scholarly journals Non-Hispanic White Mothers’ Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel

10.2196/14062 ◽  
2020 ◽  
Vol 12 (2) ◽  
pp. e14062
Author(s):  
Adam Bouras ◽  
Eduardo J Simoes ◽  
Suzanne Boren ◽  
Lanis Hicks ◽  
Iris Zachary ◽  
...  
Keyword(s):  
Health Information ◽  
Medical Record ◽  
Health Data ◽  
Personal Health ◽  
Patient Portal ◽  
Patient Portals ◽  
Web Based ◽  
Privacy Concerns ◽  
White Mothers ◽  
Hispanic White

Background Advances in information communication technology provide researchers with the opportunity to access and collect continuous and granular data from enrolled participants. However, recruiting study participants who are willing to disclose their health data has been challenging for researchers. These challenges can be related to socioeconomic status, the source of data, and privacy concerns about sharing health information, which affect data-sharing behaviors. Objective This study aimed to assess healthy non-Hispanic white mothers’ attitudes in five areas: motivation to share data, concern with data use, desire to keep health information anonymous, use of patient portal and willingness to share anonymous data with researchers. Methods This cross-sectional study was conducted on 622 healthy non-Hispanic white mothers raising healthy children. From a Web-based survey with 51 questions, we selected 15 questions for further analysis. These questions focused on attitudes and beliefs toward data sharing, internet use, interest in future research, and sociodemographic and health questions about mothers and their children. Data analysis was performed using multivariate logistic regressions to investigate the factors that influence mothers’ willingness to share their personal health data, their utilization of a patient portal, and their interests in keeping their health information anonymous. Results The results of the study showed that the majority of mothers surveyed wanted to keep their data anonymous (440/622, 70.7%) and use patient portals (394/622, 63.3%) and were willing to share their data from Web-based surveys (509/622, 81.8%) and from mobile phones (423/622, 68.0%). However, 36.0% (224/622) and 40.5% (252/622) of mothers were less willing to share their medical record data and their locations with researchers, respectively. We found that the utilization of patient portals, their attitude toward keeping data anonymous, and their willingness to share different data sources were dependent on the mothers’ health care provider status, their motivation, and their privacy concerns. Mothers’ concerns about the misuse of personal health information had a negative impact on their willingness to share sensitive data (ie, electronic medical record: adjusted odds ratio [aOR] 0.43, 95% CI 0.25-0.73; GPS: aOR 0.4, 95% CI 0.27-0.60). In contrast, mothers’ motivation to share their data had a positive impact on disclosing their data via Web-based surveys (aOR 5.94, 95% CI 3.15-11.2), apps and devices designed for health (aOR 5.3, 95% CI 2.32-12.1), and a patient portal (aOR 4.3, 95% CI 2.06-8.99). Conclusions The findings of this study suggest that mothers’ privacy concerns affect their decisions to share sensitive data. However, mothers’ access to the internet and the utilization of patient portals did not have a significant effect on their willingness to disclose their medical record data. Finally, researchers can use our findings to better address their study subjects concerns and gain their subjects trust to disclose data.

scholarly journals Correction: Non-Hispanic White Mothers’ Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel (Preprint)

2020 ◽  
Author(s):  
Adam Bouras ◽  
Eduardo J Simoes ◽  
Suzanne Boren ◽  
Lanis Hicks ◽  
Iris Zachary ◽  
...  
Keyword(s):  
Health Information ◽  
Medical Record ◽  
Health Data ◽  
Personal Health ◽  
Patient Portal ◽  
Patient Portals ◽  
Web Based ◽  
Privacy Concerns ◽  
White Mothers ◽  
Hispanic White

UNSTRUCTURED Advances in information communication technology provide researchers with the opportunity to access and collect continuous and granular data from enrolled participants. However, recruiting study participants who are willing to disclose their health data has been challenging for researchers. These challenges can be related to socioeconomic status, the source of data, and privacy concerns about sharing health information, which affect data-sharing behaviors. This study aimed to assess healthy non-Hispanic white mothers’ attitudes in five areas: motivation to share data, concern with data use, desire to keep health information anonymous, use of patient portal and willingness to share anonymous data with researchers. This cross-sectional study was conducted on 622 healthy non-Hispanic white mothers raising healthy children. From a Web-based survey with 51 questions, we selected 15 questions for further analysis. These questions focused on attitudes and beliefs toward data sharing, internet use, interest in future research, and sociodemographic and health questions about mothers and their children. Data analysis was performed using multivariate logistic regressions to investigate the factors that influence mothers’ willingness to share their personal health data, their utilization of a patient portal, and their interests in keeping their health information anonymous. The results of the study showed that the majority of mothers surveyed wanted to keep their data anonymous (440/622, 70.7%) and use patient portals (394/622, 63.3%) and were willing to share their data from Web-based surveys (509/622, 81.8%) and from mobile phones (423/622, 68.0%). However, 36.0% (224/622) and 40.5% (252/622) of mothers were less willing to share their medical record data and their locations with researchers, respectively. We found that the utilization of patient portals, their attitude toward keeping data anonymous, and their willingness to share different data sources were dependent on the mothers’ health care provider status, their motivation, and their privacy concerns. Mothers’ concerns about the misuse of personal health information had a negative impact on their willingness to share sensitive data (ie, electronic medical record: adjusted odds ratio [aOR] 0.43, 95% CI 0.25-0.73; GPS: aOR 0.4, 95% CI 0.27-0.60). In contrast, mothers’ motivation to share their data had a positive impact on disclosing their data via Web-based surveys (aOR 5.94, 95% CI 3.15-11.2), apps and devices designed for health (aOR 5.3, 95% CI 2.32-12.1), and a patient portal (aOR 4.3, 95% CI 2.06-8.99). The findings of this study suggest that mothers’ privacy concerns affect their decisions to share sensitive data. However, mothers’ access to the internet and the utilization of patient portals did not have a significant effect on their willingness to disclose their medical record data. Finally, researchers can use our findings to better address their study subjects concerns and gain their subjects trust to disclose data.

scholarly journals Non-Hispanic White Mothers’ Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel (Preprint)

2019 ◽  
Author(s):  
Adam Bouras ◽  
Eduardo Simoes ◽  
Suzanne Boren ◽  
Lanis Hicks ◽  
Iris Zachary ◽  
...  
Keyword(s):  
Health Information ◽  
Medical Record ◽  
Health Data ◽  
Personal Health ◽  
Patient Portal ◽  
Patient Portals ◽  
Web Based ◽  
Privacy Concerns ◽  
White Mothers ◽  
Hispanic White

BACKGROUND Advances in information communication technology provide researchers with the opportunity to access and collect continuous and granular data from enrolled participants. However, recruiting study participants who are willing to disclose their health data has been challenging for researchers. These challenges can be related to socioeconomic status, the source of data, and privacy concerns about sharing health information, which affect data-sharing behaviors. OBJECTIVE This study aimed to assess healthy non-Hispanic white mothers’ attitudes in five areas: motivation to share data, concern with data use, desire to keep health information anonymous, use of patient portal and willingness to share anonymous data with researchers. METHODS This cross-sectional study was conducted on 622 healthy non-Hispanic white mothers raising healthy children. From a Web-based survey with 51 questions, we selected 15 questions for further analysis. These questions focused on attitudes and beliefs toward data sharing, internet use, interest in future research, and sociodemographic and health questions about mothers and their children. Data analysis was performed using multivariate logistic regressions to investigate the factors that influence mothers’ willingness to share their personal health data, their utilization of a patient portal, and their interests in keeping their health information anonymous. RESULTS The results of the study showed that the majority of mothers surveyed wanted to keep their data anonymous (440/622, 70.7%) and use patient portals (394/622, 63.3%) and were willing to share their data from Web-based surveys (509/622, 81.8%) and from mobile phones (423/622, 68.0%). However, 36.0% (224/622) and 40.5% (252/622) of mothers were less willing to share their medical record data and their locations with researchers, respectively. We found that the utilization of patient portals, their attitude toward keeping data anonymous, and their willingness to share different data sources were dependent on the mothers’ health care provider status, their motivation, and their privacy concerns. Mothers’ concerns about the misuse of personal health information had a negative impact on their willingness to share sensitive data (ie, electronic medical record: adjusted odds ratio [aOR] 0.43, 95% CI 0.25-0.73; GPS: aOR 0.4, 95% CI 0.27-0.60). In contrast, mothers’ motivation to share their data had a positive impact on disclosing their data via Web-based surveys (aOR 5.94, 95% CI 3.15-11.2), apps and devices designed for health (aOR 5.3, 95% CI 2.32-12.1), and a patient portal (aOR 4.3, 95% CI 2.06-8.99). CONCLUSIONS The findings of this study suggest that mothers’ privacy concerns affect their decisions to share sensitive data. However, mothers’ access to the internet and the utilization of patient portals did not have a significant effect on their willingness to disclose their medical record data. Finally, researchers can use our findings to better address their study subjects concerns and gain their subjects trust to disclose data.

scholarly journals Pharmacy Customers’ Experiences of Use, Usability, and Satisfaction of a Nationwide Patient Portal: Survey Study

10.2196/25368 ◽  
2021 ◽  
Vol 23 (7) ◽  
pp. e25368
Author(s):  
Maria Sääskilahti ◽  
Riitta Ahonen ◽  
Johanna Timonen
Keyword(s):  
Health Care ◽  
Health Information ◽  
Data Privacy ◽  
Health Data ◽  
Survey Study ◽  
Patient Portal ◽  
Data Systems ◽  
Patient Portals ◽  
Privacy And Security ◽  
Chi Square

Background Patient portals have been introduced in several countries in the last few decades. Despite worldwide objectives of introducing patient portals, nationwide portals are rare, and studies about their use are limited. Finland is one of the forerunners in developing nationwide health data systems. A nationwide patient portal, My Kanta, for viewing electronic prescriptions and health data has been phased in, starting in 2010. Objective The aim of this study was to investigate what functions Finnish pharmacy customers use in My Kanta, their perceptions of the service’s usability, and how satisfied users are with My Kanta overall. Methods In spring 2019, questionnaires (N=2866) were distributed from 18 pharmacies of varying size across mainland Finland to adult pharmacy customers purchasing prescription medications for themselves or for their child under 18 years of age. Questions were asked about the use and usability of the patient portal by means of structured and Likert-scale questions. Statistical analyses included frequencies, means, medians, chi-square tests, Fisher exact tests, and Kruskal-Wallis tests. Results In total, 994 completed questionnaires of 2866 delivered questionnaires (34.68%) were returned. The most-used My Kanta functions were browsing prescription information (781/802, 97.4%), records of health care visits (772/802, 96.3%), and results of laboratory tests and x-ray examinations (722/804, 89.8%). Most users (558/793, 70.4%) had also requested a prescription renewal using the service. My Kanta was perceived as easy to log into (772/816, 94.6%) and clear to view (709/808, 87.7%). Most users considered the service useful for monitoring their health information (753/813, 92.6%) and felt that it provides a good overall picture of the medications prescribed to them (711/813, 87.5%). The majority of users found the information recorded about them easy to understand (684/800, 85.5%). Of the users, 16.7% (135/807) disagreed with the statement that the information they were looking for was easy to find. Approximately two-thirds (501/814, 61.5%) of users did not know whether it is easy to view in which pharmacies and health care units their prescription information has been viewed, and over one-third (306/805, 38.0%) did not know whether it is easy to view in which health care units their health information has been processed. Approximately one-fifth of participants (181/805, 22.5%) feared that unauthorized persons might view their information and that their electronically saved prescription and health information might disappear (180/810, 22.2%). In addition, 16.1% (129/799) expressed interest in receiving guidance on My Kanta use. The vast majority of users (719/804, 89.4%) were satisfied with the service overall. Conclusions Pharmacy customers were satisfied with the nationwide patient portal. It was mostly used for browsing e-prescriptions and medical records. Overall, the usability of the service was good. However, users need to be better informed about data privacy and security issues, and guidance on using the portal needs to be improved.

scholarly journals Correction: Non-Hispanic White Mothers’ Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel

10.2196/24183 ◽  
2020 ◽  
Vol 12 (4) ◽  
pp. e24183
Author(s):  
Adam Bouras ◽  
Eduardo J Simoes ◽  
Suzanne Boren ◽  
Lanis Hicks ◽  
Iris Zachary ◽  
...  
Keyword(s):  
Health Data ◽  
Personal Health ◽  
White Mothers ◽  
Survey Results ◽  
Hispanic White

scholarly journals Pharmacy Customers’ Experiences of Use, Usability, and Satisfaction of a Nationwide Patient Portal: Survey Study (Preprint)

2020 ◽  
Author(s):  
Maria Sääskilahti ◽  
Riitta Ahonen ◽  
Johanna Timonen
Keyword(s):  
Health Care ◽  
Health Information ◽  
Data Privacy ◽  
Health Data ◽  
Survey Study ◽  
Patient Portal ◽  
Data Systems ◽  
Patient Portals ◽  
Privacy And Security ◽  
Chi Square

BACKGROUND Patient portals have been introduced in several countries in the last few decades. Despite worldwide objectives of introducing patient portals, nationwide portals are rare, and studies about their use are limited. Finland is one of the forerunners in developing nationwide health data systems. A nationwide patient portal, My Kanta, for viewing electronic prescriptions and health data has been phased in, starting in 2010. OBJECTIVE The aim of this study was to investigate what functions Finnish pharmacy customers use in My Kanta, their perceptions of the service’s usability, and how satisfied users are with My Kanta overall. METHODS In spring 2019, questionnaires (N=2866) were distributed from 18 pharmacies of varying size across mainland Finland to adult pharmacy customers purchasing prescription medications for themselves or for their child under 18 years of age. Questions were asked about the use and usability of the patient portal by means of structured and Likert-scale questions. Statistical analyses included frequencies, means, medians, chi-square tests, Fisher exact tests, and Kruskal-Wallis tests. RESULTS In total, 994 completed questionnaires of 2866 delivered questionnaires (34.68%) were returned. The most-used My Kanta functions were browsing prescription information (781/802, 97.4%), records of health care visits (772/802, 96.3%), and results of laboratory tests and x-ray examinations (722/804, 89.8%). Most users (558/793, 70.4%) had also requested a prescription renewal using the service. My Kanta was perceived as easy to log into (772/816, 94.6%) and clear to view (709/808, 87.7%). Most users considered the service useful for monitoring their health information (753/813, 92.6%) and felt that it provides a good overall picture of the medications prescribed to them (711/813, 87.5%). The majority of users found the information recorded about them easy to understand (684/800, 85.5%). Of the users, 16.7% (135/807) disagreed with the statement that the information they were looking for was easy to find. Approximately two-thirds (501/814, 61.5%) of users did not know whether it is easy to view in which pharmacies and health care units their prescription information has been viewed, and over one-third (306/805, 38.0%) did not know whether it is easy to view in which health care units their health information has been processed. Approximately one-fifth of participants (181/805, 22.5%) feared that unauthorized persons might view their information and that their electronically saved prescription and health information might disappear (180/810, 22.2%). In addition, 16.1% (129/799) expressed interest in receiving guidance on My Kanta use. The vast majority of users (719/804, 89.4%) were satisfied with the service overall. CONCLUSIONS Pharmacy customers were satisfied with the nationwide patient portal. It was mostly used for browsing e-prescriptions and medical records. Overall, the usability of the service was good. However, users need to be better informed about data privacy and security issues, and guidance on using the portal needs to be improved.

Association between Patient Portal Usage and Perceived Patient-Centered Communication among Adults with Cancer: Cross-Sectional Survey Study (Preprint)

2021 ◽  
Author(s):  
Maryum Zaidi ◽  
Daniel J. Amante ◽  
Ekaterina Anderson ◽  
Mayuko Ito Fukunaga ◽  
Jamie Marie Faro ◽  
...  
Keyword(s):  
Logistic Regression ◽  
Health Information ◽  
Information Seeking ◽  
Self Efficacy ◽  
Multinomial Logistic Regression ◽  
Patient Portal ◽  
Health Information Seeking ◽  
Patient Portals ◽  
Patient Centered ◽  
Cancer Management

BACKGROUND Patient-centered communication (PCC) plays a vital role in effective cancer management and care. Patient portals are increasingly available to patients and hold potential as a valuable tool to facilitate PCC. However, whether the use of patient portals may improve perceived PCC or which mechanisms might mediate this relationship has not been studied. OBJECTIVE The primary goal of this study was to investigate the association between the frequency of access to patient portals and perceived PCC in patients with cancer. A secondary goal was to explore whether this association was mediated by patients' self-efficacy in health information seeking. METHODS We used data from the Health Information National Trend Survey 5 (HINTS 5) cycle 3 (2019) and cycle 4 (2020). The present analysis includes 1,222 individuals who self-reported having a current or past diagnosis of cancer. Perceived PCC was measured with a 7-item HINTS derived scale and classified as low, medium, or high. Patient portal usage was measured by a single item assessing the frequency of use. Self-efficacy about health information seeking was assessed with a one-item measure assessing confidence in obtaining health information. We used adjusted multinomial logistic regression models to estimate relative risk ratios (RRR) of the association between patients' patient portal usage and perceived PCC. Mediation by health information self-efficacy was investigated using the Baron and Kenny and Karlson, Holm, and Breen methods. RESULTS 54.5% of the sample reported that they did not access their patient portals in the past 12 months, 12.6 % accessed it 1-2 times, 24.8% accessed it 3-9 times, and 8.2% accessed it 10 or more times. Overall, the frequency of accessing the patient portal was marginally associated (P=0.06) with perceived PCC in an adjusted multinominal logistic regression model. Patients who accessed their patient portal 10 or more times in the previous 12 months were almost 4 times more likely (RRR=3.8; 95% CI 1.6–9.0) to report high perceived PCC. In mediation analysis, the association between patient portal use and perceived PCC was attenuated adjusting for health information seeking self-efficacy, but those with the most frequent patient portal use (ten or more times in the previous 12 months) were still almost 2.5 times more likely to report high perceived PCC (RRR=2.4; 95% CI 1.1–5.6) compared to those with no portal use. CONCLUSIONS PCC is an integral part of patient-centered care. Those who reported the greatest use of patient portals were more likely to report higher perceived PCC. These findings emphasize the importance of encouraging cancer patients and providers to use patient portals to increase patient-centeredness of care and suggest that interventions to promote the adoption and use of patient portals could incorporate strategies to improve health information self-efficacy.

Exploring Type-and-Identity-Based Proxy Re-Encryption Scheme to Securely Manage Personal Health Records

2010 ◽  
Vol 1 (2) ◽  
pp. 1-21
Author(s):  
Luan Ibraimi ◽  
Qiang Tang ◽  
Pieter Hartel ◽  
Willem Jonker
Keyword(s):  
Access Control ◽  
Health Data ◽  
Third Party ◽  
Personal Health ◽  
Encryption Scheme ◽  
Health Records ◽  
Web Based ◽  
The Third ◽  
Access Control Policies ◽  
Identity Based

Commercial Web-based Personal-Health Record (PHR) systems can help patients to share their personal health records (PHRs) anytime from anywhere. PHRs are very sensitive data and an inappropriate disclosure may cause serious problems to an individual. Therefore commercial Web-based PHR systems have to ensure that the patient health data is secured using state-of-the-art mechanisms. In current commercial PHR systems, even though patients have the power to define the access control policy on who can access their data, patients have to trust entirely the access-control manager of the commercial PHR system to properly enforce these policies. Therefore patients hesitate to upload their health data to these systems as the data is processed unencrypted on untrusted platforms. Recent proposals on enforcing access control policies exploit the use of encryption techniques to enforce access control policies. In such systems, information is stored in an encrypted form by the third party and there is no need for an access control manager. This implies that data remains confidential even if the database maintained by the third party is compromised. In this paper we propose a new encryption technique called a type-and-identity-based proxy re-encryption scheme which is suitable to be used in the healthcare setting. The proposed scheme allows users (patients) to securely store their PHRs on commercial Web-based PHRs, and securely share their PHRs with other users (doctors).

scholarly journals Viewpoint: Health literacy and patient portals

2015 ◽  
Vol 7 (2) ◽  
pp. 172 ◽  
Author(s):  
Yulong Gu ◽  
Martin Orr ◽  
Jim Warren
Keyword(s):  
Health Care ◽  
Health Literacy ◽  
Health Information ◽  
Health Care Providers ◽  
Easy Access ◽  
Patient Portal ◽  
Care Providers ◽  
Patient Portals ◽  
Health Consumer ◽  
Improve Patient

Health literacy has been described as the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. Improving health literacy may serve to promote concordance with therapy, engage patients in their own health care, and improve health outcomes. Patient portal technology aims at enabling patients and families to have easy access to key information in their own medical records and to communicate with their health care providers electronically. However, there is a gap in our understanding of how portals will improve patient outcome. The authors believe patient portal technology presents an opportunity to improve patient concordance with prescribed therapy, if adequate support is provided to equip patients (and family/carers) with the knowledge needed to utilise the health information available via the portals. Research is needed to understand what a health consumer will use patient portals for and how to support a user to realise the technology?s potential.

Privacy and Security: Are Your Health Information Systems up to Standard?

1996 ◽  
Vol 26 (4) ◽  
pp. 197-201 ◽  
Author(s):  
Tina Magennis ◽  
Jennifer Mitchell
Keyword(s):  
Health Care ◽  
Information Systems ◽  
Health Information ◽  
Health Information Systems ◽  
Health Data ◽  
Human Behaviour ◽  
Personal Health ◽  
Privacy And Security ◽  
Patient Health ◽  
Privacy And Confidentiality

As electronic patient health information systems become more fully developed and widespread, there are persistent concerns about the privacy and confidentiality of the personal health data being stored and disseminated. Standards Australia has released two Standards which provide useful guidelines for the organisational, technological and human behaviour solutions required to protect privacy and confidentiality in health care organisations. The major requirements of these Standards are outlined and the implications of the Standards for health information managers are discussed.

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