scholarly journals Participation in data generation and information sharing: are patients and carers willing to engage?

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
C De Freitas ◽  
S Silva ◽  
E Leão Teles ◽  
T Maia ◽  
M Amorim
Keyword(s):  
Information Sharing ◽  
Social Trust ◽  
Social Indicators ◽  
Health Data ◽  
Data Generation ◽  
Willingness To Participate ◽  
Cross Sectional ◽  
Non Profit ◽  
For Profit ◽  
Share Information

Abstract Background Health systems are moving towards a personalisation of care. Personalised care relies on data-intensive research, which depends on active participation by citizens in data generation and information sharing. Collecting and sharing one's data for research can deliver several benefits. However, it also comes at a cost in time and effort that may burden different population subsets to varying degrees. This study aimed to assess patients' and carers' willingness to generate and share health data, and its associated factors, to inform the design of inclusive engagement strategies. Methods A cross-sectional study was performed with 157 patients and 487 carers (participation rate=89.3%) followed at 2 rare diseases reference centres in Portugal (06/2019-01/2020). Participants were asked about willingness to collect their health data. Those who responded yes/maybe also reported, from 0 (not willing) to 4 (always willing), on willingness to share it for the following purposes: diagnosis/treatment, non-profit research and for-profit research related to their disease and to other diseases. Data were analysed using descriptive and inferential statistics. Results From 567 respondents, 42.7% are willing to collect their health data, 34.7% are unsure and 22.6% do not want to participate in data generation. More educated participants, with white-collar occupations, satisfied/very satisfied with their health and those with higher social trust levels are significantly more willing to engage in data collection (p < 0.05). Participants are less prone to share information for for-profit research on their disease (Median[P25-P75]: 3.0[2.0-4.0]) or others (Median[P25-P75]: 2.0[1.0-3.0]), in particular carers (p < 0.05). Conclusions Participants are more willing to share information for diagnosis/treatment and non-profit research. Efforts to engage people in data generation and sharing should be directed towards disadvantaged groups to reduce biases related to skewed populations. Key messages Willingness to participate in data generation and sharing is influenced by social indicators. Engagement by less advantaged groups should be promoted to avoid biases related to skewed populations.

Twitter Usage Using Common Reference to Tinnitus

2020 ◽  
Vol 29 (2) ◽  
pp. 206-217
Author(s):  
Jianyuan Ni ◽  
Monica L. Bellon-Harn ◽  
Jiang Zhang ◽  
Yueqing Li ◽  
Vinaya Manchaiah
Keyword(s):  
Nonprofit Organizations ◽  
Temporal Trends ◽  
Temporal Analysis ◽  
Cross Sectional ◽  
For Profit ◽  
Common Reference ◽  
Personal Experiences ◽  
Twitter Users ◽  
Sectional Analysis ◽  
Share Information

Objective The objective of the study was to examine specific patterns of Twitter usage using common reference to tinnitus. Method The study used cross-sectional analysis of data generated from Twitter data. Twitter content, language, reach, users, accounts, temporal trends, and social networks were examined. Results Around 70,000 tweets were identified and analyzed from May to October 2018. Of the 100 most active Twitter accounts, organizations owned 52%, individuals owned 44%, and 4% of the accounts were unknown. Commercial/for-profit and nonprofit organizations were the most common organization account owners (i.e., 26% and 16%, respectively). Seven unique tweets were identified with a reach of over 400 Twitter users. The greatest reach exceeded 2,000 users. Temporal analysis identified retweet outliers (> 200 retweets per hour) that corresponded to a widely publicized event involving the response of a Twitter user to another user's joke. Content analysis indicated that Twitter is a platform that primarily functions to advocate, share personal experiences, or share information about management of tinnitus rather than to provide social support and build relationships. Conclusions Twitter accounts owned by organizations outnumbered individual accounts, and commercial/for-profit user accounts were the most frequently active organization account type. Analyses of social media use can be helpful in discovering issues of interest to the tinnitus community as well as determining which users and organizations are dominating social network conversations.

Association of Ownership and System Affiliation with the Financial Performance of Rehabilitation Hospitals

1997 ◽  
Vol 10 (1-2) ◽  
pp. 13-23 ◽  
Author(s):  
M. J. McCue ◽  
J. M. Thompson
Keyword(s):  
Financial Performance ◽  
Regression Models ◽  
Ancillary Services ◽  
Cross Sectional ◽  
Non Profit ◽  
For Profit ◽  
Cross Sectional Design ◽  
The Cost ◽  
Rehabilitation Hospitals ◽  
Inpatient Basis

This study used a cross-sectional design in which regression models were used to test the association of ownership and system affiliation of private rehabilitation hospitals with profit, revenue and expense measures. The study also examined the association of ownership and system affiliation with other choice variables. The study found that new for-profit rehabilitation hospitals had higher revenues and expenses than older non-profit rehabilitation hospitals. In addition, new for-profit hospitals charged more for their ancillary services and treated more of their patients on an inpatient basis. Study findings show higher revenues and expenses per adjusted discharge for new for-profit facilities. Given the cost-based system of reimbursement for Medicare, there appears to be a strong incentive for new for-profits to maximize costs.

scholarly journals Availability and prices of medicines for non-communicable diseases at health facilities and retail drug outlets in Kenya: a cross-sectional survey in eight counties

BMJ Open ◽  
2020 ◽  
Vol 10 (5) ◽  
pp. e035132 ◽  
Author(s):  
Paul G Ashigbie ◽  
Peter C Rockers ◽  
Richard O Laing ◽  
Howard J Cabral ◽  
Monica A Onyango ◽  
...  
Keyword(s):  
Treatment Guidelines ◽  
Communicable Diseases ◽  
Health Facilities ◽  
Essential Medicines ◽  
Price Ratio ◽  
Cross Sectional ◽  
Non Communicable Diseases ◽  
Non Profit ◽  
For Profit ◽  
The Mean

ObjectivesThe objective of this study was to determine the availability and prices of medicines for non-communicable diseases (NCDs) in health facilities and private for-profit drug outlets in Kenya.DesignCross-sectional study.MethodsAll public and non-profit health facilities in eight counties (Embu, Kakamega, Kwale, Makueni, Narok, Nyeri, Samburu and West Pokot) that purchased medicines from the Mission for Essential Drugs and Supplies, a major wholesaler, were surveyed in September 2016. For each health facility, one nearby private for-profit drug outlet was also surveyed. Data on availability and price were analysed for 24 NCD and 8 acute medicine formulations. Availability was analysed separately for medicines in the national Essential Medicines List (EML) and those in the Standard Treatment Guidelines (STGs). Median price ratios were estimated using the International Medical Products Price Guide as a reference.Results59 public and 78 non-profit facilities and 135 drug outlets were surveyed. Availability of NCD medicines was highest in private for-profit drug outlets (61.7% and 29.3% for medicines on the EML and STGs, respectively). Availability of STG medicines increased with increasing level of care of facilities: 16.1% at dispensaries to 31.7% at secondary referral facilities. The mean proportion of availability for NCD medicines listed in the STGs (0.25) was significantly lower than for acute medicines (0.61), p<0.0001. The proportion of public facilities giving medicines for free (0.47) was significantly higher than the proportion of private non-profit facilities giving medicines for free (0.09) (p<0.0001). The mean price ratio of NCD medicines was significantly higher than for acute medicines in non-profit facilities (4.1 vs 2.0, respectively; p=0.0076), and in private for-profit drug outlets (3.5 vs 1.7; p=0.0013).ConclusionPatients with NCDs in Kenya appear to have limited access to medicines. Increasing access should be a focus of efforts to achieve universal health coverage.

scholarly journals Compress the curve: a cross-sectional study of variations in COVID-19 infections across California nursing homes

BMJ Open ◽  
2021 ◽  
Vol 11 (1) ◽  
pp. e042804
Author(s):  
Ram Gopal ◽  
Xu Han ◽  
Niam Yaraghi
Keyword(s):  
Nursing Homes ◽  
Cross Sectional Study ◽  
The State ◽  
Cross Sectional ◽  
Term Care ◽  
Policy Makers ◽  
Non Profit ◽  
For Profit ◽  
The Us

ObjectiveNursing homes’ residents and staff constitute the largest proportion of the fatalities associated with COVID-19 epidemic. Although there is a significant variation in COVID-19 outbreaks among the US nursing homes, we still do not know why such outbreaks are larger and more likely in some nursing homes than others. This research aims to understand why some nursing homes are more susceptible to larger COVID-19 outbreaks.DesignObservational study of all nursing homes in the state of California until 1 May 2020.SettingThe state of California.Participants713 long-term care facilities in the state of California that participate in public reporting of COVID-19 infections as of 1 May 2020 and their infections data could be matched with data on ratings and governance features of nursing homes provided by Centers for Medicare & Medicaid Services (CMS).Main outcome measureThe number of reported COVID-19 infections among staff and residents.ResultsStudy sample included 713 nursing homes. The size of outbreaks among residents in for-profit nursing homes is 12.7 times larger than their non-profit counterparts (log count=2.54; 95% CI, 1.97 to 3.11; p<0.001). Higher ratings in CMS-reported health inspections are associated with lower number of infections among both staff (log count=−0.19; 95% CI, −0.37 to −0.01; p=0.05) and residents (log count=−0.20; 95% CI, −0.27 to −0.14; p<0.001). Nursing homes with higher discrepancy between their CMS-reported and self-reported ratings have higher number of infections among their staff (log count=0.41; 95% CI, 0.31 to 0.51; p<0.001) and residents (log count=0.13; 95% CI, 0.08 to 0.18; p<0.001).ConclusionsThe size of COVID-19 outbreaks in nursing homes is associated with their ratings and governance features. To prepare for the possible next waves of COVID-19 epidemic, policy makers should use these insights to identify the nursing homes who are more likely to experience large outbreaks.

scholarly journals Public preferences for involvement in the governance of health data

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
C De Freitas ◽  
M Amorim ◽  
E Leão Teles ◽  
T Maia ◽  
H Machado ◽  
...  
Keyword(s):  
Policy Development ◽  
Public Involvement ◽  
Participation Rate ◽  
Evidence Base ◽  
Health Data ◽  
Study Data ◽  
University Hospital ◽  
Willingness To Participate ◽  
Data Governance ◽  
Cross Sectional

Abstract Background Public involvement in the governance of epidemiological and public health studies can foster needs-driven research, enhance participants' recruitment, reduce attrition and improve the quality of and ethics in research and surveillance. However, it can also reinforce health inequalities if it fails to ensure public representation across socioeconomic gradients. This study aimed to assess patients' and carers' preferences for involvement in collective health data governance, and its associated factors, to strengthen the evidence base for policy development. Methods Between June 2019 and January 2020, 644 people (157 patients and 487 carers; participation rate=89.3%) followed at two reference centres for rare diseases in a university hospital from Northern Portugal were enrolled in an observational cross-sectional study. Data about willingness to participate in data governance was collected through four intersecting options: periodic or sporadic meetings, by either giving opinions (consultation) or participating in decision-making (deliberation). Data were analysed using descriptive and inferential statistics. Results From a total of 629 respondents, 39% are willing to get involved through at least one of the four participatory options and 16% do not want to participate. Patients and carers do not differ in their preferences for involvement. Sex and education are associated with willingness to participate, after adjustment for participant type (patient/carer), occupation and trust in national and international institutions (OR:1.60; 95%CI 1.05-2.45 for men vs. women and OR:1.65; 95%CI 1.07-2.56 for &gt;12 vs. ≤12 educational years). Participants' preferred option for participation is consultative sporadic meetings (29.5%). Conclusions Anticipating which social groups are likely to become under-represented in participatory exercises is crucial to inform policy aimed at promoting inclusive involvement in health data governance. Key messages Men and higher educated participants are more willing to participate. Forecasting potential for subgroup under-representation is crucial to develop policy for inclusive participatory data governance.

scholarly journals Italian public’s views on sharing genetic information and medical information: findings from the ‘Your DNA, Your Say’ study

2021 ◽  
Vol 6 ◽  
pp. 180
Author(s):  
Virginia Romano ◽  
Richard Milne ◽  
Deborah Mascalzoni
Keyword(s):  
Medical Information ◽  
Public Attitudes ◽  
Genomic Medicine ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Non Profit ◽  
For Profit ◽  
Italian Regions ◽  
The Government ◽  
Italian Context

Background: The collection and sharing of genomic and health data underpins global efforts to develop genomic medicine services. ‘Your DNA, Your Say’ is a cross-sectional survey with the goal of gathering lay public attitudes toward the access and sharing of deoxyribonucleic acid (DNA) information and medical information. It suggests significant international variation in the willingness to share information, and in trust in the actors associated with the collection and use of this information. This paper explores these questions in the Italian context. Methods: The Italian Your DNA, Your Say campaign led to the collection of 1229 valid questionnaires. The sample was analysed using standard descriptive statistics. We described the sample in terms of gender, age ranges and self-reported religiosity, and split the sample amongst the five typically studied Italian macro-areas to explore regional variation. We analysed the relationship between these factors and trust and willingness to share medical and DNA information.  Results: The majority of the sample, across all socio-demographics, were willing to share DNA and health information with all entities considered except for-profit researchers. Respondents tended not to trust institutions beyond their own doctor. There was no difference between Italian regions. Conclusions: Despite the generally positive attitude towards sharing, we suggest that the lack of trust in non-profit researchers and the government needs to be better understood to inform public communication projects around genomics in the future and to enhance awareness of DNA and medical information in Italy.

Public, Private and Voluntary Residential Mental Health Care: Is There a Cost Difference?

1998 ◽  
Vol 3 (3) ◽  
pp. 141-148 ◽  
Author(s):  
Martin Knapp ◽  
Daniel Chisholm ◽  
Jack Astin ◽  
Paul Lelliott ◽  
Bernard Audini
Keyword(s):  
Mental Health ◽  
Health Care ◽  
Local Government ◽  
Mental Health Care ◽  
Residential Care ◽  
Consistent Difference ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Non Profit ◽  
For Profit

Objectives: To determine how public (NHS or local government), private (for-profit) and voluntary (non-profit) providers of residential mental health care compare. Do they support different clienteles? And do their services cost different amounts? Methods: Based on a cross-sectional survey of residential care facilities and their residents in eight English and Welsh localities, the characteristics and costs of care in the different sectors (NHS, local government, private, voluntary) were compared. Variations in cost were examined in relation to residents' characteristics using multiple regression analyses, which also allowed standardisation of results before making inter-sectoral comparisons. Results: Private and voluntary providers of residential care support different clienteles from the public sector. The patterns of inter-sectoral cost differences vary between London and non-London localities. In London, voluntary sector facilities may be more cost-efficient than the other sectors, but local government/private sector comparisons show no consistent difference. Outside London, the results suggest clear cost advantages for the private and voluntary sectors over the local government sector. Conclusions: Private and voluntary providers may have some economic advantages over their public counterparts. However, outcomes for residents were not studied, leaving unanswered the question of comparative cost-effectiveness.

An information sharing theory perspective on willingness to share information in supply chains

2017 ◽  
Vol 28 (2) ◽  
pp. 417-443 ◽  
Author(s):  
Nadia Zaheer ◽  
Peter Trkman
Keyword(s):  
Life Satisfaction ◽  
Supply Chains ◽  
Information Sharing ◽  
Structural Equation ◽  
Model Fit ◽  
Social Psychological ◽  
Cross Sectional ◽  
Content Type ◽  
The Impact ◽  
Share Information

Purpose The quality of information sharing is of the utmost importance for supply chains (SCs). The purpose of this paper is to improve understanding of the human attitude: willingness to share, its antecedents and its role in improving information sharing quality. Design/methodology/approach Based on information sharing theory, a theoretical model and research hypotheses are developed. Data from 387 respondents were collected to test the hypotheses and model fit using structural equation modelling and mediation analysis. The impact of social-psychological factors and information technology (IT) infrastructure capability on willingness to share information and, consequently, its effect on information sharing quality were analysed using IBM SPSS Statistics, PROCESS and AMOS. Findings The statistical analysis showed a good model fit. Trust is the most important antecedent for willingness to share, while the impacts of commitment and reciprocity are also significant. Interestingly, power is not a significant antecedent of willingness. Life satisfaction is a significant precursor to willingness to share information, whereas surprisingly overall job satisfaction does not play a significant role. Research limitations/implications Cross-sectional data were used and the scope was limited to SCs. Practical implications Managers should be aware that trust, commitment and reciprocity with their SC partners influence the willingness to share information with varying effects. Access to proper IT capabilities increases willingness as does the life satisfaction. SC individuals who are happy with life are more willing. Interestingly, high power might get the sharer to share information albeit unwillingly. Originality/value The model provides a social-psychological understanding of the antecedents of human willingness to share information, which is crucial to sharing quality information. Overall, the social-psychological and IT factors model based on information sharing theory is statistically valid for the SC context.

Considering Others’ Mental States Causally Increases Feelings of Social Bonding and Information Sharing

2019 ◽  
Author(s):  
Elisa Baek ◽  
Diana Tamir ◽  
Emily B. Falk
Keyword(s):  
Social Behavior ◽  
Information Sharing ◽  
Mental States ◽  
Social Bonding ◽  
Health News ◽  
Brain Behavior ◽  
The Relationship ◽  
Share Information ◽  
Shed Light ◽  
Mentalizing System

Information sharing is a ubiquitous social behavior. What causes people to share? Mentalizing, or considering the mental states of other people, has been theorized to play a central role in information sharing, with higher activity in the brain’s mentalizing system associated with increased likelihood to share information. In line with this theory, we present novel evidence that mentalizing causally increases information sharing. In three pre-registered studies (n = 400, 840, and 3500 participants), participants who were instructed to consider the mental states of potential information receivers indicated higher likelihood to share health news compared to a control condition where they were asked to reflect on the content of the article. Certain kinds of mentalizing were particularly effective; in particular, considering receivers’ emotional and positive mental states, led to the greatest increase in likelihood to share. The relationship between mentalizing and sharing was mediated by feelings of closeness with potential receivers. Mentalizing increased feelings of connectedness to potential receivers, and in turn, increased likelihood of information sharing. Considering receivers’ emotional, positive, and inward-focused mental states was most effective at driving participants to feel closer with potential receivers and increase sharing. Data provide evidence for a causal relationship between mentalizing and information sharing and provide insight about the mechanism linking mentalizing and sharing. Taken together, these results advance theories of information sharing and shed light on previously observed brain-behavior relationships.

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