Protection Of Personal Health Information Research Articles

Advancing immunisation information systems: a proposal for the “unvaccinated registry”

Abstract Through a systematic review of 253 studies, we identified significant advancements in IIS functionalities including real-time data access, interoperability, and life-course vaccination records, crucial for robust public health responses. Our review reveals that vaccinations are vital for public health and societal welfare; however, vaccine hesitancy is a significant barrier, driven by complex factors. Most IIS implementations predominantly utilise web-based platforms focused on children’s vaccinations with features that enhance data interoperability and public health surveillance. Despite these advancements, gaps in vaccine coverage and hesitancy mapping persist due to suboptimal data integration and system interoperability. Parallelly, we propose a comprehensive registry that includes unvaccinated individuals, aiming to address vaccine hesitancy by integrating demographic and socio-economic data. This initiative promises to enhance health equity by providing actionable insights into vaccination gaps and facilitating targeted interventions. Ethical considerations, particularly data privacy, are paramount, as well as adhering to regulations such as GDPR to ensure the protection of personal health information. The integration of IIS with a registry that includes unvaccinated populations represents a transformative approach to public health, potentially increasing vaccine coverage and effectively informing policy decisions. This dual strategy leverages not only technological advancements but also incorporates essential behavioural insights, offering a path forward in the ongoing battle against vaccine-preventable diseases. This model aligns with the Italian National Vaccination Prevention Plan and underscores proactive, evidence-based strategies to enhance vaccination uptake, serving as a cornerstone for broader application in other national contexts.

Study on Prosecutorial Public Interest Litigation in the Protection of Personal Health Information

As mentioned above, with the continuous development of big data in the world, there are numerous incidents of using this technology to infringe on personal health information, and it has brought personal, property and spiritual damages to the subject of the information and even his/her family members. China's Personal Information Protection Law explicitly incorporates personal information protection into the statutory scope of prosecutorial public interest litigation, the procuratorate shoulders the burden of safeguarding the public interests of the state and society, and is actively exploring the path of protection related to personal health information.

21st Century Cures Act ONC Rule: Implications for Adolescent Care and Confidentiality Protections

Ensuring the confidentiality and protection of health information is the standard of care for adolescents. In 2023 and beyond, the protection of personal health information is more critical than ever. The 21st Century Cures Act Office of the National Coordinator for Health Information Technology Rule, with its requirements for the broad sharing of electronic health information and ban on "information blocking," poses serious concerns for confidentiality in adolescent health care delivery. The coronavirus disease 2019 pandemic has rapidly increased the use of telehealth and, thereby, patient portal use for adolescent health records, increasing risks for disclosure. Understanding the legal and clinical underpinnings for confidential adolescent health services and the clinical challenges and health information technology limitations presented by the Office of the National Coordinator for Health Information Technology Rule is key to providing quality adolescent health services while implementing the Rule. A framework is presented to facilitate decision-making in individual cases by clinicians.

Postsurgery paths and outcomes for hip fracture patients (POST-OP HIP PATHS): a population-based retrospective cohort study protocol

IntroductionHip fracture patients receive varying levels of support posthip fracture surgery and often experience significant disability and increased risk of mortality. Best practice guidelines recommend that all hip fracture patients...

Association of direct oral anticoagulant-proton pump inhibitor cotherapy with adverse outcomes: protocol for a population-based cohort study

IntroductionProton pump inhibitors (PPIs) are widely used for primary and secondary prevention of upper gastrointestinal bleeding. However, there remains controversy about the overall net clinical benefit of PPIs (omeprazole, rabeprazole,...

Privacy and safety: Issues of dual compliance in high-secure and other forensic psychiatric hospitals

Health care organizations are obligated to provide safe and effective treatment to their patients and also protect the safety of their workers. This paper analyzes the tensions arising from legislative regimes that, respectively, protect privacy and workplace safety, using a large, tertiary high-secure forensic psychiatric hospital in Ontario, Canada, as an example. In Ontario, the Personal Health Information Protection Act (PHIPA) prohibits personal health information (PHI) from being disclosed to individuals who fall outside the “circle of care,” including nonclinical employees who have direct involvement with patients and may be at risk of violence. PHIPA permits the disclosure of information where there is a risk of violence, but the statute's scheme for privacy protection was not designed to address, and may not be compatible with, the operations and requirements of high-secure forensic and other psychiatric hospitals. At the same time, the Occupational Health and Safety Act (OHSA) creates a regulatory framework that sets health and safety standards, including an employer's duty to disclose the risk of violence. OHSA prosecutions and proceedings demonstrate how these duties have been enforced against psychiatric hospitals. We examine this regulatory backdrop, explaining that PHIPA provides little guidance to psychiatric hospitals, where the risk of violence is elevated. We also discuss issues of dual compliance that arise from a hospital's legal obligations under PHIPA and OHSA. Finally, we turn to the ongoing clinical and operational challenges, suggesting strategies for increasing staff safety. These include strengthening the therapeutic alliance and providing patients with the option of consenting to disclosure of PHI to those outside the circle of care.

The Protection Mechanism of Personal Health Information in the Digital Economy Environment.

With the application of big data technology in the medical field, personal health information is experiencing unprecedented challenges while showing great value. Opportunities and risks are like two sides of the same coin, and the rapid development of science and technology has not only brought valuable opportunities, but also made modern society seem to have developed into a risk society. Although countries around the world are committed to promoting the development and application of medical data and pay great attention to the protection of personal health information, the risk attributes of personal health information have rarely been mentioned before. This article first introduces the origin and development of medical big data, paving the way for the special risks faced by personal health information in this context. Then, through the introduction of concepts and characteristics, the content of personal health information is accurately defined. Next, according to a large number of personal health information security incidents, the new semantic scope of personal health information risk in the medical big data environment is analyzed, the necessity of personal health information risk regulation is emphasized, and the value conflicts that may occur in the process of personal health information risk regulation are clarified, laying the groundwork for the establishment of the risk decision-making procedure in the following article.

Data protection, data management, and data sharing: Stakeholder perspectives on the protection of personal health information in South Africa.

The Protection of Personal Information Act (POPIA) 2013 came into force in South Africa on 1 July 2020. It seeks to strengthen the processing of personal information, including health information. While POPIA is to be welcomed, there are concerns about the impact it will have on the processing of health information. To ensure that the National Health Laboratory Service [NHLS] is compliant with these new strict processing requirements and that compliance does not negatively impact upon its current screening, treatment, surveillance and research mandate, it was decided to consider the development of a NHLS POPIA Code of Conduct for Personal Health. As part of the process of developing such a Code and better understand the challenges faced in the processing of personal health information in South Africa, 19 semi-structured interviews with stakeholders were conducted between June and September 2020. Overall, respondents welcomed the introduction of POPIA. However, they felt that there are tensions between the strengthening of data protection and the use of personal information for individual patient care, treatment programmes, and research. Respondents reported a need to rethink the management of personal health information in South Africa and identified 5 issues needing to be addressed at a national and an institutional level: an understanding of the importance of personal information; an understanding of POPIA and data protection; improve data quality; improve transparency in data use; and improve accountability in data use. The application of POPIA to the processing of personal health information is challenging, complex, and likely costly. However, personal health information must be appropriately managed to ensure the privacy of the data subject is protected, but equally that it is used as a resource in the individual’s and wider public interest.

Excess Mortality in Long-Term Care Residents With and Without Personal Contact With Family or Friends During the COVID-19 Pandemic

Excess Mortality in Long-Term Care Residents With and Without Personal Contact With Family or Friends During the COVID-19 Pandemic

Developing Recommendations on a Consent Model for Health Information in Ireland using a Public Engagement Approach

Abstract A major challenge for healthcare in Ireland today is achieving an appropriate balance between the protection of personal health information, and the use and sharing of such information, to improve care and to provide a more seamless experience for patients receiving care across multiple healthcare settings. Ireland is at an early stage of eHealth adoption. There is a lack of clarity in relation to an appropriate model for the collection, use and sharing of personal health information. As we start to introduce new digital technologies, it is essential that a robust consent model is in place to protect people's rights in relation to health information. Drawing on international evidence, it is important to engage with the public around the introduction of new technologies, such as a national electronic health record. Engagement will ensure that new technologies are implemented in a way that is acceptable to the public; involving people in important decisions about their health information and ensuring that their rights are upheld. To advance this, HIQA, in partnership with the Department of Health and the HSE, conducted the first National Public Engagement on Health Information in Ireland to ask the public their views on how their health information should be collected, used and shared in Ireland. People were asked to share their views through a national survey and focus groups. Building on the findings from the National Public Engagement, HIQA has worked collaboratively with key stakeholders to develop recommendations on a consent model for health and social care. Guidance is also being developed to define the consent model for the various uses of health information. There is an additional need for comprehensive national policy and legislation in relation to health information in Ireland.

Effectiveness of BNT162b2 and mRNA-1273 COVID-19 Vaccines Against Symptomatic SARS-CoV-2 Infection and Severe COVID-19 Outcomes in Ontario, Canada

Background: We estimated the effectiveness of BNT162b2 and mRNA-1273 vaccines among residents of Ontario, Canada, where a policy to use an up to 16-week interval between doses was adopted in March 2021.Methods: We conducted a test-negative design study using linked province-wide laboratory, vaccination, and health administrative datasets. We included symptomatic individuals tested for SARS-CoV-2 by RT-PCR between 14 December 2020 and 19 April 2021. Study outcomes included symptomatic infection and associated severe outcomes (hospitalization or death). We estimated adjusted vaccine effectiveness (aVE) using multivariable logistic regression.Findings: Among 324,033 symptomatic tested individuals, 53,270 (16·4%) were positive for SARS-CoV-2 and 21,272 (6·6%) had received ≥1 dose of mRNA vaccine. Among test-positive cases, 2,479 (4·7%) had a severe outcome. aVE against symptomatic infection ≥14 days after receiving only 1 dose was 60% (95%CI, 57–64%), increasing from 48% (95%CI, 41–54%) at 14–20 days after the first dose to 71% (95%CI, 63–78%) at 35–41 days. aVE ≥7 days after receiving 2 doses was 91% (95%CI, 89–93%). Against severe outcomes, aVE ≥14 days after receiving 1 dose was 70% (95%CI, 60–77%) and aVE ≥7 days after receiving 2 doses was 98% (95%CI, 88–100%). We observed lower aVE against both outcomes after receiving 1 dose for adults aged ≥70 years, but aVE estimates for older adults were comparable to younger adults after 28 days. After 2 doses, we observed high aVE against E484K-positive variants.Interpretation: Our findings suggest that 2 doses of BNT162b2 and mRNA-1273 vaccines are highly effective against both symptomatic infection and associated severe outcomes for all circulating variants, with effectiveness lower after only a single dose, particularly for older adults shortly after the first dose.Funding Information: Canadian Institutes of Health Research, Public Health Agency of Canada, Ontario Ministries of Health and Long-Term Care.Declaration of Interests: KW is CEO of CANImmunize and serves on the data safety board for the Medicago COVID-19 vaccine trial. SMM has received unrestricted research grants from Merck, GlaxoSmithKline, Sanofi Pasteur, Pfizer, and Roche-Assurex for unrelated studies. SMM has received fees as an advisory board member for GlaxoSmithKline, Merck, Pfizer, Sanofi Pasteur, and Seqirus. CHR has received an unrestricted research grant from Pfizer for an unrelated study. The other authors declare no conflicts of interest.Ethics Approval Statement: ICES is a prescribed entity under Ontario’s Personal Health Information Protection Act (PHIPA). Section 45 of PHIPA authorizes ICES to collect personal health information, without consent, for the purpose of analysis or compiling statistical information with respect to the management of, evaluation or monitoring of, the allocation of resources to or planning for all or part of the health system. Projects that use data collected by ICES under section 45 of PHIPA, and use no other data, are exempt from REB review. The use of the data in this project is authorized under section 45 and approved by ICES’ Privacy and Legal Office.

A Retrospective Cohort Study of Healthcare Utilization Associated with Paravertebral Blocks for Chronic Pain Management in Ontario

ABSTRACT Background: Injections, particularly paravertebral blocks (PVBs), are frequently performed procedures in Ontario, Canada, for the management of chronic pain, despite limited evidence and risk of complications. Aim: This study examines usage patterns of PVBs to evaluate their effects on healthcare utilization and opioid prescribing. Methods: A retrospective cohort study in Ontario using administrative data. Ontario residents receiving their initial PVBs between July 1, 2013 and March 31, 2018 were included. Changes in use of other interventions, physician visits, and opioids were compared to the 12-month periods before and after index PVBs. Data use was authorized under section 45 of Ontario’s Personal Health Information Protection Act. Results: 47,723 patients received their initial PVBs in the study period. The rate of index PVBs increased from 1.61 per 10,000 population (2013) to 2.26 per 10,000 (2018). Initial PVBs were performed most commonly by family physicians (N = 25,042), followed by anesthesiologists (N = 14,195). 23,386 patients (49%) received 1 to 9 repeat PVBs in the 12 months after index PVB; 12,474 patients (26.15%) received 10 or more. Use of other nonimage guided interventional pain procedures per patient (mean±SD) increased from 2.19 ± 9.35 to 31.68 ± 52.26 in the year before and after index PVB. Relevant physician visits per patient (mean±SD) also increased from 2.92 ± 3.61 to 9.64 ± 11.77. Mean opioid dosing did not change significantly between the year before and the year after index PVB. Conclusion: PVBs are associated with increases in healthcare utilization and no change in opioid use patterns.

Characterizing the Process of Urgent Referrals and Transfers to a Large Tertiary Care Apheresis Centre in Ontario

Background: Therapeutic plasma exchange (TPE) and red blood cell exchange (RBCX) are potentially life-saving treatments. Given the specialized nature of care, apheresis is only offered in 7 centres in Ontario (population: 14.5 million), and therefore effectively functions as a provincial service. Patients can be referred to any apheresis centre, regardless of home local health integration network (LHIN). Referrals are directed by CritiCall Ontario (CritiCall), a 24/7 consultation and referral service funded by the Ontario Ministry of Health and Long-Term Care (MOHLTC). CritiCall facilitates the MOHLTC Life or Limb Policy, which provides that patients with life or limb threatening conditions will receive timely consultation, and if necessary, transfer to an appropriate centre within a best effort window of 4 hours. We used CritiCall data to examine referral, acceptance, and transfer processes of urgent TPE and RBCX apheresis calls to our centre. Methods: Time and process data for all CritiCall transfers to our centre for TPE and RBCX between October 2013 and December 2018 were included. TPE cases were analyzed if transferred for codes related to thrombotic thrombocytopenic purpura (TTP) or other thrombotic microangiopathies, and RBCX cases were analyzed only for acute sickle cell indications (e.g. stroke, acute chest syndrome). As such, we assumed all transfers to be "life or limb." Continuous variables were analyzed by linear regression. Categorical variables were analyzed using nonparametric tests. Data were provided in accordance with the Personal Health Information Protection Act, 2004 (www.criticall.org/Article/Privacy). Results: A total of 69 cases (43 TPE, 26 RBCX) were included. Median patient age was 51 (IQR 37) years for TPE and 29 (IQR 16) for RBCX. Most patients (61%) were female. Total time from referral to patient arrival at our centre was 243 (IQR 168) minutes. The greatest proportion of this total was from patient acceptance to arrival (169 [IQR 108] minutes), whereas time from referral to contact with the physician, and time from contact to patient acceptance were 23 (IQR 53) and 12 (IQR 41) minutes, respectively. The life or limb benchmark was met in 74% of cases, assessing time between acceptance and arrival. Fifty-two percent of the patients were accepted by the first apheresis physician contacted, with an average of 3 physicians contacted before a patient was accepted. Distance between referring and accepting centres was 39 (IQR 39) kilometres, and ground transportation was used most often. A minority of cases (7%) transferred were within our own LHIN. Multiple linear regression examining factors that contribute to total time from referral to arrival demonstrated that distance was independently associated with total time (p<0.001). Transfers took an additional 6.7 minutes for every 10 km between the referring and accepting centres. Male sex was also independently associated with total time (p=0.041), with 55 additional minutes required per transfer of male patients compared to female. Transfer time was not significantly associated with age, procedure (TPE vs. RBCX), mode of transport, number of centres contacted, or within-LHIN referral. Conclusions: We have described the processes of urgent apheresis referrals to our centre. The 4 hour "life or limb" benchmark was met in just under 75% of transfers, with the greatest delay occurring between patient acceptance and arrival. This is important given that time to initiate treatment is associated with better outcomes. Distance between centres is an important factor and potential target for improvement. Our analysis shows that >90% of cases were from outside our LHIN, reflecting a truly provincial catchment. Quality improvement strategies should be aimed at pairing referrals with nearest apheresis centres, and creating efficiency in the interval between patient acceptance and arrival. It is unclear from these data why male sex is associated with longer transfer times, but it is a target for further analysis. There are limitations of this analysis: data were not available for cases that were not ultimately transferred, nor for transfers to other centres. Future work will include examining patterns of province-wide transfers, as well as including blood bank data to further characterize steps involved in initiating aphaeresis. Acknowledgements: We thank M. Shaikh, J. Dempsey, M. Gavel at CritiCall for their contributions. Disclosures Kuo: Pfizer: Consultancy, Research Funding; Celgene: Consultancy; Apellis: Consultancy; Bioverativ: Membership on an entity's Board of Directors or advisory committees; Novartis: Consultancy, Honoraria; Alexion: Consultancy, Honoraria; Bluebird Bio: Consultancy; Agios: Consultancy, Membership on an entity's Board of Directors or advisory committees. Patriquin:Alexion: Honoraria, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Apellis: Honoraria, Membership on an entity's Board of Directors or advisory committees; Octapharma: Honoraria, Membership on an entity's Board of Directors or advisory committees.

"Clearly they are in the circle of care, but . . .": A qualitative study exploring perceptions of personal health information sharing with community pharmacists in an integrated care model.

Ontario's Health Links approach to care is an integrated care model designed to optimize care for patients with complex needs. Currently, community pharmacists have no formalized role. This study aimed to explore stakeholders' perceptions about privacy and its impact on community pharmacists' involvement with integrated care models. A qualitative study using semistructured telephone-based interviews was conducted. Participants worked in Ontario as pharmacists, providers in Health Links or team-based models or decision-makers in Health Links or health regions. Thematic analysis followed the Qualitative Analysis Guide of Leuven. Twenty-two participants were interviewed, and all but one commented on privacy or information sharing in integrating community pharmacists with integrated care models. The 4 themes identified were as follows: 1) what does the circle of care look like? 2) value of sharing information, 3) uncertainty of what information to share and 4) perceptions on how to share information. The concerns surrounding privacy of personal health information and who is included in the circle of care represented an important barrier for integration. Enablers to mitigate privacy concerns included relationship building between community pharmacists, patients and other health care professionals and mutual access to information-sharing platforms such as electronic health records. Providers' and decision-makers' perceptions about community pharmacists and privacy affect information sharing and are incongruent with Ontario's Personal Health Information Protection Act. Education is needed for health care professionals on legislation, especially as health systems move towards integrated care models to improve care. Can Pharm J (Ott) 2020;153:xx-xx.

Predictors of oral anticoagulant-associated adverse events in seniors transitioning from hospital to home: a retrospective cohort study protocol.

IntroductionOral anticoagulants (OACs) are widely prescribed in older adults. High OAC-related adverse event rates in the early period following hospital discharge argue for an analysis to identify predictors. Our objective is to identify and validate clinical and continuity of care variables among seniors discharged from hospital on an OAC, which are independently associated with OAC-related adverse events within 30 days.Methods and analysisWe propose a population-based retrospective cohort study of all adults aged 66 years or older who were discharged from hospital on an OAC from September 2010 to March 2015 in Ontario, Canada. The primary outcome is a composite of the first hospitalisation or emergency department visit for a haemorrhage or thromboembolic event or mortality within 30 days of hospital discharge. A Cox proportional hazards model will be used to determine the association between the composite outcome and a set of prespecified covariates. A split sample method will be adopted to validate the variables associated with OAC-related adverse events.Ethics and disseminationThe use of data in this project was authorised under section 45 of Ontario’s Personal Health Information Protection Act, which does not require review by a research ethics board. Results will be disseminated via peer-reviewed publications and presentations at conferences and will determine intervention targets to improve OAC management in upcoming randomised trials.Trial registration numberClinicalTrials.gov Identifier: NCT02777047; Pre-results.

Legislative Protection of Personal Health and Medical Information in the Era of Big Data

Legislative Protection of Personal Health and Medical Information in the Era of Big Data

Causes and Impacts of Personal Health Information (PHI) Breaches: A Scoping Review and Thematic Analysis

In light of the recent high-profile data breach incidents, and newly updated mandatory data breach notification laws, considerable global attention is forming around the protection of Personal health information (PHI). PHI breaches, generally described as an impermissible use or disclosure of protected personal health information, are extremely consequential for healthcare organizations and their patients and customers. This paper reports on a scoping review and thematic analysis of the literature studying the causes and impacts of PHI breaches. We started our review by identifying over 900 relevant articles, and through a rigorous process, included 28 articles for a detailed synthesis. Our findings highlight a number of direct and indirect causes of PHI breaches and their behavioral and operational impacts. Based on these findings, gaps in the literature are identified and implications for future research are discussed.

Practical Considerations for Implementing Virtual Care in Physical Medicine and Rehabilitation: For the Pandemic and Beyond.

This article outlines a practical approach to quickly implementing virtual care for physiatrists. This skill is relevant not only during times of a pandemic, when face to face care is impossible, but is also valuable when caring for patients who have physical, financial, logistic, or other challenges to on-site care. Key themes covered in this article include selecting appropriate virtual care platforms, consenting patients for virtual care and conducting successful virtual visits. It also reviews strategies for performing virtual physical examinations and engaging learners in virtual care.

Less than five is less than ideal: replacing the "less than 5 cell size" rule with a risk-based data disclosure protocol in a public health setting.

The Winnipeg Regional Health Authority (WRHA) is one of the largest and most diverse health regions in Canada. Within the WRHA, the Population and Public Health (PPH) Surveillance Team provides epidemiological support across a variety of public health service areas. We developed and deployed a risk-based data disclosure protocol that balances the need to share public health surveillance data with the need to protect personal health information. Unlike the conventional data disclosure standard adopted in Manitoba (suppress cell sizes < 5), the new protocol is based upon a risk-based re-identification approach that focuses on the size of the denominator instead of the numerator. This approach has allowed for innovation in data dissemination infrastructure within the unit that would not have been possible previously, including the deployment of public-facing cloud-based interactive maps and dashboards. It has also resulted in strengthened protection of personal health information as the risk of re-identification can now be precisely calculated across all data release situations. In challenging the "cell size less than five" rule, this project is an example of how a scientifically based data disclosure protocol can support a public health organization in meaningful sharing of population health data with community partners and the public. This helps ensure that program and policy responses are empirically based, strategically focused, and cross-jurisdictionally coordinated.

When personal health data is no longer "personal".

Enacted in 2000, the Canadian Personal Health Information Protection and Electronics Documents Act is an important piece of legislation aimed at safeguarding an individual's right to control their personal health information. Since this time, the world of data and analytics has shifted in terms of our potential to collect, integrate, and analyze both structured and unstructured data. The implications for these data advancements are endless for our healthcare system; however, challenges influenced by our approach to collecting, accessing, and analyzing data as well as patient consent to share personal health information mean public entities lag behind commercial players in harnessing these potential benefits. While there are examples of data analytics application successes, Canadian healthcare continues to lag behind other countries and commercial sectors. We are at a pivot point for system improvements requiring a collective approach to collection, storage, linkage, and application of personal healthcare data. In the chasm of this rests how we address patient consent. All health leaders can play a central role in advancing our application of data for system improvements. Strategies to support health leaders in achieving this potential are outlined in this article.