From inclusion to independence--training consumers to review research.
Ontology highlight
ABSTRACT:
SUBMITTER: Saunders C
PROVIDER: S-EPMC2292183 | biostudies-literature | 2008 Mar
REPOSITORIES: biostudies-literature
Publications
From inclusion to independence--training consumers to review research.
Saunders Carla C Girgis Afaf A Butow Phyllis P Crossing Sally S Penman Andrew A
Health research policy and systems 20080309
Health and medical research invariably impacts on the lives of everyday people. Organisations in the developed world are increasingly involving the public in health research projects, and research governance structures and processes. The form the involvement takes varies, as does the level of involvement, from individuals, to groups, to the wider community. Lay community members can be trained to independently review health and medical research, and wider societal involvement in funding decision ...[more]
Similar Datasets
Project description:Qualitative systematic reviews or qualitative evidence syntheses (QES) are increasingly recognised as a way to enhance the value of systematic reviews (SRs) of clinical trials. They can explain the mechanisms by which interventions, evaluated within trials, might achieve their effect. They can investigate differences in effects between different population groups. They can identify which outcomes are most important to patients, carers, health professionals and other stakeholders. QES can explore the impact of acceptance, feasibility, meaningfulness and implementation-related factors within a real world setting and thus contribute to the design and further refinement of future interventions. To produce valid, reliable and meaningful QES requires systematic identification of relevant qualitative evidence. Although the methodologies of QES, including methods for information retrieval, are well-documented, little empirical evidence exists to inform their conduct and reporting.This structured methodological overview examines papers on searching for qualitative research identified from the Cochrane Qualitative and Implementation Methods Group Methodology Register and from citation searches of 15 key papers.A single reviewer reviewed 1299 references. Papers reporting methodological guidance, use of innovative methodologies or empirical studies of retrieval methods were categorised under eight topical headings: overviews and methodological guidance, sampling, sources, structured questions, search procedures, search strategies and filters, supplementary strategies and standards.This structured overview presents a contemporaneous view of information retrieval for qualitative research and identifies a future research agenda. This review concludes that poor empirical evidence underpins current information practice in information retrieval of qualitative research. A trend towards improved transparency of search methods and further evaluation of key search procedures offers the prospect of rapid development of search methods.
| S-EPMC4855695 | biostudies-other
Project description:The All of Us Research Program (All of Us) is a national effort to accelerate health research by exploring the relationship between lifestyle, environment, and genetics. It is set to become one of the largest research efforts in U.S. history, aiming to build a national resource of data from at least one million participants. All of Us aims to address the need for more diversity in research and set the stage for that diversity to be leveraged in precision medicine research to come. This paper describes how the program assessed demographic characteristics of participants who have enrolled in other U.S. biomedical research cohorts to better understand which groups are traditionally represented or underrepresented in biomedical research. We 1) reviewed the enrollment characteristics of national cohort studies like All of Us, and 2) surveyed the literature, focusing on key diversity categories essential to the program's enrollment aims. Based on these efforts, All of Us emphasizes enrollment of racial and ethnic minorities, and has formally designated the following additional groups as historically underrepresented: individuals-with inadequate access to medical care; under the age of 18 or over 65; with an annual household income at or below 200% of the federal poverty level; who have a cognitive or physical disability; have less than a high school education or equivalent; are intersex; identify as a sexual or gender minority; or live in rural or non-metropolitan areas. Research accounting for wider demographic variability is critical. Only by ensuring diversity and by addressing the very barriers that limit it, can we position All of Us to better understand and tackle health disparities.
| S-EPMC7329113 | biostudies-literature
Project description:Poor self-awareness co-occurs with cognitive impairments after stroke and may influence independence in daily activities. Strategy training promotes independence after stroke, but poor awareness may attenuate treatment response. We examined the degree to which awareness status affected changes in independence attributed to strategy training.We conducted a secondary analysis of 30 participants with cognitive impairments after acute stroke randomized to strategy training or attention control in addition to typical inpatient rehabilitation. We measured awareness with the Self-Awareness of Deficits Interview and independence with the FIM™. Data were analyzed using general linear models.Poor awareness attenuated improvements in independence over time, F(3, 55) = 3.04, p = .038. Strategy training promoted greater improvements in independence over time relative to attention control, F(3, 55) = 5.93, p = .002. However, the interaction between awareness and intervention was not significant, F(1, 19) = 0.025, p = .877.Awareness status may not affect the response to strategy training, indicating that strategy training may benefit people with poor awareness.
| S-EPMC5744716 | biostudies-literature
Project description:Foodborne illness has a substantial health and economic burden on society, and most cases are believed to be due to unsafe food handling practices at home. Several qualitative research studies have been conducted to investigate consumers' perspectives, opinions, and experiences with safe food handling at home, and these studies provide insights into the underlying barriers and facilitators affecting their safe food handling behaviours. We conducted a systematic review of previously published qualitative studies in this area to synthesize the main across-study themes and to develop recommendations for future consumer interventions and research. The review was conducted using the following steps: comprehensive search strategy; relevance screening of abstracts; relevance confirmation of articles; study quality assessment; thematic synthesis of the results; and quality-of-evidence assessment. A total of 39 relevant articles reporting on 37 unique qualitative studies were identified. Twenty-one barriers and 10 facilitators to safe food handling were identified, grouped across six descriptive themes: confidence and perceived risk; knowledge-behaviour gap; habits and heuristics; practical and lifestyle constraints; food preferences; and societal and social influences. Our overall confidence that each barrier and facilitator represents the phenomenon of interest was rated as high (n = 11), moderate (11), and low (9). Overarching analytical themes included: 1) safe food handling behaviours occur as part of a complex interaction of everyday consumer practices and habituation; 2) most consumers are not concerned about food safety and are generally not motivated to change their behaviours based on new knowledge about food safety risks; and 3) consumers are amenable to changing their safe food handling habits through relevant social pressures. Key implications and recommendations for research, policy and practice are discussed.
| S-EPMC5132243 | biostudies-literature
Project description:An increasing number of behavioral and psychosocial cancer interventions incorporate new media elements that are digital, networked, and interactive. However, it is unclear to what extent new media is being leveraged to benefit underserved racial and ethnic groups who disproportionately bear the burden of cancer. This inquiry is timely in light of growing evidence that these groups are receptive to new media. A systematic literature review was conducted to assess the inclusion of these groups in research on cancer-related new media interventions and use of new media to reduce racial and ethnic cancer disparities.A systematic search of three databases was conducted for articles published between January 2000 and March 2012 that presented studies of user experience with a behavioral or psychosocial cancer-related intervention with at least one new media component.Thirty-six articles were included in the final review. In about one-quarter of the studies, less than 20% of participants were African American, Latino, Asian American, or American Indian. In less than 10% of the studies, 80% or more of the samples were members of the aforementioned groups. Almost one-third of the studies reviewed were categorized as disparity focused but limited data were available on racial and ethnic differences in responses to new media interventions.Findings suggest that the promise and potential of new media cancer interventions are largely unrealized among the underserved. Additional research is needed to investigate a wide range of issues related to the development and delivery of such interventions in diverse racial and ethnic groups.
| S-EPMC3881998 | biostudies-literature
Project description:PURPOSE:Including people with disabilities in precision medicine research (PMR) is key for increasing cohorts' diversity, improving understanding of population health, and attaining social justice for the United States' largest health disparities group. We conducted a national survey to explore the views of people with disabilities about PMR. METHODS:An online survey was developed in disability-accessible formats. Key questions included views on PMR, willingness to participate and to provide data, perceived barriers to participation and potential remedies, and interest in engagement in the study. Analyses described results for all participants and compared results for key demographic characteristics. RESULTS:In total, 1294 participants completed the survey. Participants expressed strong support for PMR, and willingness to participate in PMR; to provide lifestyle, biological, and medical information; and to engage with the study. However, 76% identified a total of 3 to 8 barriers to participation, and most would not provide environmental samples or information from their social media account(s) and activity trackers. Differences were observed across racial, ethnic, and gender groups and are discussed. CONCLUSIONS:Barriers to disability inclusion need to be removed, and further research conducted to better understand concerns about PMR and to develop studies that resonate with the interests and needs of this population.
| S-EPMC6755064 | biostudies-literature
Project description:The Community Research Fellows Training (CRFT) Program promotes the role of underserved populations in research by enhancing the capacity for community-based participatory research (CBPR). CRFT consists of 12 didactic training sessions and 3 experiential workshops intended to train community members in research methods and evidence-based public health. The training (a) promotes partnerships between community members and academic researchers, (b) enhances community knowledge of public health research, and (c) trains community members to become critical consumers of research. Fifty community members participated in training sessions taught by multidisciplinary faculty. Forty-five (90%) participants completed the program. Findings demonstrate that the training increased awareness of health disparities, research knowledge, and the capacity to use CBPR as a tool to address disparities.
| S-EPMC4605821 | biostudies-literature
Project description:Progressive independence in patient care activities is imperative for residents' readiness for practice and patient safety of those cared for by graduates of residency programs. However, establishing a standardized system of progressive independence is an ongoing challenge in graduate medical education.We aggregated trainees' perspectives on progressive independence, developed a model of the ideal state, and suggested actionable improvements.A multispecialty, nationally representative group of trainees conducted a structured exercise that (1) described the attributes of an ideal system of graduated responsibility; (2) compared the current system to that ideal; (3) developed benchmarks to reinforce best practices; and (4) identified approaches to motivate programs to adopt best practices.At the core of an ideal model of graduated responsibility is a well-structured curriculum and assessment of individual learners using educational milestones and patient outcomes. The ideal model also includes robust faculty development and emphasizes faculty mentorship. To address legal and financial restrictions that pose barriers to progressive independent, objective outcome criteria like the milestones could be used to ask payers to alter payment restrictions for work performed by senior trainees, providing financial incentives for programs to encourage appropriate independent practice. Recognition of high-performing programs at the national level could motivate others to adopt best practices.A multifaceted approach, incorporating robust 2-way feedback about skill level and autonomy between residents and faculty, along with improved faculty development in this area, is needed to optimize residents' attainment of progressive independence. There are incentives to move programs and institutions toward this optimal model.
| S-EPMC4675449 | biostudies-literature
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.
| S-EPMC5942413 | biostudies-literature
Project description:OBJECTIVE:The peer review of completed Patient-Centered Outcomes Research Institute (PCORI) funded research includes reviews from patient reviewers (patients, caregivers, and patient advocates). Very little is known about how best to support these reviewers in writing helpful comments from a patient-centred perspective. This study aimed to evaluate the effect of a new training in peer review for patient reviewers. DESIGN:Observational study. SETTING:Online. PARTICIPANTS:Adults registered in the PCORI Reviewer Database as a patient stakeholder. INTERVENTION:A new online training in peer review. MAIN OUTCOME MEASURES:Changes in reviewers' knowledge and skills; change in self-efficacy and attitudes, satisfaction with the training and perceived benefits and relevance of the training. RESULTS:Before-after training survey data were analysed for 37 (29.4% of 126) patient reviewers invited to participate in an online training as part of a quality improvement effort or as part of a PCORI peer review. The reviewers improved their answers to the knowledge questions (p<0.001, median number of answers improved 4 (95% CI 3 to 5), large effect size (ES) Cohen's w=0.94) after the training, particularly in the questions targeting the specifics of PCORI peer review. Reviewers improved their skills in recognising helpful review comments, but those without peer-review background improved proportionally more (p=0.008, median number of answers improved 2 (95% CI 1 to 3), medium ES w=0.60). The use of training modestly increased reviewers' confidence in completing a high-quality peer review (p=0.005, mean increase in 5-point Likert rating 0.51 (95% CI 0.17 to 0.86), small-to-medium ES Cliff's delta=0.32) and their excitement about providing a review slightly increased (p=0.019, mean increase in 5-point Likert rating 0.35 (95% CI 0.03 to 0.68), small ES delta=0.19). All reviewers were satisfied with the training and would recommend it to other reviewers. CONCLUSIONS:Training improved knowledge, skills and self-efficacy and slightly increased enthusiasm for completing a PCORI peer review.
| S-EPMC6756350 | biostudies-literature