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

2019 ◽  
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.

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.

scholarly journals The Policy Effect of the General Data Protection Regulation (GDPR) on the Digital Public Health Sector in the European Union: An Empirical Investigation

2019 ◽  
Vol 16 (6) ◽  
pp. 1070 ◽  
Author(s):  
Bocong Yuan ◽  
Jiannan Li
Keyword(s):  
European Union ◽  
Financial Performance ◽  
Data Protection ◽  
Digital Health ◽  
Rapid Development ◽  
Health Data ◽  
Personal Health ◽  
The European Union ◽  
General Data Protection Regulation ◽  
General Data

The rapid development of digital health poses a critical challenge to the personal health data protection of patients. The European Union General Data Protection Regulation (EU GDPR) works in this context; it was passed in April 2016 and came into force in May 2018 across the European Union. This study is the first attempt to test the effectiveness of this legal reform for personal health data protection. Using the difference-in-difference (DID) approach, this study empirically examines the policy influence of the GDPR on the financial performance of hospitals across the European Union. Results show that hospitals with the digital health service suffered from financial distress after the GDPR was published in 2016. This reveals that during the transition period (2016–2018), hospitals across the European Union indeed made costly adjustments to meet the requirements of personal health data protection introduced by this new regulation, and thus inevitably suffered a policy shock to their financial performance in the short term. The implementation of GDPR may have achieved preliminary success.

scholarly journals Insurance Customers’ Expectations for Sharing Health Data: Qualitative Survey Study

10.2196/16102 ◽  
2020 ◽  
Vol 8 (3) ◽  
pp. e16102
Author(s):  
Casandra Grundstrom ◽  
Olli Korhonen ◽  
Karin Väyrynen ◽  
Minna Isomursu
Keyword(s):  
Health Care ◽  
Health Services ◽  
Data Sharing ◽  
Social Exchange ◽  
Digital Health ◽  
Health Data ◽  
Survey Study ◽  
Insurance Companies ◽  
Care Needs ◽  
The Social

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.

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.

OP279 Data Protection In The European Union Post-General Data Protection Regulation (GDPR): A Barrier Or An Enabler Of Pharmaceutical Innovation?

2021 ◽  
Vol 37 (S1) ◽  
pp. 10-11
Author(s):  
Amanda Cole ◽  
Adrian Towse
Keyword(s):  
Data Protection ◽  
Cyber Security ◽  
Digital Health ◽  
Good Practice ◽  
Unmet Need ◽  
Scientific Research ◽  
Health Data ◽  
The European Union ◽  
General Data Protection Regulation ◽  
General Data

IntroductionThe expansion of health data offers exciting opportunities to support better and more efficient drug discovery, development and implementation. Data protection and governance provide the legal framework to balance safeguarding patients’ privacy with the benefits to society of medical research. Our aim is to highlight current legal barriers to the better use of health data and propose ways to address them.MethodsAnalysis of the relevant legislative texts was supplemented by interviews with external experts in data protection, health research, informatics and cyber security and a workshop with pharmaceutical industry members. We investigated the legal issues arising for six key activities along the pharmaceutical lifecycle, from identifying unmet need through to health technology assessment and pharmacovigilance.ResultsThe General Data Protection Regulation (GDPR) was introduced in May 2018 to Harmonise data protection across Europe. However, considerable ambiguity remains, particularly around the appropriate legal bases for data processing in the absence of consent: scientific research, public interest, or provision of health or social care. Other key themes included data subject rights, anonymization, compatibility of primary and secondary (re-)use of data, heterogeneity arising from divergent interpretation, the need for guidance on digital health, and the importance of trust.ConclusionsWe speculate which legal bases are most appropriate for the six pharmaceutical activities studied, but clear guidance and consensus is required. The GDPR was not designed to hamper scientific research, and the issues identified arose from uncertainties rather than barriers per se. Industry and academic researchers should therefore deal proactively with the prevailing uncertainties, share good practice, and engender trust by co-creating a code of conduct and outlining principles of responsible use. Engagement with patients will be critical in encouraging a shared understanding of the value to society of health data for research.

(Preprint)

2018 ◽  
Author(s):  
Ram Dixit ◽  
Sahiti Myneni
Keyword(s):  
Cancer Survivors ◽  
Mental Models ◽  
Health Systems ◽  
Information Needs ◽  
Health Data ◽  
Information Architecture ◽  
Personal Health ◽  
User Centered Design ◽  
Card Sort ◽  
Connected Health

BACKGROUND Connected Health technologies are a promising solution for chronic disease management. However, the scope of connected health systems makes it difficult to employ user-centered design in their development, and poorly designed systems can compound the challenges of information management in chronic care. The Digilego Framework addresses this problem with informatics methods that complement quantitative and qualitative methods in system design, development, and architecture. OBJECTIVE To determine the accuracy and validity of the Digilego information architecture of personal health data in meeting cancer survivors’ information needs. METHODS We conducted a card sort study with 9 cancer survivors (patients and caregivers) to analyze correspondence between the Digilego information architecture and cancer survivors’ mental models. We also analyzed participants’ card sort groups qualitatively to understand their conceptual relations. RESULTS We observed significant correlation between the Digilego information architecture and cancer survivors’ mental models of personal health data. Heuristic analysis of groups also indicated informative discordances and the need for patient-centric categories relating health tracking and social support in the information architecture. CONCLUSIONS Our pilot study shows that the Digilego Framework can capture cancer survivors’ information needs accurately; we also recognize the need for larger studies to conclusively validate Digilego information architectures. More broadly, our results highlight the importance of complementing traditional user-centered design methods and innovative informatics methods to create patient-centered connected health systems.

scholarly journals ‘We are very individual’: anticipated effects on stroke survivors of using their person-generated health data

2020 ◽  
Vol 27 (3) ◽  
pp. e100149
Author(s):  
Gerardo Luis Dimaguila ◽  
Frances Batchelor ◽  
Mark Merolli ◽  
Kathleen Gray
Keyword(s):  
Health Services ◽  
Information Technologies ◽  
Digital Health ◽  
Healthcare Providers ◽  
Health Behaviours ◽  
Stroke Care ◽  
Health Data ◽  
Care Process ◽  
Stroke Survivors ◽  
Patient Reported

BackgroundPerson-generated health data (PGHD) are produced by people when they use health information technologies. People who use PGHD may experience changes in their health and care process, such as engagement with their own healthcare, and their sense of social support and connectedness. Research into evaluating those reported effects has not kept up; thus, a method for measuring PGHD outcomes was previously designed and applied to the exemplar case of Kinect-based stroke rehabilitation systems. A key step of the method ensures that the patient’s voice is included. Allowing stroke survivors to participate in the development and evaluation of health services and treatment can inform healthcare providers on decisions about stroke care, and thereby improve health outcomes.ObjectiveThis paper presents the perspectives of stroke survivors and clinicians on the anticipated effects of stroke survivors’ use of PGHD from a poststroke simulated rehabilitation technology.MethodsThis study gathered the perspectives of stroke survivors and clinicians through three focus groups and three interviews, recruited for convenience. Participants were also asked questions intended to encourage them to comment on the initial items of the patient-reported outcome measure-PGHD. Deductive thematic analysis was performed.ResultsThis paper has further demonstrated that outcomes of using PGHD can be measured. For instance, stroke survivors described that using PGHD could result in positive, negative and nil effects on their health behaviours. Survivors and clinicians had varying perspectives in three of the six themes presented, and emphasise the importance of allowing stroke survivors to participate in the evaluation of digital health services.

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 COVID-19: Putting the General Data Protection Regulation to the Test (Preprint)

2020 ◽  
Author(s):  
Stuart McLennan ◽  
Leo Anthony Celi ◽  
Alena Buyx
Keyword(s):  
Health Care ◽  
Data Protection ◽  
Health Research ◽  
Health Care Organizations ◽  
Digital Health ◽  
Health Data ◽  
Individual Risk ◽  
Risk Minimization ◽  
General Data Protection Regulation ◽  
General Data

UNSTRUCTURED The coronavirus disease (COVID-19) pandemic is very much a global health issue and requires collaborative, international health research efforts to address it. A valuable source of information for researchers is the large amount of digital health data that are continuously collected by electronic health record systems at health care organizations. The European Union’s General Data Protection Regulation (GDPR) will be the key legal framework with regard to using and sharing European digital health data for research purposes. However, concerns persist that the GDPR has made many organizations very risk-averse in terms of data sharing, even if the regulation permits such sharing. Health care organizations focusing on individual risk minimization threaten to undermine COVID-19 research efforts. In our opinion, there is an ethical obligation to use the research exemption clause of the GDPR during the COVID-19 pandemic to support global collaborative health research efforts. Solidarity is a European value, and here is a chance to exemplify it by using the GDPR regulatory framework in a way that does not hinder but actually fosters solidarity during the COVID-19 pandemic.

scholarly journals Impact of COVID-19 on the access to hearing health care services for children with cochlear implants: a survey of parents

F1000Research ◽  
2020 ◽  
Vol 9 ◽  
pp. 690 ◽  
Author(s):  
Mohammed Ayas ◽  
Ahmad Mohd Haider Ali Al Amadi ◽  
Duaa Khaled ◽  
Ahmad Munzer Alwaa
Keyword(s):  
Health Services ◽  
Cochlear Implants ◽  
Health Care Services ◽  
Healthcare Access ◽  
Speech Sound ◽  
Healthcare Services ◽  
Online Questionnaire ◽  
Speech Processor ◽  
Hearing Health ◽  
The Impact

Background: The COVID-19 pandemic has affected the world in an unprecedented manner. It has aggravated psychological distress in parents of children with cochlear implants. Continuous use of a speech sound processor is critical for auditory stimulation in children with cochlear implants. However, movement restrictions imposed have affected access to hearing healthcare services. The current study explores the impact of the COVID-19 pandemic on hearing healthcare access for children with cochlear implants. Methods: An online questionnaire survey was conducted among parents of children with cochlear implants. Results: A total of 24 parents responded to the questionnaire. All the respondents reported that COVID-19 has a significant impact on access to hearing health services for their children. Speech processor breakdown and disconnection from the auditory mode of communication had a critical influence on behavioral changes in children. Conclusions: The current study highlights the hurdles faced by the parents in order to access hearing health services for their children. The use of innovative methods such as remote tele-audiology will be the way forward to tackle challenges faced by the parents.

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