Data Anonymization for Pervasive Healthcare: A Systematic Mapping Study (Preprint)

2021 ◽  
Author(s):  
Noura Al Moubayed ◽  
Zheming Zuo ◽  
Matthew Watson ◽  
Robert Hall ◽  
Chris Kennelly ◽  
...  
Keyword(s):  
Data Protection ◽  
Data Science ◽  
Clinical Care ◽  
Grey Literature ◽  
Medical Decision ◽  
Systematic Mapping Study ◽  
Legal Basis ◽  
Data Anonymization ◽  
Patient Consent ◽  
Privacy Models

BACKGROUND Data science offers an unparalleled opportunity to identify new insight into many aspects of human life, with recent advances in healthcare. Using data science in digital health raises significant challenges in data privacy, transparency, and trustworthiness. Recent regulations enforce the need for a clear legal basis to collect, process, and share data, for example under the General Data Protection Regulation (GDPR) and UK Data Protection Act (DPA) 2018. For healthcare providers, the legal basis of using the electronic health record (EHR) is strictly for clinical care. Any other use of the data requires thoughtful considerations of the legal context and direct patient consent. Identifiable personal and sensitive information must be sufficiently anonymized. Raw data are commonly anonymized to be used for research purposes with risk assessment for re-identification and utility. Whilst healthcare organizations have internal policies defined for information governance, there is a significant lack of practical tools and intuitive guidance about the use of data for research and modelling. Off-the-shelf data anonymization tools are developed frequently, but privacy-related functionalities are often incomparable for use in different problem domains. Additionally, tools to support measuring the risk of the anonymized data regarding re-identification against its usefulness exist but it can be unclear as to their efficacy. OBJECTIVE In this systematic literature mapping (SLM) study, we aim to alleviate those issues by reviewing the landscape of data anonymization for digital healthcare. METHODS We employ the Google Scholar, Web of Science, Elsevier Scopus, and PubMed for to retrieve academic studies published in English up to June 2020. Noteworthy, grey literature is also involved to initialize the search. We focus on review questions covering five bottom-up aspects: 1) basic anonymization operations; 2) privacy models; 3) re-identification risk and usability metrics; 4) off-the-shelf anonymization tools; 5) lawful basis for EHR data anonymization. RESULTS We identified 239 eligible studies in which 60 articles are related to general background introduction, 16 papers are selected for seven basic anonymization operations, 104 studies are covered for seventy-two conventional and machine-learning-based privacy models, seven and fifteen metrics are respectively included for measuring the re-identification risk and degree of usability in 4 and 19 papers, and twenty data anonymization software tools are explored in 36 publications. In addition, we also evaluate the practical feasibility of performing anonymization on HER data with reference to its usability of medical decision-making. Furthermore, we summarize the lawful basis to deliver guidance for practical EHR anonymization. CONCLUSIONS This SLM study indicates that data anonymization on EHR is theoretically achievable yet practically, requires more research efforts in practical implementations to balance privacy-preserving and usability, thus, to ensure more reliable healthcare applications.

Interventions to change clinician behaviour in relation to suicide prevention care in the emergency department: A scoping review protocol

2020 ◽  
Author(s):  
Hwayeon Danielle Shin ◽  
Christine Cassidy ◽  
Janet Curran ◽  
Lori Weeks ◽  
Leslie Anne Campbell ◽  
...  
Keyword(s):  
Emergency Department ◽  
Suicide Prevention ◽  
Behaviour Change ◽  
Clinical Care ◽  
Grey Literature ◽  
Allied Health Professionals ◽  
Wide Range ◽  
Knowledge And Attitude ◽  
Clinician Behaviour ◽  
Google Search

Objective: This review aims to explore, characterize, and map the literature on interventions implemented to change emergency department (ED) clinicians’ behaviour related to suicide prevention using the Behaviour Change Wheel (BCW) as a guiding theoretical framework. Introduction: An ED is a critical place for suicide prevention. Yet, many patients who present with suicide-related thoughts and behaviours are discharged without proper assessment or appropriate treatment. Supporting clinicians (who provide direct clinical care, including nurses, physicians, allied health professionals) to make the desired behaviour change following evidence-based suicide prevention care is an essential step toward improving patient outcomes. However, reviews to date have yet to take a theoretical approach to investigate interventions implemented to change clinicians’ behaviour. Inclusion criteria: This review will consider literature that includes interventions that target ED clinicians’ behaviour change related to suicide prevention. Behaviour change refers to observable practice changes as well as proxy measures of behaviour change including knowledge and attitude. There are many ways in which an intervention can change clinicians’ behaviour (e.g., education, altering service delivery). This review will include a wide range of interventions that target behaviour change regardless of the type but exclude interventions that exclusively target patients.Methods: Multiple databases will be searched: PubMed, PsycInfo, CINAHL and Embase. We will also include grey literature, including Google search, ProQuest Dissertations and Theses Global, and Scopus conference papers. Full text of included studies will be reviewed, critically appraised and extracted. Extracted data will be coded to identify intervention functions using the BCW. Findings will be summarized in tables accompanied by narrative reports.

scholarly journals Record linkage of routine data with cohorts’ data of infants under European and Portuguese law

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
J Doetsch ◽  
I Lopes ◽  
R Redinha ◽  
H Barros
Keyword(s):  
Big Data ◽  
Data Processing ◽  
Data Protection ◽  
Record Linkage ◽  
Data Science ◽  
Personal Data ◽  
Routine Data ◽  
Cohort Data ◽  
Education Data ◽  
Explicit Consent

Abstract The usage and exchange of “big data” is at the forefront of the data science agenda where Record Linkage plays a prominent role in biomedical research. In an era of ubiquitous data exchange and big data, Record Linkage is almost inevitable, but raises ethical and legal problems, namely personal data and privacy protection. Record Linkage refers to the general merging of data information to consolidate facts about an individual or an event that are not available in a separate record. This article provides an overview of ethical challenges and research opportunities in linking routine data on health and education with cohort data from very preterm (VPT) infants in Portugal. Portuguese, European and International law has been reviewed on data processing, protection and privacy. A three-stage analysis was carried out: i) interplay of threefold law-levelling for Record Linkage at different levels; ii) impact of data protection and privacy rights for data processing, iii) data linkage process' challenges and opportunities for research. A framework to discuss the process and its implications for data protection and privacy was created. The GDPR functions as utmost substantial legal basis for the protection of personal data in Record Linkage, and explicit written consent is considered the appropriate basis for the processing sensitive data. In Portugal, retrospective access to routine data is permitted if anonymised; for health data if it meets data processing requirements declared with an explicit consent; for education data if the data processing rules are complied. Routine health and education data can be linked to cohort data if rights of the data subject and requirements and duties of processors and controllers are respected. A strong ethical context through the application of the GDPR in all phases of research need to be established to achieve Record Linkage between cohort and routine collected records for health and education data of VPT infants in Portugal. Key messages GDPR is the most important legal framework for the protection of personal data, however, its uniform approach granting freedom to its Member states hampers Record Linkage processes among EU countries. The question remains whether the gap between data protection and privacy is adequately balanced at three legal levels to guarantee freedom for research and the improvement of health of data subjects.

scholarly journals Scoping review protocol: bladder cancer in Nigeria: what are the gaps in clinical care and research?

BMJ Open ◽  
2021 ◽  
Vol 11 (1) ◽  
pp. e041894
Author(s):  
Joyce Kibaru ◽  
Pinky Kotecha ◽  
Abdulkarim Muhammad Iya ◽  
Beth Russell ◽  
Muzzammil Abdullahi ◽  
...  
Keyword(s):  
Bladder Cancer ◽  
Scoping Review ◽  
Low Income ◽  
Clinical Care ◽  
Grey Literature ◽  
Case Series ◽  
Cochrane Library ◽  
Future Research ◽  
Scoping Reviews ◽  
Local Risk

IntroductionBladder cancer (BC) is the 10th common cancer worldwide and ranks seventh in Nigeria. This scoping review aims to identify the gaps in clinical care and research of BC in Nigeria as part of the development of a larger national research programme aiming to improve outcomes and care of BC.Methods and analysisThis review will be conducted according to Arksey and O’Malley scoping review methodology framework. The following electronic databases will be searched: Medline (using the PubMed interface), Ovid Gateway (Embase and Ovid), Cochrane library and Open Grey literature. Two independent reviewers will screen titles and abstracts and subsequently screen full-text studies for inclusion, any lack of consensus will be discussed with a third reviewer. Any study providing insight into the epidemiology or treatment pathway of BC (RCTs, observations, case series, policy paper) will be included. A data chart will be used to extract relevant data from the included studies. Results will be reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews. A consultation process will be carried out with a multidisciplinary team of Nigerian healthcare professionals, patients and scientists.Ethics and disseminationThe results will be disseminated through peer-reviewed publications. By highlighting the key gaps in the literature, this review can provide direction for future research and clinical guidelines in Nigeria (and other low-income and middle-income countries), where BC is more prevalent due to local risk factors and healthcare settings.

scholarly journals Population-Based Linkage of Big Data in Dental Research

2018 ◽  
Vol 15 (11) ◽  
pp. 2357 ◽  
Author(s):  
Tim Joda ◽  
Tuomas Waltimo ◽  
Christiane Pauli-Magnus ◽  
Nicole Probst-Hensch ◽  
Nicola Zitzmann
Keyword(s):  
Clinical Trials ◽  
Big Data ◽  
Healthcare Services ◽  
Population Based ◽  
Services Research ◽  
Research Education ◽  
Data Anonymization ◽  
Dental Research ◽  
Epidemiological Surveys ◽  
Patient Consent

Population-based linkage of patient-level information opens new strategies for dental research to identify unknown correlations of diseases, prognostic factors, novel treatment concepts and evaluate healthcare systems. As clinical trials have become more complex and inefficient, register-based controlled (clinical) trials (RC(C)T) are a promising approach in dental research. RC(C)Ts provide comprehensive information on hard-to-reach populations, allow observations with minimal loss to follow-up, but require large sample sizes with generating high level of external validity. Collecting data is only valuable if this is done systematically according to harmonized and inter-linkable standards involving a universally accepted general patient consent. Secure data anonymization is crucial, but potential re-identification of individuals poses several challenges. Population-based linkage of big data is a game changer for epidemiological surveys in Public Health and will play a predominant role in future dental research by influencing healthcare services, research, education, biotechnology, insurance, social policy and governmental affairs.

scholarly journals Consent for the discontinuation of life-prolonging treatment in cancer patients: a retrospective comparative analysis before and after the enforcement of the Life Extension Medical Decision law

2020 ◽  
Author(s):  
YuJin Chung ◽  
JinHo Beom ◽  
JiEun Lee ◽  
Incheol Park ◽  
Junho Cho
Keyword(s):  
Emergency Room ◽  
Hospital Stay ◽  
Cancer Patients ◽  
Average Length ◽  
Length Of Hospital Stay ◽  
Life Extension ◽  
Medical Decision ◽  
Patient Consent ◽  
Before And After ◽  
The Law

Abstract Background The Life Extension Medical Decision law enacted on February 4, 2018 in South Korea was the first to consider the suspension of nonsensical life-prolonging treatment, and its enactment raised big controversy in Korean society. However, there is no study on whether the actual life-prolonging treatment for patients has decreased after enforcing the law. This study aimed to compare the provision of patient consent before and after the enforcement of the law among cancer patients who visited a tertiary university hospital's emergency room to understand the effects of the law on cancer patients' clinical care. Methods This retrospective single cohort study included advanced cancer patients over 19 years of age who visited the emergency room at a tertiary university hospital. The two study periods were as follows: from February 2017 to January 2018 (before) and from May 2018 to April 2019 (after). The primary outcome was the average length of hospital stay. The consent rate for cardiopulmonary resuscitation (CPR), intubation, continuous renal replacement therapy (CRRT), and intensive care unit (ICU) admission were the secondary outcomes. Results The average length of hospital stay decreased after the law was enforced, from 4 days to 2 days (p= 0.001). The rates of direct transfers to secondary and nursing hospitals increased from 8.2% to 21.2% (p=0.001) and from 1.0% to 9.7%, respectively (p<0.001). The rate of provision of consent for admission to the ICU decreased from 6.7% to 2.3% (p=0.032). For CPR and CRRT, the rate of provision of consent decreased from 1.0% to 0.0% and from 13.9% to 8.8%, respectively, but the differences were not significant (p=0.226 and p=0.109, respectively). Conclusion According to previous research, for patients wishing only conservative treatment, the reduction in hospital stays at tertiary hospitals ultimately reduces the physical, emotional, financial burdens and also improves the quality of end-of-life at home or in a hospice facility. In this context, this research ultimately show that the purpose of the LEMD law has been achieved. Further research in several hospitals including those patients who completed the consent after hospitalization is needed to generalize the clinical implication of the LEMD law.

6. Confidentiality

2020 ◽  
pp. 273-319
Author(s):  
Jonathan Herring
Keyword(s):  
Health Information ◽  
Data Protection ◽  
Patient Access ◽  
Legal Basis ◽  
Ethical Aspects ◽  
Medical Confidentiality ◽  
Legal Remedies ◽  
Legal Remedy

This chapter examines the legal and ethical aspects of medical confidentiality. The discussion include the legal basis of confidentiality; defences to claims of breach of confidentiality; the Data Protection Act 1998; legal remedies in confidentiality cases; patient access to their own health information; and ethical arguments for and against confidentiality. Underpinning this chapter is the tension between requiring that a patient’s confidences are kept and the fact that sometimes there is an overwhelming reason why confidentiality needs to be breached. A further difficulty for this topic is that once confidentiality has been breached it can be very difficult to formulate an effective legal remedy.

5. Confidentiality

2018 ◽  
Author(s):  
Jonathan Herring
Keyword(s):  
Health Information ◽  
Data Protection ◽  
Patient Access ◽  
Legal Basis ◽  
Ethical Aspects ◽  
Medical Confidentiality ◽  
Legal Remedies ◽  
Legal Remedy

This chapter examines the legal and ethical aspects of medical confidentiality. The discussion include the legal basis of confidentiality; defences to claims of breach of confidentiality; the Data Protection Act 1998; legal remedies in confidentiality cases; patient access to their own health information; and ethical arguments for and against confidentiality. Underpinning this chapter is the tension between requiring that a patient’s confidences are kept and the fact that sometimes there is an overwhelming reason why confidentiality needs to be breached. A further difficulty for this topic is that once confidentiality has been breached it can be very difficult to formulate an effective legal remedy.

Reducing overuse by recognising the unintended harms of good intentions

2019 ◽  
pp. bmjebm-2019-111247
Author(s):  
David Slawson ◽  
Allen F Shaughnessy
Keyword(s):  
Decision Making ◽  
Medical Decision Making ◽  
Clinical Care ◽  
Critical Role ◽  
Medical Decision ◽  
Wide Acceptance ◽  
Hierarchy Of Evidence ◽  
Healthcare Interventions

Overdiagnosis and overtreatment—overuse—is gaining wide acceptance as a leading nosocomial intervention in medicine. Not only does overuse create anxiety and diminish patients’ quality of life, in some cases it causes harm to both patients and others not directly involved in clinical care. Reducing overuse begins with the recognition and acceptance of the potential for unintended harm of our best intentions. In this paper, we introduce five cases to illustrate where harm can occur as the result of well-intended healthcare interventions. With this insight, clinicians can learn to appreciate the critical role of probability-based, evidence-informed decision-making in medicine and the need to consider the outcomes for all who may be affected by their actions. Likewise, educators need to evolve medical education and medical decision-making so that it focuses on the hierarchy of evidence and that what ‘ought to work’, based on traditional pathophysiological, disease-focused reasoning, should be subordinate to what ‘does work’.

Hospital quality indicators: a systematic review

2019 ◽  
Vol 32 (2) ◽  
pp. 474-487 ◽  
Author(s):  
Juliana Zeni Breyer ◽  
Juliana Giacomazzi ◽  
Regina Kuhmmer ◽  
Karine Margarites Lima ◽  
Luciano Serpa Hammes ◽  
...  
Keyword(s):  
Systematic Review ◽  
Quality Indicators ◽  
Emergency Services ◽  
Clinical Care ◽  
Grey Literature ◽  
Professional Associations ◽  
Hospital Quality ◽  
Healthcare Organizations ◽  
Content Type ◽  
Process And Outcome

PurposeThe purpose of this paper is to identify and describe hospital quality indicators, classifying them according to Donabedian’s structure, process and outcome model and in specific domains (quality, safety, infection and mortality) in two care divisions: inpatient and emergency services.Design/methodology/approachA systematic review identified hospital clinical indicators. Two independent investigators evaluated 70 articles/documents located in electronic databases and nine documents from the grey literature, 35 were included in the systematic review.FindingsIn total, 248 hospital-based indicators were classified as infection, safety, quality and mortality domains. Only 10.2 percent were identified in more than one article/document and 47 percent showed how they were calculated/obtained. Although there are scientific papers on developing, validating and hospital indicator assessment, most indicators were obtained from technical reports, government publications or health professional associations.Research limitations/implicationsThis review identified several hospital structure, process and outcome quality indicators, which are used by different national and international groups in both research and clinical practice. Comparing performance between healthcare organizations was difficult. Common clinical care standard indicators used by different networks, programs and institutions are essential to hospital quality benchmarking.Originality/valueTo the authors’ knowledge, this is the first systematic review to identify and describe hospital quality indicators after a comprehensive search in MEDLINE/PubMed, etc., and the grey literature, aiming to identify as many indicators as possible. Few studies evaluate the indicators, and most are found only in the grey literature, and have been published mostly by government agencies. Documents published in scientific journals usually refer to a specific indicator or to constructing an indicator. However, indicators most commonly found are not supported by reliability or validity studies.

scholarly journals Patient Perspectives on Advance Care Planning via a Patient Portal

2019 ◽  
Vol 36 (8) ◽  
pp. 682-687 ◽  
Author(s):  
Sarah R. Jordan ◽  
Adreanne Brungardt ◽  
Phoutdavone Phimphasone-Brady ◽  
Hillary D. Lum
Keyword(s):  
Health Care ◽  
Advance Care Planning ◽  
Clinical Care ◽  
Patient Perspectives ◽  
Medical Decision ◽  
Patient Portal ◽  
Care Planning ◽  
Power Of Attorney ◽  
Regional Health Care ◽  
Advance Care

Background:Patient portals can offer patients an opportunity to engage in the advance care planning (ACP) process outside of clinical visits.Objective:To describe patient perspectives on use of patient portal-based ACP tools.Design:Interviews with patients who used portal-based ACP tools. The tools included an electronic Medical Durable Power of Attorney (MDPOA) form to designate a medical decision maker, a patient-centered educational web page, online messaging, and patient access to completed advance directives stored in the electronic health record (EHR).Setting:Regional health-care system with a common EHR.Measurements:Semistructured interviews with purposefully sampled patients who used the ACP tools. Questions explored motivations for using the tools and perceptions about how the tools fit into ACP. Analysis followed a grounded hermeneutic editing approach.Results:From 46 patients (mean age: 49, 63% female), 4 key themes emerged: (1) individualized explorations of the ACP tools, (2) personal initiation and engagement with ACP tools through the portal, (3) value of connecting ACP portal tools to clinical care, and (4) practicality of the ACP tools. Patients described benefits of communicating with health-care team members who referred them to online ACP tools, as well as having the electronic MDPOA form connected to clinical care.Conclusions:Patients considered the portal-based ACP tools to be practical and feasible to use within the scope of their own ACP experiences. Further study is needed to understand whether portal-based ACP tools increase the quality and quantity of ACP conversations and documentation that is available to inform medical decision-making.

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