Dataset Information

Putting the Focus Back on the Patient: How Privacy Concerns Affect Personal Health Information Sharing Intentions.

ABSTRACT: BACKGROUND:Health care providers are driven by greater participation and systemic cost savings irrespective of benefits to individual patients derived from sharing Personal Health Information (PHI). Protecting PHI is a critical issue in the sharing of health care information systems; yet, there is very little literature examining the topic of sharing PHI electronically. A good overview of the regulatory, privacy, and societal barriers to sharing PHI can be found in the 2009 Health Information Technology for Economic and Clinical Health Act. OBJECTIVE:This study investigated the factors that influence individuals' intentions to share their PHI electronically with health care providers, creating an understanding of how we can represent a patient's interests more accurately in sharing settings, instead of treating patients like predetermined subjects. Unlike privacy concern and trust, patient activation is a stable trait that is not subject to change in the short term and, thus, is a useful factor in predicting sharing behavior. We apply the extended privacy model in the health information sharing context and adapt this model to include patient activation and issue involvement to predict individuals' intentions. METHODS:This was a survey-based study with 1600+ participants using the Health Information National Trends Survey (HINTS) data to validate a model through various statistical techniques. The research method included an assessment of both the measurement and structural models with post hoc analysis. RESULTS:We find that privacy concern has the most influence on individuals' intentions to share. Patient activation, issue involvement, and patient-physician relationship are significant predictors of sharing intention. We contribute to theory by introducing patient activation and issue involvement as proxies for personal interest factors in the health care context. CONCLUSIONS:Overall, this study found that although patients are open to sharing their PHI, they still have concerns over the privacy of their PHI during the sharing process. It is paramount to address this factor to increase information flow and identify how patients can assure that their privacy is protected. The outcome of this study is a set of recommendations for motivating the sharing of PHI. The goal of this research is to increase the health profile of the patients by integrating the testing and diagnoses of various doctors across health care providers and, thus, bring patients closer to the physicians.

SUBMITTER: Abdelhamid M

PROVIDER: S-EPMC5617905 | biostudies-literature | 2017 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Putting the Focus Back on the Patient: How Privacy Concerns Affect Personal Health Information Sharing Intentions.

Abdelhamid Mohamed M Gaia Joana J Sanders G Lawrence GL

Journal of medical Internet research 20170913 9

<h4>Background</h4>Health care providers are driven by greater participation and systemic cost savings irrespective of benefits to individual patients derived from sharing Personal Health Information (PHI). Protecting PHI is a critical issue in the sharing of health care information systems; yet, there is very little literature examining the topic of sharing PHI electronically. A good overview of the regulatory, privacy, and societal barriers to sharing PHI can be found in the 2009 Health Inform ...[more]

PMID: 28903895

Similar Datasets

Project description:ImportanceDigital health information has many potential health applications, but privacy is a growing concern among consumers and policy makers. Consent alone is increasingly seen as inadequate to safeguard privacy.ObjectiveTo determine whether different privacy protections are associated with consumers' willingness to share their digital health information for research, marketing, or clinical uses.Design, setting, and participantsThis 2020 national survey with an embedded conjoint experiment recruited US adults from a nationally representative sample with oversampling of Black and Hispanic individuals. Willingness to share digital information across 192 different scenarios reflecting the product of 4 possible privacy protections, 3 uses of information, 2 users of information, and 2 sources of digital information was evaluated. Each participant was randomly assigned 9 scenarios. The survey was administrated between July 10 and July 31, 2020, in Spanish and English. Analysis for this study was conducted between May 2021 and July 2022.Main outcomes and measuresParticipants rated each conjoint profile on a 5-point Likert scale measuring their willingness to share their personal digital information (with 5 indicating the most willingness to share). Results are reported as adjusted mean differences.ResultsOf the 6284 potential participants, 3539 (56%) responded to the conjoint scenarios. A total of 1858 participants (53%) were female, 758 (21%) identified as Black, 833 (24%) identified as Hispanic, 1149 (33%) had an annual income less than $50 000, and 1274 (36%) were 60 years or older. Participants were more willing to share health information with the presence of each individual privacy protection, including consent (difference, 0.32; 95% CI, 0.29-0.35; P < .001), followed by data deletion (difference, 0.16; 95% CI, 0.13-0.18; P < .001), oversight (difference, 0.13; 95% CI, 0.10-0.15; P < .001), and transparency of data collected (difference, 0.08; 95% CI, 0.05-0.10; P < .001). The relative importance (importance weight on a 0%-100% scale) was greatest for the purpose of use (29.9%) but when considered collectively, the 4 privacy protections together were the most important (51.5%) factor in the conjoint experiment. When the 4 privacy protections were considered separately, consent was the most important (23.9%).Conclusions and relevanceIn this survey study of a nationally representative sample of US adults, consumers' willingness to share personal digital health information for health purposes was associated with the presence of specific privacy protections beyond consent alone. Additional protections, including data transparency, oversight, and data deletion may strengthen consumer confidence in sharing their personal digital health information.

Project description:BackgroundAlthough 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.ObjectiveThis study aims to explore the intentions and concerns of health care consumers regarding the adoption of blockchain-based personal health records and data sharing.MethodsThree 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.ResultsParticipants 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.ConclusionsHealth 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.

Project description:ObjectivesAccess to personal health records in an ICU by persons involved in the patient's care (referred to broadly as "family members" below) has the potential to increase engagement and reduce the negative psychologic sequelae of such hospitalizations. Currently, little is known about patient preferences for information sharing with a designated family member in the ICU. We sought to understand the information-sharing preferences of former ICU patients and their family members and to identify predictors of information-sharing preferences.DesignWe performed an internet survey that was developed by a broad, multidisciplinary team of stakeholders. Formal pilot testing of the survey was conducted prior to internet survey administration to study subjects.SettingInternet survey.SubjectsSubjects included English-speaking adults who had an ICU experience or a family member with ICU experience between 2013 and 2016. We used panel sampling to ensure an ethnically representative sample of the U.S. population.InterventionsNone.Measurements and main resultsOne thousand five hundred twenty surveys were submitted, and 1,470 were included in analysis. The majority of respondents (93.6%) stated that they would want to share present and past medical history, either all or that related to their ICU stay, with a designated family member of their choosing. The majority (79%) would also want their designated family member to be able to access that information from a home computer. Although most respondents preferred to share all types of information, they indicated varying levels of willingness to share specific types of more sensitive information. Information-sharing preferences did not differ by age, sex, ethnicity, or type of prior experience in the ICU (i.e., patient or family member).ConclusionsIn the context of an ICU admission, sharing personal health information with a person of the patient's choosing appears desirable for most patients and family members. Policies and implementation of regulations should take this into consideration.

Project description:BackgroundAs electronic health records (EHRs) become ubiquitous in the health care industry, privacy breaches are increasing and being made public. These breaches may make consumers wary of the technology, undermining its potential to improve care coordination and research.ObjectiveGiven the developing concerns around privacy of personal health information stored in digital format, it is important for providers to understand how views on privacy and security may be associated with patient disclosure of health information. This study aimed to understand how privacy concerns may be shifting patient behavior.MethodsUsing a pooled cross-section of data from the 2011 and 2014 cycles of the Health Information and National Trends Survey (HINTS), we tested whether privacy and security concerns, as well as quality perceptions, are associated with the likelihood of withholding personal health information from a provider. A fully interacted multivariate model was used to compare associations between the 2 years, and interaction terms were used to evaluate trends in the factors that are associated with withholding behavior.ResultsNo difference was found regarding the effect of privacy and security concerns on withholding behavior between 2011 and 2014. Similarly, whereas perceived high quality of care was found to reduce the likelihood of withholding information from a provider in both 2011 (odds ratio [OR] 0.73, 95% confidence interval [CI] 0.56-0.94) and 2014 (OR 0.61, 95% CI 0.48-0.76), no difference was observed between years.ConclusionsThese findings suggest that consumers' beliefs about EHR privacy and security, the relationship between technology use and quality, and intentions to share information with their health care provider have not changed. These findings are counter to the ongoing discussions about the implications of security failures in other domains. Our results suggest that providers could ameliorate privacy and security by focusing on the care quality benefits EHRs provide.

Project description:ObjectiveDigital nudging has been mooted as a tool to alter user privacy behavior. However, empirical studies on digital nudging have yielded divergent results: while some studies found nudging to be highly effective, other studies found no such effects. Furthermore, previous studies employed a wide range of digital nudges, making it difficult to discern the effectiveness of digital nudging. To address these issues, we performed a systematic review of empirical studies on digital nudging and information disclosure as a specific privacy behavior.MethodThe search was conducted in five digital libraries and databases: Scopus, Google Scholar, ACM Digital Library, Web of Science, and Science Direct for peer-reviewed papers published in English after 2006, examining the effects of various nudging strategies on disclosure of personal information online.ResultsThe review unveiled 78 papers that employed four categories of nudge interventions: presentation, information, defaults, and incentives, either individually or in combination. A meta-analysis on a subset of papers with available data (n = 54) revealed a significant small-to-medium sized effect of the nudge interventions on disclosure (Hedges' g = 0.32). There was significant variation in the effectiveness of nudging (I2 = 89%), which was partially accounted for by interventions to increase disclosure being more effective than interventions to reduce disclosure. No evidence was found for differences in the effectiveness of nudging with presentation, information, defaults, and incentives interventions.ConclusionIdentifying ways to nudge users into making more informed and desirable privacy decisions is of significant practical and policy value. There is a growing interest in digital privacy nudges for disclosure of personal information, with most empirical papers focusing on nudging with presentation. Further research is needed to elucidate the relative effectiveness of different intervention strategies and how nudges can confound one another.

Project description:BackgroundMobile health (mHealth) provides a new opportunity for disease prediction and patient health self-management. However, privacy problems in mHealth have drawn significant attention to patients' online health information disclosure and to the possibility that privacy concerns may hinder mHealth development.ObjectivePrivacy calculus theory (PCT) has been widely used to understand personal information disclosure behaviors with the basic assumption of a rational and linear decision-making process. However, cognitive behavior processes are complex and mutual. In an attempt to gain a fuller understanding of information disclosure behavior, we further optimize a PCT-based information disclosure model by identifying the mutual relationship between costs (privacy concerns) and benefits. Social support, which has been proven to be a distinct and significant disclosure benefit of mHealth, was chosen as the representative benefit of information disclosure.MethodsWe examine a structural equation model that incorporates privacy concerns, health information disclosure intention in mHealth, and social support from mHealth, all at the individual level.ResultsA validated questionnaire was completed by 253 randomly selected participants. The result indicated that perceived health information sensitivity positively enhances patients' privacy concern (beta path coefficient 0.505, P<.001), and higher privacy concern levels will decrease their health information disclosure intention (beta path coefficient -0.338, P<.001). Various individual characteristics influence perceived health information sensitivity in different ways. One dimension of social support, informational support, negatively moderates the effect of the relationship between perceived health information sensitivity and privacy concerns (beta path coefficient -0.171, P=.092) and the effect of the relationship between privacy concerns and health information disclosure intention (beta path coefficient -0.105, P=.092). However, another dimension, emotional support, has no direct moderation effect on the relationship between privacy concerns and health information disclosure intention.ConclusionsThe results indicate that social support can be regarded as a disutility reducer. That is, on the one hand, it reduces patients' privacy concerns; on the other hand, it also reduces the negative impact of privacy concerns on information disclosure intention. Moreover, the moderation effect of social support is partially supported. Informational support, one dimension of social support, is significant (beta path coefficient -0.171, P=.092), while the other dimension, emotional support, is not significant (beta path coefficient -0.137, P=.146), in mHealth. Furthermore, the results are different among patients with different individual characteristics. This study also provides specific theoretical and practical implications to enhance the development of mHealth.

Dataset Information

Putting the Focus Back on the Patient: How Privacy Concerns Affect Personal Health Information Sharing Intentions.

Publications

Putting the Focus Back on the Patient: How Privacy Concerns Affect Personal Health Information Sharing Intentions.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets