a two-day MOR setting agenda stakeholders' workshop.ResultsA structured framework, study protocol and data collection instruments were developed and submitted for ethical approval. The instruments included survey questionnaire for detailed information on researchers and other stakeholders' experience with MOR, the gaps and needs in thematic MOR areas; KII and Delphi guides. After an initial scoping review, primary data were collected from purposively selected survey participants using mixed methods: - online survey (n?=?100), self-administered paper-based survey (n?=?85), KII (n?=?40), desk review workshop (n?=?22) and Delphi interviews (n?=?8). Comprehensive lists of research gaps/bottlenecks and needs were generated for each thematic area in malaria control. These were used at a two-day national MOR setting stakeholder workshop (n?=?54) to guide the development of national MOR agenda document.ConclusionsA systematic approach involving broad stakeholder engagement provided data and evidence-based information for development of a robust national MOR agenda. The processes involved are recommended for use in malaria endemic settings.

Project description:Objectives:Medication errors continue to contribute substantially to global morbidity and mortality. In the context of the recent launch of the World Health Organization's (WHO) Third Global Patient Safety Challenge: Medication Without Harm, we sought to establish agreement on research priorities for medication safety. Methods:We undertook a consensus prioritisation exercise using an approach developed by the Child Health and Nutrition Research Initiative. Based on a combination of productivity and citations, we identified leading researchers in patient and medication safety and invited them to participate. We also extended the invitation to a further pool of experts from the WHO Global Patient Safety Network. All experts independently generated research ideas, which they then independently scored based on the criteria of: answerability, effectiveness, innovativeness, implementation, burden reduction and equity. An overall Research Priority Score and Average Expert Agreement were calculated for each research question. Findings:131 experts submitted 333 research ideas, and 42 experts then scored the proposed research questions. The top prioritised research areas were: (1) deploying and scaling technology to enhance medication safety; (2) developing guidelines and standard operating procedures for high-risk patients, medications and contexts; (3) score-based approaches to predicting high-risk patients and situations; (4) interventions to increase patient medication literacy; (5) focused training courses for health professionals; and (6) universally applicable pictograms to avoid medication-related harm. Whilst there was a focus on promoting patient education and involvement across resource settings, priorities identified in high-resource settings centred on the optimisation of existing systems through technology. In low- and middle-resource settings, priorities focused on identifying systemic issues contributing to high-risk situations. Conclusions:WHO now plans to work with global, regional and national research funding agencies to catalyse the investment needed to enable teams to pursue these research priorities in medication safety across high-, middle- and low-resource country settings.

Project description:BackgroundOver 40% of all deaths among children under 5 are neonatal deaths (0-28 days), and this proportion is increasing. In 2012, 2.9 million newborns died, with 99% occurring in low- and middle-income countries. Many of the countries with the highest neonatal mortality rates globally are currently or have recently been affected by complex humanitarian emergencies. Despite the global burden of neonatal morbidity and mortality and risks inherent in complex emergency situations, research investments are not commensurate to burden and little is known about the epidemiology or best practices for neonatal survival in these settings.MethodsWe used the Child Health and Nutrition Research Initiative (CHNRI) methodology to prioritize research questions on neonatal health in complex humanitarian emergencies. Experts evaluated 35 questions using four criteria (answerability, feasibility, relevance, equity) with three subcomponents per criterion. Using SAS 9.2, a research prioritization score (RPS) and average expert agreement score (AEA) were calculated for each question.ResultsTwenty-eight experts evaluated all 35 questions. RPS ranged from 0.846 to 0.679 and the AEA ranged from 0.667 to 0.411. The top ten research priorities covered a range of issues but generally fell into two categories- epidemiologic and programmatic components of neonatal health. The highest ranked question in this survey was "What strategies are effective in increasing demand for, and use of skilled attendance?"ConclusionsIn this study, a diverse group of experts used the CHRNI methodology to systematically identify and determine research priorities for neonatal health and survival in complex humanitarian emergencies. The priorities included the need to better understand the magnitude of the disease burden and interventions to improve neonatal health in complex humanitarian emergencies. The findings from this study will provide guidance to researchers and program implementers in neonatal and complex humanitarian fields to engage on the research priorities needed to save lives most at risk.

Project description:BackgroundGlobally, there is renewed interest in and momentum for strengthening community health systems, as also emphasized by the recent Astana Declaration. Recent reviews have identified factors critical to successful community health worker (CHW) programs but pointed to significant evidence gaps. This review aims to propose a global research agenda to strengthen CHW programs.Methods and resultsWe conducted a search for extant systematic reviews on any intermediate factors affecting the effectiveness of CHW programs in February 2018. A total of 30 articles published after year 2000 were included. Data on research gaps were abstracted and summarized under headings based on predominant themes identified in the literature. Following this data gathering phase, two technical advisory groups comprised of experts in the field of community health-including policymakers, implementors, researchers, advocates and donors-were convened to discuss, validate, and prioritize the research gaps identified. Research gap areas that were identified in the literature and validated through expert consultation include selection and training of CHWs, community embeddedness, institutionalization of CHW programs (referrals, supervision, and supply chain), CHW needs including incentives and remuneration, governance and sustainability of CHW programs, performance and quality of care, and cost-effectiveness of CHW programs. Priority research questions included queries on effective policy, financing, governance, supervision and monitoring systems for CHWs and community health systems, implementation questions around the role of digital technologies, CHW preferences, and drivers of CHW motivation and retention over time.ConclusionsAs international interest and investment in CHW programs and community health systems continue to grow, it becomes critical not only to analyze the evidence that exists, but also to clearly define research questions and collect additional evidence to ensure that CHW programs are effective, efficient, equity promoting, and evidence based. Generally, the literature places a strong emphasis on the need for higher quality, more robust research.

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Setting the research agenda for living with and beyond cancer with comorbid illness: reflections on a research prioritisation exercise.

Publications

Setting the research agenda for living with and beyond cancer with comorbid illness: reflections on a research prioritisation exercise.

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