Use Of Personal Health Information Research Articles

Reported Interest in Notification Regarding Use of Health Information and Biospecimens

This study describes reported interest in notification regarding use of personal health information and biospecimens for research and preference-associated factors among a sample of the US population in 2019.

Patient consent preferences on sharing personal health information during the COVID-19 pandemic: “the more informed we are, the more likely we are to help”

BackgroundRapid ethical access to personal health information (PHI) to support research is extremely important during pandemics, yet little is known regarding patient preferences for consent during such crises. This follow-up study sought to ascertain whether there were differences in consent preferences between pre-pandemic times compared to during Wave 1 of the COVID-19 global pandemic, and to better understand the reasons behind these preferences.MethodsA total of 183 patients in the pandemic cohort completed the survey via email, and responses were compared to the distinct pre-pandemic cohort (n = 222); all were patients of a large Canadian cancer center. The survey covered (a) broad versus study-specific consent; (b) opt-in versus opt-out contact approach; (c) levels of comfort sharing with different recipients; (d) perceptions of commercialization; and (e) options to track use of information and be notified of results. Four focus groups (n = 12) were subsequently conducted to elucidate reasons motivating dominant preferences.ResultsPatients in the pandemic cohort were significantly more comfortable with sharing all information and biological samples (90% vs. 79%, p = 0.009), sharing information with the health care institution (97% vs. 83%, p < 0.001), sharing information with researchers at other hospitals (85% vs. 70%, p < 0.001), sharing PHI provincially (69% vs. 53%, p < 0.002), nationally (65% vs. 53%, p = 0.022) and internationally (48% vs. 39%, p = 0.024) compared to the pre-pandemic cohort. Discomfort with sharing information with commercial companies remained unchanged between the two cohorts (50% vs. 51% uncomfortable, p = 0.58). Significantly more pandemic cohort patients expressed a wish to track use of PHI (75% vs. 61%, p = 0.007), and to be notified of results (83% vs. 70%, p = 0.012). Thematic analysis uncovered that transparency was strongly desired on outside PHI use, particularly when commercialization was involved.ConclusionsIn pandemic times, patients were more comfortable sharing information with all parties, except with commercial entities, where levels of discomfort (~ 50%) remained unchanged. Focus groups identified that the ability to track and receive results of studies using one’s PHI is an important way to reduce discomfort and increase trust. These findings meaningfully inform wider discussions on the use of personal health information for research during global crises.

The use of personal health information outside the circle of care: consent preferences of patients from an academic health care institution

BackgroundImmense volumes of personal health information (PHI) are required to realize the anticipated benefits of artificial intelligence in clinical medicine. To maintain public trust in medical research, consent policies must evolve to reflect contemporary patient preferences.MethodsPatients were invited to complete a 27-item survey focusing on: (a) broad versus specific consent; (b) opt-in versus opt-out approaches; (c) comfort level sharing with different recipients; (d) attitudes towards commercialization; and (e) options to track PHI use and study results.Results222 participants were included in the analysis; 83% were comfortable sharing PHI with researchers at their own hospital, although younger patients (≤ 49 years) were more uncomfortable than older patients (50 + years; 13% versus 2% uncomfortable, p < 0.05). While 56% of patients preferred broad consent, 38% preferred specific consent; 6% preferred not sharing at all. The majority of patients (63%) preferred to be asked for permission before entry into a contact pool. Again, this trend was more pronounced for younger patients (≤ 49 years: 76%). Approximately half of patients were uncomfortable sharing PHI with commercial enterprises (51% uncomfortable, 27% comfortable, 22% neutral). Most patients preferred to track PHI usage (61%), with the highest proportion once again reported by the youngest patients (≤ 49 years: 71%). A majority of patients also wished to be notified regarding study results (70%).ConclusionsWhile most patients were willing to share their PHI with researchers within their own institution, many preferred a transparent and reciprocal consent process. These data also suggest a generational shift, wherein younger patients preferred more specific consent options. Modernizing consent policies to reflect increased autonomy is crucial in fostering sustained public engagement with medical research.

Is waiver of consent for the use of health information for research acceptable to emergency department patients?

Some emergency medicine research, especially retrospective studies using medical records review, rely on waiver of consent for use of personal health information (PHI) contained in clinical records. This is a secondary use of PHI and waiver of consent raises ethical, legal and practical issues. Granting of a waiver of consent is often (but not always) approved by a human research ethics committee and requires separate but inter-related consideration of the legal and ethical issues. In part, this involves a balancing of the public interest versus the risk to privacy and an evaluation of whether subjects would, mostly likely, have agreed to the use of their PHI had they been asked. To date, there are no robust data about whether use of PHI without consent for research would be acceptable to people who attend Australasian EDs for care.

Privacy Is Dead - Solutions for Privacy-Enabled Collections and Use of Personal Health Information in Digital Era.

Today's digital information systems and applications collect every day a huge amount of personal health information (PHI) from sensor and surveillance systems, and every time we use personal computers or mobile phones. Collected data is processed in clouds, platforms and ecosystems by digital algorithms and machine learning. Pervasive technology, insufficient and ineffective privacy legislation, strong ICT industry and low political will to protect data subject's privacy have together made it almost impossible for a user to know what PHI is collected, how it is used and to whom it is disclosed. Service providers' and organizations' privacy policy documents are cumbersome and they do not guarantee that PHI is not misused. Instead, service users are expected to blindly trust in privacy promises made. In spite of that, majority of individuals are concerned of their privacy, and governments' assurance that they meet the responsibility to protect citizens in real life privacy is actually dead. Because PHI is probably the most sensitive data we have, and the authors claim it cannot be a commodity or public good, they have studied novel privacy approaches to find a way out from the current unsatisfactory situation. Based on findings got, the authors have developed a promising solution for privacy-enabled use of PHI. It is a combination of the concept of information fiduciary duty, Privacy as Trust approach, and privacy by smart contract. This approach shifts the onus of privacy protection onto data collectors and service providers. A specific information fiduciary duty law is needed to harmonize privacy requirements and force the acceptance of proposed solutions. Furthermore, the authors have studied strengths and weaknesses of existing or emerging solutions.

Ethical frameworks for quality improvement activities: an analysis of international practice.

To examine international approaches to the ethical oversight and regulation of quality improvement and clinical audit in healthcare systems. We searched grey literature including websites of national research and ethics regulatory bodies and health departments of selected countries. National guidance documents were included from six countries: Ireland, England, Australia, New Zealand, the United States of America and Canada. Data were extracted from 19 documents using an a priori framework developed from the published literature. We organized data under five themes: ethical frameworks; guidance on ethical review; consent, vulnerable groups and personal health data. Quality improvement activity tended to be outside the scope of the ethics frameworks in most countries. Only New Zealand had integrated national ethics standards for both research and quality improvement. Across countries, there is consensus that this activity should not be automatically exempted from ethical review but requires proportionate review or organizational oversight for minimal risk projects. In the majority of countries, there is a lack of guidance on participant consent, use of personal health information and inclusion of vulnerable groups in routine quality improvement. Where countries fail to provide specific ethics frameworks for quality improvement, guidance is dispersed across several organizations which may lack legal certainty. Our review demonstrates a need for appropriate oversight and responsive infrastructure for quality improvement underpinned by ethical frameworks that build equivalence with research oversight. It outlines aspects of good practice, especially The New Zealand framework that integrates research and quality improvement ethics.

Driving health behavior: The roles of personal health information use and attitudes towards health in women’s cancer screenings

Objective: Our interest in patient attitudes and beliefs and how they contribute to health and health seeking behaviors is based on growing interest in fostering more patient-centered care. This is particularly relevant for cancer screening in women, where the procedures may be viewed as deeply personal and emotionally invasive. There is convincing evidence that health attitudes and beliefs are strong associates of cancer screening among women. The goal of this paper is to examine if accessibility and use of personal health information (PHI) is a positive predictive of cancer related health detection behaviors among United States women. This study is relevant and timely considering the growing focus on prevention in patient-centered care delivery.Methods: Using data from the 2017 Health Information National Trends Survey (HINTS), this paper employed multivariable path analysis to investigate whether PHI use is related to engaged women’s health detection behaviors, and if this relationship is mediated by self-perceived health status and patient attitudes regarding confidence in their self-care abilities.Results: This study found that PHI use worked directly on health detection behaviors for intermediate levels of health information only. Our findings also suggest that patient attitudes may only act as a mediator at low levels of information use and when both confidence in self-care abilities and self-assessed health status are considered simultaneously.Conclusions: As prevention continues to be a key focus of health care, efforts promoting enhanced population health are critically important. With greater expansion of patient portals, health systems and providers are expecting access to greater PHI will promote increased engagement by patients in their self-health. The results of our research suggest that PHI is positive for patients up until a point and that health care delivery professionals may wish to assess the amount and type of information made readily available to the patients they serve related to breast and cervical cancer screenings.

The future state of patient engagement? Personal health information use, attitudes towards health, and health behavior.

The past decade has given rise to interest in the effects of health care information on personal well-being. However, investigations to-date typically centered on mass communication programs in health rather than on individuals’ psychosocial characteristics, agency, and behaviors associated with their engagement with this information. Considering this gap, we examined whether the availability of personal health information is associated with health prevention behaviors in the United States. Using multivariable path analysis and data from the 2017 Health Information National Trends Survey, we investigate whether the use of personal health information is associated with positive, preventative health behaviors (healthy eating, tobacco smoking, and exercise), and if this relationship is mediated by patient confidence in their ability to care for themselves and by their self-perceived health status. Findings indicate that the use of health information, at low levels, is important for improving patient attitudes regarding their health status and confidence in caring for themselves. Perceived health-status and patient confidence, in turn, are associated with preventative health behaviors. Notably, too much information does not necessarily result in positive health behaviors among patients. Organizations may wish to critically assess how much information they make readily available to the populations they serve.

Personal health information in research: Perceived risk, trustworthiness and opinions from patients attending a tertiary healthcare facility.

Personal health information is a valuable resource to the advancement of research. In order to achieve a comprehensive reform of data infrastructure in Australia, both public engagement and building social trust is vital. In light of this, we conducted a study to explore the opinions, perceived risks and trustworthiness regarding the use of personal health information for research, in a sample of the public attending a tertiary healthcare facility. The Consumer Opinions of Research Data Sharing (CORDS) study was a questionnaire-based design with 249 participants who were attending a public tertiary healthcare facility located on the Gold Coast, Australia. The questionnaire was designed to explore opinions and evaluate trust and perceived risk in research that uses personal health information. Concept analysis was used to identify key dimensions of perceived risk. Overall participants were supportive of research, highly likely to participate and mostly willing to share their personal health information. However, where the perceived risk of data misuse was high and trust in others was low, participants expressed hesitation to share particular types of information. Performance, physical and privacy risks were identified as key dimensions of perceived risk. This study highlights that while participant views on the use of personal health information in research is mostly positive, where there is perceived risk in an environment of low trust, support for research decreases. The three key findings of this research are that willingness to share data is contingent upon: (i) data type; (ii) risk perception; and (iii) trust in who is accessing the data. Understanding which factors play a key role in a person's decision to share their personal health information for research is vital to securing a social license.

Security of PHR in Cloud Computing by Using Several Attribute Based Encryption Techniques

Personal health record is an emerging trend in the health field for the exchange and use of personal health information. This record is now a day’s stored in the third party storage areas like in the cloud providers. To reduce the storage space needed and for the cost reduction, the cloud service applied. There are lots of security issues related with the storage of sensitive personal health information in the clouds. The privacy and confidentiality of personal health information have challenges when cloud storage and applications used. Here the advanced encryption methods like attribute based encryption and its variations are used. Secure sharing of personal health record is assured in this system.

Access and Disclosure of Personal Health Information: A Challenging Privacy Landscape in 2016-2018.

Summary Objectives: To assess the current health data access and disclosure environment for potential privacy-protecting mechanisms that enable legitimate use of personal health information while preserving the rights of individuals. To identify the gaps and challenges between increasing requests and expanding uses of such information and the regulations, technologies, and management practices that permit appropriate access and disclosure while guarding against harmful misuse of such information. Methods: A scoping literature review focused on (1) regulations affecting access and disclosure of personal health information, (2) the uses of health information that challenge access and disclosure boundaries, and (3) privacy management practices that may help mitigate gaps in protecting patient privacy. Results: Countries and jurisdictions are developing laws, regulations, and public policies to balance the privacy rights of individuals and the unprecedented opportunities to advance health and health care through expanded uses of health data. Regulations and guidance are evolving, but they are outpaced by the increasing demand for and the challenges of managing access and disclosure. Mechanisms such as consent and authorization may not always be adequate. Mechanisms that advance principled stewardship are more important than ever. Conclusions: Access and disclosure management are important dimensions of privacy management practices. This is a volatile period in which diverging public policies may reveal how best to balance access and disclosure of personal health information by individuals and by institutional custodians of the information. Approaches to access and disclosure management, including the roles of individuals, should be a focus for research and study in the years ahead.

The Roles of Personal Health Information Use and Patient Attitudes in Driving Health Behavior

In a momentous cultural shift, the health care industry has seen an increased emphasis in transparency across all domains of health care, transitioning from programs and payments that emphasize volume to those that emphasize value. One such facet of transparency is the idea that greater access to personal health information by patients will facilitate greater involvement in health care decision-making on the part of the patient, thereby promoting higher levels of engagement and better quality outcomes. Using multivariable path analysis and data from the 2014 Health Information National Trends Survey (HINTS), this study investigates whether the use of personal health information is associated with positive, engaged preventative health behaviors, and if this relationship is mediated by patient confidence in their ability to care for themselves and self-perceived health status. Our findings indicate that the use of health information, at low levels, is important for improving patient attitudes regarding their health status and care confidence. Perceived health-status and patient confidence, in turn, are associated with patient behaviors, but their effects vary by behavior.

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

Summary 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.

Ethical Issues in Secondary Use of Personal Health Information

The accessibility of personal health information (PHI) will increase on the Internet of the future to provide timely support for both primary and secondary uses. Although PHI for secondary uses is generally anonymized, its widespread distribution on the Internet raises ethical concerns. The PHI should remain an individual's most closely guarded asset [1], [2]. While other forms of personal data represent what the person does, owns, or knows, PHI represents what the person is. PHI describes the biological attributes of the human being, often containing longitudinal records of wellness, illness, test results, and treatments [3]. These characteristics amplify the seriousness and un-reversible consequences that uniquely differentiate breaches or disclosures of PHI data from other forms of data breach. In conducting risk assessment analysis, the result of even a single PHI data breach can be catastrophic. As it is impossible to place a price on our health, it is similarly impossible to place a price on PHI. Risk assessments calculations [4] involving annual loss expectancy, single loss expectancy, or annualized rate of occurrence are irrelevant when PHI has been breached. In light of this, the questions of: (1) granting the patient the right to consent, that is, opt-in or out, of the de-identification and subsequent secondary use of their PHI; and (2) finding synthetic alternatives to de-identified PHI for certain type of secondary uses to protect patient privacy, urgently need to be addressed.

Data protection in medical research: A comparative analysis

Healthcare research represents arguably the most important use of personal health information. Leveraging health-related data to this end involves the collection of information, processing of information and transaction or transfer of information. The use of such information is governed by data protection laws. This paper highlights the importance of medical/health information and its relationship with healthcare research as well as issues of confidentiality and privacy of information. The study includes a comparative analysis of the data protection legislations in the UK, USA and India. The issue of maintenance and integrity of the information is considered by means of a study of different legislations.

Patient Views on the Use of Personal Health Information and Biological Samples for Biobank Research

Patient Views on the Use of Personal Health Information and Biological Samples for Biobank Research

Answering questions posed by health system stakeholders using linked administrative health data at the Institute for Clinical Evaluative Sciences (ICES)

ABSTRACTObjectivesThere is a growing need to broaden access to administrative health data in order to support decision making and planning by health system stakeholders. An initiative funded by the Ontario Ministry of Health and Long-Term Care, the Applied Health Research Question (AHRQ) portfolio leverages the linked administrative health data holdings and the scientific and clinical expertise at ICES to answer questions generated by stakeholders that will have a direct impact on health care policy, planning or practice.&#x0D; ApproachEligible requesters include government ministries, health care providers and planners. Requests detail the purpose of the research question, the related scientific literature, and the planned use and intended impact of the research findings. An internal review team meets monthly to adjudicate; requests demonstrably needing research findings rapidly are adjudicated on an ad hoc basis. Eligible requests are those that aim to inform evidence-based decision making, do not advocate for a particular answer and are feasible in terms of data availability. All projects are reviewed by the internal privacy office to ensure that use of the administrative health data is in accordance with both data sharing agreements and legislation governing use of personal health information. At no cost to the requesting organization, ICES scientists and research staff formulate the analysis plan, conduct the analysis and prepare the research product (data tables, a slide deck and/or a written report); and, may opt to publish noteworthy findings. All research products must be cleared for risk of re-identification prior to being shared externally.&#x0D; ResultsRequests have steadily increased from 43 submissions in fiscal year 2012/13, to 59 in 2014/15 and 74 to date in 2015/16. In fiscal year 2014/15, provincial government and government agencies were the most frequent requesters (39%), followed by hospitals and other health care providers (19%), disease advocacy groups (12%) and professional associations (10%). Requests include assessment of health care utilization; health system performance and evaluation; and chronic disease prevalence and treatment. Time to complete reports varies from 5 days to 24 months, depending on project complexity and requirements. Requesters report that AHRQ research findings have influenced decision-making, policy development and health care practice; and have inspired future research.&#x0D; ConclusionThis initiative demonstrates the value and feasibility of using the linked administrative health data to answer questions to meet the unique needs of health planners and policymakers, and presents an opportunity for collaboration beyond the academic research community.

Understanding views on everyday use of personal health information: Insights from community dwelling older adults

ABSTRACTBackground: Older adults apply various strategies to pursue healthy aging, but we know little about their views and use of personal health information to accomplish those ends. Methods: As a first step in formulating the role of personal health information management (PHIM) in healthy aging, we explored the perspectives of older adults on health and health information used in their everyday lives through four focus groups with 25 community-dwelling adults aged 60 and over. Results: We found that the concept of wellness–the holistic and multidimensional nature of health and wellbeing–plays prominently in how older adults think about health and health information. Participants expressed wellness from a position of personal strength, rather than health-related deficits, by focusing on wellness activities for staying healthy through: (1) personal health practices, (2) social network support, and (3) residential community engagement. Conclusion: Although these themes involve personal health information, existing PHIM systems that focus on disease management are generally not designed to support wellness activities. Substantial opportunity exists to fill this wellness support gap with innovative health information technology designed for older adults. Findings carry implications for the design of PHIM tools that support healthy aging and methods for engaging older adults as co-producers of this critical support.

Recommendations for Social Media Use in Hospitals and Health Care Facilities

Recommendations for Social Media Use in Hospitals and Health Care Facilities

The importance of purpose: moving beyond consent in the societal use of personal health information.

Adoption of electronic health record systems has increased the availability of patient-level electronic health information. To examine public support for secondary uses of electronic health information under different consent arrangements. National experimental survey to examine perceptions of uses of electronic health information according to patient consent (obtained vs. not obtained), use (research vs. marketing), and framing of the findings (abstract description without results vs. specific results). Nationally representative survey. 3064 African American, Hispanic, and non-Hispanic white persons (response rate, 65%). Appropriateness of health information use described in vignettes on a scale of 1 (not at all appropriate) to 10 (very appropriate). Mean ratings ranged from a low of 3.81 for a marketing use when consent was not obtained and specific results were presented to a high of 7.06 for a research use when consent was obtained and specific results were presented. Participants rated scenarios in which consent was obtained as more appropriate than when consent was not obtained (difference, 1.01 [95% CI, 0.69 to 1.34]; P<0.001). Participants rated scenarios in which the use was marketing as less appropriate than when the use was research (difference, -2.03 [CI, -2.27 to -1.78]; P<0.001). Unconsented research uses were rated as more appropriate than consented marketing uses (5.65 vs. 4.52; difference, 1.13 [CI, 0.87 to 1.39]). Participants rated hypothetical scenarios. Results could be vulnerable to nonresponse bias despite the high response rate. Although approaches to health information sharing emphasize consent, public opinion also emphasizes purpose, which suggests a need to focus more attention on the social value of information use. National Human Genome Research Institute.