Project description:BackgroundBased on subjective experience, patients can identify research priorities important for health services research. A systematic method for priority setting has been developed by the James Lind Alliance.ObjectiveThis article reviews the literature on the research priorities of patients, caregivers and health-care professionals and presents the prioritized research themes and prioritization methods used.Search strategyThree electronic databases were searched on 22 May 2018. The search was not limited to any time period or language.Inclusion criteriaThe included studies reported the identification and prioritization of research priorities involving patients, relatives and caregivers. Each included paper addressed a specific ICD-coded health problem, and at least one-third of the sample involved in the prioritization process was affected by the health problem.Data extraction and synthesisThe 10 top-ranked research priorities were included in the thematic analysis. With an inductive approach, a system of identified themes and subthemes was developed from the research priorities. Each research priority was assigned to one research theme.Main resultsThe priority lists of 34 publications involving 331 research priorities were included. Nine main themes represent the content of the research priorities. The most frequently represented main themes are 'Treatment', 'Patients' and 'Health condition'. The distribution of the research priorities varied depending on the health conditions and prioritization methods.Discussion and conclusionsThis review provides a comprehensive overview of the overarching research themes in research priorities of affected individuals. The results can guide future patient-oriented research.
Project description:OBJECTIVE:To identify research priorities of consumers and other stakeholders to inform Cochrane Reviews in 'health communication and participation' (including such concepts as patient experience, shared decision-making and health literacy). SETTING:International. PARTICIPANTS:We included anyone with an interest in health communication and participation. Up to 151 participants (18-80 years; 117 female) across 12 countries took part, including 48 consumers (patients, carers, consumer representatives) and 75 professionals (health professionals, policymakers, researchers) (plus 25 people who identified as both). DESIGN:Survey. METHODS:We invited people to submit their research ideas via an online survey open for 4?weeks. Using inductive thematic analysis, we generated priority research topics, then classified these into broader themes. RESULTS:Participants submitted 200 research ideas, which we grouped into 21 priority topics. Key research priorities included: insufficient consumer involvement in research (19 responses), 'official' health information is contradictory and hard to understand (18 responses), communication/coordination breakdowns in health services (15 responses), health information provision a low priority for health professionals (15 responses), insufficient eliciting of patient preferences (14 responses), health services poorly understand/implement patient-centred care (14 responses), lack of holistic care impacting healthcare quality and safety (13 responses) and inadequate consumer involvement in service design (11 responses). These priorities encompassed acute and community health settings, with implications for policy and research. Priority populations of interest included people from diverse cultural and linguistic backgrounds, carers, and people with low educational attainment, or mental illness. Most frequently suggested interventions focused on training and cultural change activities for health services and health professionals. CONCLUSIONS:Consumers and other stakeholders want research addressing structural and cultural challenges in health services (eg, lack of holistic, patient-centred, culturally safe care) and building health professionals' communication skills. Solutions should be devised in partnership with consumers, and focus on the needs of vulnerable groups.
Project description:BackgroundMaternal mortality has declined by nearly half since 1990, but over a quarter million women still die every year of causes related to pregnancy and childbirth. Maternal-health related targets are falling short of the 2015 Millennium Development Goals and a post-2015 Development Agenda is emerging. In connection with this, setting global research priorities for the next decade is now required.MethodsWe adapted the methods of the Child Health and Nutrition Research Initiative (CHNRI) to identify and set global research priorities for maternal and perinatal health for the period 2015 to 2025. Priority research questions were received from various international stakeholders constituting a large reference group, and consolidated into a final list of research questions by a technical working group. Questions on this list were then scored by the reference working group according to five independent and equally weighted criteria. Normalized research priority scores (NRPS) were calculated, and research priority questions were ranked accordingly.ResultsA list of 190 priority research questions for improving maternal and perinatal health was scored by 140 stakeholders. Most priority research questions (89%) were concerned with the evaluation of implementation and delivery of existing interventions, with research subthemes frequently concerned with training and/or awareness interventions (11%), and access to interventions and/or services (14%). Twenty-one questions (11%) involved the discovery of new interventions or technologies.ConclusionsKey research priorities in maternal and perinatal health were identified. The resulting ranked list of research questions provides a valuable resource for health research investors, researchers and other stakeholders. We are hopeful that this exercise will inform the post-2015 Development Agenda and assist donors, research-policy decision makers and researchers to invest in research that will ultimately make the most significant difference in the lives of mothers and babies.
Project description:BACKGROUND: As women get older, their health priorities change. We surveyed a sample of older Canadian women to investigate what health priorities are of concern to them, their perceptions about the care delivered to address these priorities and the extent to which priorities and perceptions of care differ across age groups and provinces. METHODS: The WOW (What Older women Want) cross-sectional health survey was mailed in October 2003 to 5000 community-dwelling women aged 55-95 years from 10 Canadian provinces. Women were asked questions on 26 health priorities according to the World Health Organization's International Classification of Functioning, Disability and Health, and their perceptions of whether these priorities were being addressed by health care providers through screening or counselling. Differences in priorities and perceptions of care delivery were examined across age groups and provinces. RESULTS: The response rate was 52%. The mean age of the respondents was 71 (standard deviation 7) years. The health priorities identified most frequently by the respondents were preventing memory loss (88% of the respondents), learning about the side effects of medications (88%) and correcting vision impairment (86%). Items least frequently selected were counselling about community programs (28%), counselling about exercise (33%) and pneumonia vaccination (33%). Up to 97% of the women recalled being adequately screened for heart disease and stroke risk factors, but as little as 11% reported receiving counselling regarding concerns about memory loss or end-of-life issues. Women who stated that specific priorities were of great concern or importance to them were more than twice as likely as those who stated that they were not of great concern or importance to perceive that these priorities were being addressed: osteoporosis (odds ratio [OR] 2.6, 95% confidence interval [CI] 2.1- 3.2), end-of-life care (OR 2.6, 95% CI 2.0-3.4), anxiety reduction (OR 2.2, 95% CI 1.8-2.6), fall prevention (OR 2.1, 95% CI 1.6-2.7), stroke (OR 2.1, 95% CI 1.4-3.0), depression (OR 2.1, 95% CI 1.7-2.7) and urinary incontinence (OR 2.1, 95% CI 1.7-2.5). The respondents' perceptions of care delivery varied across age groups and provinces. INTERPRETATION: According to the perceptions of surveyed women, health care providers are addressing many, but not all, of their health concerns, especially those that are of great concern or importance to these women.
Project description:ObjectiveThe impact of consumer-driven health plans (CDHPs) has primarily been studied in a small number of large, self-insured employers, but this work may not generalize to the wide array of firms that make up the overall economy. The goal of our research is to examine effects of health savings accounts (HSAs) on total, medical, and pharmacy spending for a large number of small and midsized firms.Data sourcesHealth plan administrative data from a national insurer were used to measure spending for 76,310 enrollees over 3 years in 709 employers. All employers began offering a HSA-eligible plan either on a full-replacement basis or alongside traditional plans in 2006 and 2007 after previously offering only traditional plans in 2005.Study designWe employ difference-in-differences generalized linear regression models to examine the impact of switching to HSAs. DATA EXTRACTION METHODS; Claims data were aggregated to enrollee-years.Principal findingsFor total spending, HSA enrollees spent roughly 5-7 percent less than non-HSA enrollees. For pharmacy spending, HSA enrollees spent 6-9 percent less than traditional plan enrollees. More of the spending decrease was observed in the first year of enrollment.ConclusionsOur findings are consistent with the notion that CDHP benefit designs affect decisions that are at the discretion of the consumer, such as whether to fill or refill a prescription, but have less effect on care decisions that are more at the discretion of the provider.
Project description:The objective of this workshop was to determine current nursing research priorities in critical care, adult pulmonary, and sleep conditions through input from consumer (patient, family, and formal and informal caregivers) and nursing experts around the world. Working groups composed of nurses and patients selected potential research priorities based on patient insight and a literature review of patient-reported outcomes, patient-reported experiences, and processes and clinical outcomes in the focal areas. A Delphi consensus approach, using a qualitative survey method to elicit expert opinion from nurses and consumers was conducted. Two rounds of online surveys available in English, Spanish, and Chinese were completed. A 75% or greater threshold for endorsement (combined responses from nursing and consumer participants) was determined a priori to retain survey items. A total of 837 participants (649 nurses and 188 patients, family, and/or caregivers) from 45 countries responded. Survey data were analyzed and nursing research priorities that comprise 23 critical care, 45 adult pulmonary, and 16 sleep items were identified. This project was successful in engaging a wide variety of nursing and consumer experts, applying a patient-reported outcome/patient-reported experience framework for organizing and understanding research priorities. The project outcome was a research agenda to inform, guide, and aid nurse scientists, educators, and providers, and to advise agencies that provide research and program funding in these fields.
Project description:BACKGROUND:Noninvasive telemonitoring (TM) can be used in heart failure (HF) patients to perform early detection of decompensation at home, prevent unnecessary health care utilization, and decrease health care costs. However, the evidence is not sufficient to be part of HF guidelines for follow-up care, and we have no knowledge of how TM is used in the Nordic Baltic region. OBJECTIVE:The aim of this study was to describe health care professionals' (HCPs) perception of and presumed experience with noninvasive TM in daily HF patient care, perspectives of the relevance of and reasons for applying noninvasive TM, and barriers to the use of noninvasive TM. METHODS:A cross-sectional survey was performed between September and December 2016 in Norway and Lithuania with physicians and nurses treating HF patients at either a hospital ward or an outpatient clinic. A total of 784 questionnaires were sent nationwide by postal mail to 107 hospitals. The questionnaire consisted of 43 items with close- and open-ended questions. In Norway, the response rate was 68.7% (226/329), with 57 of 60 hospitals participating, whereas the response rate was 68.1% (310/455) in Lithuania, with 41 of 47 hospitals participating. Responses to the closed questions were analyzed using descriptive statistics, and the open-ended questions were analyzed using summative content analysis. RESULTS:This study showed that noninvasive TM is not part of the current daily clinical practice in Norway or Lithuania. A minority of HCPs responded to be familiar with noninvasive TM in HF care in Norway (48/226, 21.2%) and Lithuania (64/310, 20.6%). Approximately half of the HCPs in both countries perceived noninvasive TM to be relevant in follow-up of HF patients in Norway (131/226, 58.0%) and Lithuania (172/310, 55.5%). For physicians in both countries and nurses in Norway, the 3 most mentioned reasons for introducing noninvasive TM were to improve self-care, to reduce hospitalizations, and to provide high-quality care, whereas the Lithuanian nurses described ability to treat more patients and to reduce their workload as reasons for introducing noninvasive TM. The main barriers to implement noninvasive TM were lack of funding from health care authorities or the Territorial Patient Fund. Moreover, HCPs perceive that HF patients themselves could represent barriers because of their physical or mental condition in addition to a lack of internet access. CONCLUSIONS:HCPs in Norway and Lithuania are currently nonusers of TM in daily HF care. However, they perceive a future with TM to improve the quality of care for HF patients. Financial barriers and HF patients' condition may have an impact on the use of TM, whereas sufficient funding from health care authorities and improved knowledge may encourage the more widespread use of TM in the Nordic Baltic region and beyond.
Project description:The distribution of health care payments to insurance plans has substantial consequences for social policy. Risk adjustment formulas predict spending in health insurance markets in order to provide fair benefits and health care coverage for all enrollees, regardless of their health status. Unfortunately, current risk adjustment formulas are known to underpredict spending for specific groups of enrollees leading to undercompensated payments to health insurers. This incentivizes insurers to design their plans such that individuals in undercompensated groups will be less likely to enroll, impacting access to health care for these groups. To improve risk adjustment formulas for undercompensated groups, we expand on concepts from the statistics, computer science, and health economics literature to develop new fair regression methods for continuous outcomes by building fairness considerations directly into the objective function. We additionally propose a novel measure of fairness while asserting that a suite of metrics is necessary in order to evaluate risk adjustment formulas more fully. Our data application using the IBM MarketScan Research Databases and simulation studies demonstrates that these new fair regression methods may lead to massive improvements in group fairness (eg, 98%) with only small reductions in overall fit (eg, 4%).
Project description:BackgroundThe World Health Organization's "Coordinated Global Research Roadmap: 2019 Novel Coronavirus" outlined the need for research that focuses on the impact of COVID-19 on pregnant women and children. More than one year after the first reported case significant knowledge gaps remain, highlighting the need for a coordinated approach. To address this need, the Maternal, Newborn and Child Health Working Group (MNCH WG) of the COVID-19 Clinical Research Coalition conducted an international survey to identify global research priorities for COVID-19 in maternal, reproductive and child health.MethodThis project was undertaken using a modified Delphi method. An electronic questionnaire was disseminated to clinicians and researchers in three different languages (English, French and Spanish) via MNCH WG affiliated networks. Respondents were asked to select the five most urgent research priorities among a list of 17 identified by the MNCH WG. Analysis of questionnaire data was undertaken to identify key similarities and differences among respondents according to questionnaire language, location and specialty. Following elimination of the seven lowest ranking priorities, the questionnaire was recirculated to the original pool of respondents. Thematic analysis of final questionnaire data was undertaken by the MNCH WG from which four priority research themes emerged.ResultsQuestionnaire 1 was completed by 225 respondents from 29 countries. Questionnaire 2 was returned by 49 respondents. The four priority research themes which emerged from the analysis were 1) access to healthcare during the COVID-19 pandemic, 2) the direct and 3) indirect effects of COVID-19 on pregnant and breastfeeding women and children and 4) the transmission of COVID-19 and protection from infection.ConclusionThe results of these questionnaires indicated a high level of concordance among continents and specialties regarding priority research themes. This prioritized list of research uncertainties, developed to specifically highlight the most urgent clinical needs as perceived by healthcare professionals and researchers, could help funding organizations and researchers to answer the most pressing questions for clinicians and public health professionals during the pandemic. It is hoped that these identified priority research themes can help focus the discussion regarding the allocation of limited resources to enhance COVID-19 research in MNCH globally.
Project description:Background Care for people with an Intellectual Disability (ID) is complex: multiple health care professionals are involved and use different Health Information Systems (HISs) to store medical and daily care information on the same individuals. The objective of this study is to identify the HISs needs of professionals in ID care by addressing the obstacles and challenges they meet in their current HISs. Methods We distributed an online questionnaire amongst Dutch ID care professionals via different professional associations and care providers. 328 respondents answered questions on their HISs. An inventory was made of HIS usage purposes, problems, satisfaction and desired features, with and without stratification on type of HIS and care professional. Results Typical in ID care, two types of HISs are being used that differ with respect to their features and users: Electronic Client Dossiers (ECDs) and Electronic Patient Dossiers (EPDs). In total, the respondents mentioned 52 unique HISs. Groups of care professionals differed in their satisfaction with ECDs only. Both HIS types present users with difficulties related to the specifics of care for people with an ID. Particularly the much needed communication between the many unique HISs was reported a major issue which implies major issues with inter-operability. Other problems seem design-related as well. Conclusion This study can be used to improve current HISs and design new HISs that take ID care professionals requirements into account. Supplementary Information The online version contains supplementary material available at 10.1186/s12913-021-07256-9.