scholarly journals Blockchain-based Personal Health Data Sharing System Using Cloud Storage

2018 ◽  
Author(s):  
Xiaochen Zheng ◽  
Raghava Rao Mukkamala ◽  
Ravi Vatrapu ◽  
Joaqun Ordieres-Mere
Keyword(s):  
Data Sharing ◽  
Cloud Storage ◽  
Health Data ◽  
Personal Health

scholarly journals Factors Related to Personal Health Data Sharing: Data Usefulness, Sensitivity and Anonymity

2021 ◽  
Author(s):  
Samar Helou ◽  
Victoria Abou-Khalil ◽  
Elie El Helou ◽  
Ken Kiyono
Keyword(s):  
Public Health ◽  
Data Sharing ◽  
Health Research ◽  
Online Survey ◽  
Public Health Research ◽  
Health Data ◽  
Perceived Usefulness ◽  
Personal Health ◽  
Sociodemographic Characteristics ◽  
Region Of Residence

Using an online survey, we examined the relationships between the perceived usefulness, sensitivity, and anonymity of personal health data and people’s willingness to share it with researchers. An analysis of 112 responses showed that people’s willingness and perceptions are related to the type of the data, their trust in the data’s anonymity, and their personal sociodemographic characteristics. In general, we found that people do not completely trust that their identities remain anonymous when sharing data anonymously with researchers. We also found that they are more willing to share personal health data with researchers if they perceive it as useful for public health research, not sensitive, and if they trust that their identity will remain anonymous after sharing it. We also found that people’s age, gender, occupation, and region of residence may be related to their perceptions regarding the sharing of personal health data.

scholarly journals Consumers’ Intentions to Adopt Blockchain-Based Personal Health Records and Data Sharing: Focus Group Study (Preprint)

2020 ◽  
Author(s):  
Chang Lu ◽  
Danielle Batista ◽  
Hoda Hamouda ◽  
Victoria Lemieux
Keyword(s):  
Health Care ◽  
Focus Group ◽  
Data Sharing ◽  
Health Data ◽  
Personal Health Records ◽  
Third Party ◽  
Personal Health ◽  
Health Records ◽  
The Third ◽  
The Third Party

BACKGROUND Although researchers are giving increased attention to blockchain-based personal health records (PHRs) and data sharing, the majority of research focuses on technical design. Very little is known about health care consumers’ intentions to adopt the applications. OBJECTIVE This study aims to explore the intentions and concerns of health care consumers regarding the adoption of blockchain-based personal health records and data sharing. METHODS Three focus groups were conducted, in which 26 participants were shown a prototype of a user interface for a self-sovereign blockchain-based PHR system (ie, a system in which the individual owns, has custody of, and controls access to their personal health information) to be used for privacy and secure health data sharing. A microinterlocutor analysis of focus group transcriptions was performed to show a descriptive overview of participant responses. NVivo 12.0 was used to code the categories of the responses. RESULTS Participants did not exhibit a substantial increase in their willingness to become owners of health data and share the data with third parties after the blockchain solution was introduced. Participants were concerned about the risks of losing private keys, the resulting difficulty in accessing care, and the irrevocability of data access on blockchain. They did, however, favor a blockchain-based PHR that incorporates a private key recovery system and offers a health wallet hosted by government or other positively perceived organizations. They were more inclined to share data via blockchain if the third party used the data for collective good and offered participants nonmonetary forms of compensation and if the access could be revoked from the third party. CONCLUSIONS Health care consumers were not strongly inclined to adopt blockchain-based PHRs and health data sharing. However, their intentions may increase when the concerns and recommendations demonstrated in this study are considered in application design.

scholarly journals Consumers’ Intentions to Adopt Blockchain-Based Personal Health Records and Data Sharing: Focus Group Study

10.2196/21995 ◽  
2020 ◽  
Vol 4 (11) ◽  
pp. e21995
Author(s):  
Chang Lu ◽  
Danielle Batista ◽  
Hoda Hamouda ◽  
Victoria Lemieux
Keyword(s):  
Health Care ◽  
Focus Group ◽  
Data Sharing ◽  
Health Data ◽  
Personal Health Records ◽  
Third Party ◽  
Personal Health ◽  
Health Records ◽  
The Third ◽  
The Third Party

Background Although researchers are giving increased attention to blockchain-based personal health records (PHRs) and data sharing, the majority of research focuses on technical design. Very little is known about health care consumers’ intentions to adopt the applications. Objective This study aims to explore the intentions and concerns of health care consumers regarding the adoption of blockchain-based personal health records and data sharing. Methods Three focus groups were conducted, in which 26 participants were shown a prototype of a user interface for a self-sovereign blockchain-based PHR system (ie, a system in which the individual owns, has custody of, and controls access to their personal health information) to be used for privacy and secure health data sharing. A microinterlocutor analysis of focus group transcriptions was performed to show a descriptive overview of participant responses. NVivo 12.0 was used to code the categories of the responses. Results Participants did not exhibit a substantial increase in their willingness to become owners of health data and share the data with third parties after the blockchain solution was introduced. Participants were concerned about the risks of losing private keys, the resulting difficulty in accessing care, and the irrevocability of data access on blockchain. They did, however, favor a blockchain-based PHR that incorporates a private key recovery system and offers a health wallet hosted by government or other positively perceived organizations. They were more inclined to share data via blockchain if the third party used the data for collective good and offered participants nonmonetary forms of compensation and if the access could be revoked from the third party. Conclusions Health care consumers were not strongly inclined to adopt blockchain-based PHRs and health data sharing. However, their intentions may increase when the concerns and recommendations demonstrated in this study are considered in application design.

Provably Secure Data Sharing Approach for Personal Health Records in Cloud Storage Using Session Password, Data Access Key, and Circular Interpolation

2021 ◽  
Vol 17 (4) ◽  
pp. 76-98
Author(s):  
Naveen John ◽  
Shatheesh Sam
Keyword(s):  
Health Information ◽  
Data Sharing ◽  
Cloud Storage ◽  
High Efficiency ◽  
Personal Health Record ◽  
Data Access ◽  
Personal Health Information ◽  
Personal Health ◽  
Secure Data ◽  
Circular Interpolation

Personal health record (PHR) system has become the most important platform to exchange health information, in which the patients can share and manage personal health information more effectively in cloud storage. However, the cloud server is unreliable, and the secure data of users may be disclosed. Therefore, a secure data sharing mechanism is developed in this research using the proposed session password, data access key, and circular interpolation (SKC)-based data-sharing approach for the secure sharing of PHR in the cloud. The proposed SKC-based data sharing approach provides high efficiency and high-security guarantee. It effectively satisfies various security properties, such as tamper resistance, openness, and decentralization. The proposed SKC-based data sharing approach is the reliable mechanism created for the doctors to share the PHR and to access the patient historical data while meeting the privacy preservation.

scholarly journals Ethical Considerations When Creating Evidence from Real World Digital Health Data

2020 ◽  
Author(s):  
C. Nebeker ◽  
Victoria Leavy ◽  
Eva Roitmann ◽  
Steven Steinhubl
Keyword(s):  
Data Sharing ◽  
Real World ◽  
Digital Health ◽  
Health Data ◽  
Personal Health ◽  
Real World Evidence ◽  
Self Study ◽  
Health Related Research ◽  
Health Related ◽  
English Speaking

AbstractBackgroundPersonal health data (PHD) are collected using digital self-tracking technologies and present opportunities to increase self-knowledge and, also biometric surveillance. PHD become “big” data and are used in health-related research studies. We surveyed consumers regarding expectations regarding consent and sharing of PHD for biomedical research.MethodsData sharing preferences were assessed via an 11-item survey. The survey link was emailed to 89539 English-speaking Withings product users. Responses were accepted for 5 weeks.Descriptive statistics were calculated using Excel and qualitative data were analyzed to provide additional context.ResultsNearly 1640 people or 5.7% of invitees responded representing 62 countries with 80% identifying as Caucasian, 75% male with 78% being college educated. The majority were agreeable to having their data shared with researchers to advance knowledge and improve health care.Participants responding to open ended items (N=247) appeared unaware that the company had access to their personal health data.ConclusionsWhile the majority of respondents were in favor of data sharing, individuals expressed concerns about the ability to de-identify data and associated risks of re-identification as well as an interest in having some control over the use of “their” data. Given consumer misconception about data ownership, access and use, efforts to increase transparency when interacting with individual digital health data must be prioritized. Moreover, the basic ethical principle of “respect for persons” demonstrated via the informed consent process will be critical in advancing the adoption of digital technologies that create real-world evidence and advance opportunities for N-of-1 self-study.

scholarly journals Assessment of Nursing Students’ Attitudes Towards Recording and Protecting Patients’ Personal Health Data: A Descriptive Study

2021 ◽  
Vol 28 (3) ◽  
pp. E202133
Author(s):  
Sebahat Atalıkoğlu Başkan ◽  
Papatya Karakurt ◽  
Necla Kasımoğlu
Keyword(s):  
Nursing Students ◽  
Data Sharing ◽  
Sample Selection ◽  
Personal Data ◽  
Attitude Scale ◽  
Health Data ◽  
Personal Health ◽  
Academic Level ◽  
Significant Difference ◽  
Students Attitudes

Introduction. Since health information is considered as sensitive personal data and requires more careful protection, healthcare professionals need to be careful about this issue. The objective of this research was to determine nursing students’ attitudes towards recording and protecting patients’ personal health data. Materials and Methods. The population of this descriptive research consisted of 450 students who studied at the Department of Nursing, Faculty of Health Sciences, Erzincan Binali Yildirim University. Sample selection was not used, and the research was completed with 374 students who were continuing education and who were accepted to participate in the research. Descriptive Information template and Attitude Scale for Recording and Protecting Personal Health Data for nursing students were used as data-collection instruments. The numbers, percentage, mean, standard deviation, non-parametric tests (the Mann-Whitney U test and the Kruskal-Wallis test) were used in data analysis. Results. Among our research participants, 68.4% of the students were females; 28.1% of the students were freshmen; 69% of the students were graduates of Anatolian high schools. Approximately 72.5% and 52.9% of the participants stated that they were aware of the concept of “personal data” and “personal health data” , respectively. The mean score of nursing students on the Attitude Scale for Recording and Protecting Personal Health Data was 3.97±0.71. The means scores obtained from subscales were as follows: 3.91±0.72 for Personal Health Data Information, 4.15±0.80 for Legal Information, 4.05±0.94 for Legal Data Sharing, 3.90±0.80 for Personal Health Data Sharing, and 3.77±0.33 for Recording of Personal Health Data, respectively. A statistically significant difference was found between the total scale and subscale scores of the students regarding their academic level. Conclusions. Students were found to have a positive attitude towards recording and protecting personal data. Increasing the responsibilities and raising awareness of the students for the protection of personal health data during their study is suggested to be important.

scholarly journals Findings from 2017 on Consumer Health Informatics and Education: Health Data Access and Sharing

2018 ◽  
Vol 27 (01) ◽  
pp. 163-169 ◽  
Author(s):  
Pascal Staccini ◽  
Annie Lau ◽  
Keyword(s):  
Health Information ◽  
Data Sharing ◽  
Health Informatics ◽  
Data Access ◽  
Health Data ◽  
Demographic Characteristics ◽  
Personal Health Information ◽  
Consumer Health Informatics ◽  
Personal Health ◽  
Consumer Health

Objective: To summarize the state of the art during the year 2017 in consumer health informatics and education, with a special emphasis on sharing health data and accessing personal health information (PHI) from patients' and consumers' perspective. Methods: We conducted a systematic search of articles published in PubMed using a predefined set of queries which identified 228 potential articles for review. The section editors then screened these articles according to topic relevance and selected 15 candidate best papers for full review and scoring by a panel of international experts. Based on the scores and the reviews, four papers received the highest score and were selected in a consensus meeting as the best papers on health data access and sharing from consumers' and patients' perspective. Results: These four papers were categorised into the following topics: 1) data sharing for research and governance in privacy protection; 2) use of personal health information and individual privacy concerns; and 3) consumers' views and demographic characteristics regarding health data sharing and the use of digital health portals. Overall, it was surprising to see only a small number of papers reporting original research in this area. Conclusions: Patients understand the need for sharing information to facilitate best care and to enrich biomedical knowledge. When confronted with the reality of accessing information systems for their own information, patients are concerned about usability as well as privacy. Overall, there is a need for more emphasis on: 1) considering privacy as a feature defined by design; 2) using specific consent approaches and data sharing mechanisms for recruiting clinical trial participants; 3) taking into account socio-demographic characteristics when promoting consumer access to personal health information; and 4) defining indicators of high-quality care to incorporate healthcare professionals' level of caution when accessing patients' medical information and fostering patient trust in data exchange. Ultimately, privacy mechanisms should be part of the design process and not only be implemented when security has been breached and violated.

scholarly journals Connected Health User Willingness to Share Personal Health Data: Questionnaire Study

10.2196/14537 ◽  
2019 ◽  
Vol 21 (11) ◽  
pp. e14537 ◽  
Author(s):  
Maria Karampela ◽  
Sofia Ouhbi ◽  
Minna Isomursu
Keyword(s):  
Health Services ◽  
Data Sharing ◽  
Health Care Services ◽  
Digital Health ◽  
Scientific Research ◽  
Health Data ◽  
Personal Health ◽  
Online Questionnaire ◽  
General Data Protection Regulation ◽  
Connected Health

Background Connected health has created opportunities for leveraging health data to deliver preventive and personalized health care services. The increasing number of personal devices and advances in measurement technologies contribute to an exponential growth in digital health data. The practices for sharing data across the health ecosystem are evolving as there are more opportunities for using such data to deliver responsive health services. Objective The objective of this study was to explore user attitudes toward sharing personal health data (PHD). The study was executed within the first year after the implementation of the new General Data Protection Regulation (GDPR) legal framework. Methods The authors analyzed the results of an online questionnaire survey to explore the willingness of 8004 people using connected health services across four European countries to share their PHD and the conditions under which they would be willing to do so. Results Our findings indicate that the majority of users are willing to share their personal PHD for scientific research (1811/8004, 22.63%). Age, education level, and occupation of the participants, in addition to the level of digitalization in their country were found to be associated with data sharing attitudes. Conclusions Positive attitudes toward data sharing for scientific research can be perceived as an indication of trust established between users and academia. Nevertheless, the interpretation of data sharing attitudes is a complex process, related to and influenced by various factors.

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