Barriers and facilitators to qualitative data sharing in the United States: A survey of qualitative researchers.
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ABSTRACT:
SUBMITTER: Mozersky J
PROVIDER: S-EPMC8719660 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectivesPrenatal detection of congenital heart disease with obstetric screening remains at less than 50% in most population studies, far from what is thought to be achievable. We sought to identify barriers/facilitators for screening from the perspective of interpreting physicians and to understand how these barriers/facilitators may be associated with interpretation of screening images.MethodsOur mixed-methods studies included 4 focus groups in centers across the United States with obstetric, maternal-fetal medicine, and radiology providers who interpreted obstetric ultrasound studies. Themes around barriers/facilitators for fetal heart screening were coded from transcripts. A national Web-based survey was then conducted, which quantitatively measured reported barriers/facilitators and measured physicians' ability to interpret fetal heart-screening images. Multivariable generalized linear random-effect models assessed the association between barriers/facilitators and the accuracy of image interpretation at the image level.ResultsThree main themes were identified in the focus groups: intrinsic barriers (ie, comfort with screening), external barriers (ie, lack of feedback), and organizational barriers (ie, study volumes). Among 190 physician respondents, 104 interpreted ultrasound studies. Perceptions of barriers varied by practice setting, with nontertiary providers having lower self-efficacy and perceived usefulness of cardiac screening. Facilitators associated with the odds of accurate interpretation of screening images were knowledge (odds ratio, 2.54; P = .002) and the volume of scans per week (odds ratio, 1.01 for every additional scan; P = .04).ConclusionsSome of the main barriers to cardiac screening identified and prioritized by physicians across the United States were knowledge of screening and minimal volumes of scans. Targeting these barriers will aid in improving prenatal detection of congenital heart disease.
| S-EPMC7357993 | biostudies-literature
Project description:International collaboration in spinal cord injury (SCI) research is necessary to overcome the challenges often encountered by clinicians and researchers, including participant recruitment, high cost, and the need for specialized expertise. However, international collaboration poses its own obstacles. The objective of this study was to conduct an international online survey to assess barriers and facilitators to international SCI clinical research, potential initiatives to facilitate future collaborations, and the use of SCI-specific data sets and standards. Results were analyzed using descriptive statistics. Of 364 total respondents, 213 completed the survey, with the majority of these participants based in North America (38%), Asia (22%), Europe (18%), and Oceania (16%). Over half had more than 10 years of experience in SCI research or clinical practice (57%) and 60% had previous experience with international collaborations. Funding was identified as a top barrier (82%), a facilitator (93%), and a proposed future initiative (97%). Communication and technology were also identified as strong facilitators and proposed future initiatives. The International Standards for Neurological Classification of SCI were used by 69% of participants, the International Standards to document remaining Autonomic Function after SCI by 13% of participants, and the International SCI Data Sets by 45% of participants. As the need for international collaborations in SCI research increases, it is important to identify how clinicians and researchers can be supported by SCI consumer and professional organizations, funders, and networks. Furthermore, unique solutions to overcome modifiable barriers and creation of new facilitators are also needed.
| S-EPMC5793947 | biostudies-literature
Project description:BACKGROUND:Insurance organizations are essential stakeholders in health care ecosystems. For addressing future health care needs, insurance companies require access to health data to deliver preventative and proactive digital health services to customers. However, extant research is limited in examining the conditions that incentivize health data sharing. OBJECTIVE:This study aimed to (1) identify the expectations of insurance customers when sharing health data, (2) determine the perceived intrinsic value of health data, and (3) explore the conditions that aid in incentivizing health data sharing in the relationship between an insurance organization and its customer. METHODS:A Web-based survey was distributed to randomly selected customers from a Finnish insurance organization through email. A single open-text answer was used for a qualitative data analysis through inductive coding, followed by a thematic analysis. Furthermore, the 4 constructs of commitment, power, reciprocity, and trust from the social exchange theory (SET) were applied as a framework. RESULTS:From the 5000 customers invited to participate, we received 452 surveys (response rate: 9.0%). Customer characteristics were found to reflect customer demographics. Of the 452 surveys, 48 (10.6%) open-text responses were skipped by the customer, 57 (12.6%) customers had no expectations from sharing health data, and 44 (9.7%) customers preferred to abstain from a data sharing relationship. Using the SET framework, we found that customers expected different conditions to be fulfilled by their insurance provider based on the commitment, power, reciprocity, and trust constructs. Of the 452 customers who completed the surveys, 64 (14.2%) customers required that the insurance organization meets their data treatment expectations (commitment). Overall, 4.9% (22/452) of customers were concerned about their health data being used against them to profile their health, to increase insurance prices, or to deny health insurance claims (power). A total of 28.5% (129/452) of customers expected some form of benefit, such as personalized digital health services, and 29.9% (135/452) of customers expected finance-related compensation (reciprocity). Furthermore, 7.5% (34/452) of customers expected some form of empathy from the insurance organization through enhanced transparency or an emotional connection (trust). CONCLUSIONS:To aid in the design and development of digital health services, insurance organizations need to address the customers' expectations when sharing their health data. We established the expectations of customers in the social exchange of health data and explored the perceived values of data as intangible goods. Actions by the insurance organization should aim to increase trust through a culture of transparency, commitment to treat health data in a prescribed manner, provide reciprocal benefits through digital health services that customers deem valuable, and assuage fears of health data being used to prevent providing insurance coverage or increase costs.
| S-EPMC7146247 | biostudies-literature
Project description:Missing or inaccessible information about the methods used in scientific research slows the pace of discovery and hampers reproducibility. Yet little is known about how, why, and under what conditions researchers share detailed methods information, or about how such practices vary across social categories like career stage, field, and region. In this exploratory study, we surveyed 997 active researchers about their attitudes and behaviors with respect to methods sharing. The most common approach reported by respondents was private sharing upon request, but a substantial minority (33%) had publicly shared detailed methods information independently of their research findings. The most widely used channels for public sharing were connected to peer-reviewed publications, while the most significant barriers to public sharing were found to be lack of time and lack of awareness about how or where to share. Insofar as respondents were moderately satisfied with their ability to accomplish various goals associated with methods sharing, we conclude that efforts to increase public sharing may wish to focus on enhancing and building awareness of existing solutions-even as future research should seek to understand the needs of methods users and the extent to which they align with prevailing practices of sharing.
| S-EPMC10771089 | biostudies-literature
Project description:BACKGROUND:There has been considerable investment and strategic planning to introduce genomic testing into Australia's public health system. As more patients' genomic data is being held by the public health system, there will be increased requests from researchers to access this data. It is important that public policy reflects public expectations for how genomic data that is generated from clinical tests is used. To inform public policy and discussions around genomic data sharing, we sought public opinions on using genomic data contained in medical records for research purposes in the Australian state of Queensland. METHODS:A total of 1494 participants completed an online questionnaire between February and May 2019. Participants were adults living in Australia. The questionnaire explored participant preferences for sharing genomic data or biological samples with researchers, and concerns about genomic data sharing. RESULTS:Most participants wanted to be given the choice to have their genomic data from medical records used in research. Their expectations on whether and how often they needed to be approached for permission on using their genomic data, depended on whether the data was identifiable or anonymous. Their willingness to sharing data for research purposes depended on the type of information being shared, what type of research would be undertaken and who would be doing the research. Participants were most concerned with genomics data sharing that could lead to discrimination (insurance and employment), data being used for marketing, data security, or commercial use. CONCLUSIONS:Most participants were willing to share their genomic data from medical records with researchers, as long as permission for use was sought. However, the existing policies related to this process in Queensland do not reflect participant expectations for how this is achieved, particularly with anonymous genomics data. This inconsistency may be addressed by process changes, such as inclusion of research in addition to clinical consent or general research data consent programs.
| S-EPMC7678081 | biostudies-literature
Project description:Purpose:The main focus of this study is to assess the knowledge and practices of healthcare practitioners regarding data sharing, security, and confidentiality, with a focus on the use of health data retrieved from electronic health records (EHRs) for research purposes. Methods:A descriptive, cross-sectional, questionnaire-based survey study was conducted across all academic institutions including all researchers in the medical field in Jordan. Personal and administrative practices in data sharing were assessed through collecting data from respondents. Results:The response rate was 22% with an average of 10.25 years of experience in publications. Almost 60% had published at least 1 to 3 studies using EHRs. The prevalence of researchers who "Always" used antivirus software and preserved patient's information was 75.5% and 92.2%, respectively. However, other personal security and confidentiality measures were not satisfactory. Less than half of health data used in the research was "Always" anonymised or encrypted and only around 44.0% had "Always" used sensitive data with more specificity than normal data. Conclusion:Confidentiality and data sharing practices of healthcare practitioners and researchers were generally less than optimal. Efforts from healthcare providers, health institutions, and lawmakers should be put in place to protect the security and confidentiality of electronic patient data.
| S-EPMC6890205 | biostudies-literature
Project description:Research data is increasingly viewed as an important scholarly output. While a growing body of studies have investigated researcher practices and perceptions related to data sharing, information about data-related practices throughout the research process (including data collection and analysis) remains largely anecdotal. Building on our previous study of data practices in neuroimaging research, we conducted a survey of data management practices in the field of psychology. Our survey included questions about the type(s) of data collected, the tools used for data analysis, practices related to data organization, maintaining documentation, backup procedures, and long-term archiving of research materials. Our results demonstrate the complexity of managing and sharing data in psychology. Data is collected in multifarious forms from human participants, analyzed using a range of software tools, and archived in formats that may become obsolete. As individuals, our participants demonstrated relatively good data management practices, however they also indicated that there was little standardization within their research group. Participants generally indicated that they were willing to change their current practices in light of new technologies, opportunities, or requirements.
| S-EPMC8139478 | biostudies-literature
Project description:ImportanceDirecting patients to safer hospitals for complex cancer surgery (regionalization) may prevent thousands of mortalities in the United States.ObjectiveTo understand the potential for individuals to move to safer hospitals: what would inspire them to travel (motivators), what challenges would they face (barriers), and what would enable them to travel (facilitators).Design, setting, and participantsThis nationally representative online survey study asked respondents to consider complex cancer surgery at their local hospital or a hospital specializing in cancer an hour farther away. Completed surveys were weighted across sociodemographics to be nationally representative and outcomes were reported as weighted percentages. In January 2018, a panel of 1817 US adults recruited by address- and telephone-based sampling to be nationally representative were invited to take the survey. Data analysis was conducted from January 24, 2018, to September 19, 2018.Main outcomes and measuresProportion of respondents motivated to travel by specific quality and safety indicators (motivators), magnitude in difference that would be necessary, proportion facing specific barriers, and proportion enabled to move by facilitators. Resistant individuals were identified as people who would not travel except for the largest (top quartile) outcomes differences.ResultsThere were 1016 completed surveys (response rate of 55.9%). The weighted median age was 48 years, 52% were female, median annual income was between $60 000 and $75 000, and 85% lived in a metropolitan area. Nonresponders were more likely than responders to be female, younger, nonwhite, less educated, and lower income (female: 54.4% vs 48.3%; P = .01; younger [aged <45 years]: 56.3% vs 37.1%; P < .001; nonwhite: 41.6% vs 30.0%; P < .001; less than college education: 43.8% vs 32.4%; P < .001; income <$30 000: 22.1% vs 17.1%; P = .01). Superior safety or oncologic outcomes, presented separately, motivated an average of 92% of respondents (95% CI, 90%-94%) to travel. One-third were easily motivated, requiring less than 1% advantage in safety or quality, while 12% were particularly resistant across outcomes. Respondents with lower income (income <$25 000: odds ratio, 2.01; 95% CI, 1.19-3.39) and nonwhite race (odds ratio, 1.60; 95% CI, 1.05-2.42) were more resistant to travel. At least 1 barrier was identified by 74% of respondents (95% CI, 72%-77%), most commonly financial (costs/insurance). However, 94% of respondents (95% CI, 92%-96%) with barriers would travel if provided facilitators, many of which were relatively low cost (transportation, parking, and hotel).Conclusions and relevanceIt appears that most of the US public could be motivated to travel to safer hospitals for complex cancer surgery, yet most would require some support to move. Further efforts to ensure that benefits from regionalization are equitable across sociodemographic strata are indicated.
| S-EPMC6324377 | biostudies-literature
Project description:BackgroundDespite the importance of feedback, the literature suggests that there is inadequate feedback in graduate medical education.ObjectiveWe explored barriers and facilitators that residents in anesthesiology, emergency medicine, obstetrics and gynecology, and surgery experience with giving and receiving feedback during their clinical training.MethodsResidents from 3 geographically diverse teaching institutions were recruited to participate in focus groups in 2012. Open-ended questions prompted residents to describe their experiences with giving and receiving feedback, and discuss facilitators and barriers. Data were transcribed and analyzed using the constant comparative method associated with a grounded theory approach.ResultsA total of 19 residents participated in 1 of 3 focus groups. Five major themes related to feedback were identified: teacher factors, learner factors, feedback process, feedback content, and educational context. Unapproachable attendings, time pressures due to clinical work, and discomfort with giving negative feedback were cited as major barriers in the feedback process. Learner engagement in the process was a major facilitator in the feedback process.ConclusionsResidents provided insights for improving the feedback process based on their dual roles as teachers and learners. Time pressures in the learning environment may be mitigated by efforts to improve the quality of teacher-learner relationships. Forms for collecting written feedback should be augmented by faculty development to ensure meaningful use. Efforts to improve residents' comfort with giving feedback and encouraging learners to engage in the feedback process may foster an environment conducive to increasing feedback.
| S-EPMC4512792 | biostudies-literature
Project description:Introduction: Medications for opioid use disorder (MOUD) reduce illicit opioid use and overdose mortality, but effectiveness remains limited by poor treatment retention. Understanding multilevel barriers and facilitators to retention from the patient perspective can guide intervention strategies to improve retention. Methods: We conducted semi-structured telephone interviews to elicit perspectives of individuals with opioid use disorder (OUD) currently (n = 19) and formerly (n = 16) receiving treatment from a multi-clinic outpatient MOUD program in Pennsylvania in July 2020 to January 2021. The Capability, Opportunity, Motivation, Behavior model provided a theoretical framework for analysis. Results: Based on interview themes, physical, rather than psychological, capability was more salient to MOUD engagement, and pertained to individual-level factors such as side effects, withdrawal, and the degree to which MOUD addressed participants’ need for pain management. Co-existing mental health conditions also challenged participants’ physical ability to attend appointments. The opportunity domain contained both physical and social aspects. Physical opportunity for MOUD engagement centered on community-level factors related to MOUD access (e.g., distance, transportation) and clinical-level factors including program policies. Themes related to social opportunity included interpersonal influences—such as therapeutic and social support—and stigma associated with OUD and MOUD. Motivation emerged as the dominant domain for patients. Reflective motivation factors included individual-level factors such as participants’ recognition of their addiction and “readiness” to quit illicit opioid use, attitudes toward MOUD, future treatment expectations, motivation to engage in MOUD, and perceived consequences of disengagement. Automatic motivation factors included the degree to which MOUD created a sense of normalcy for participants and the use of illicit drugs to numb emotions. Conclusions: Factors at the individual, interpersonal, clinical, community, and societal levels influenced patients’ capability, opportunity, and motivation to engage in MOUD. Understanding such factors can inform implementation strategies to improve retention.
| S-EPMC9912293 | biostudies-literature