Privacy and Confidentiality in Process Mining: Threats and Research Challenges

Privacy and confidentiality are very important prerequisites for applying process mining to comply with regulations and keep company secrets. This article provides a foundation for future research on privacy-preserving and confidential process mining techniques. Main threats are identified and related to a motivation application scenario in a hospital context as well as to the current body of work on privacy and confidentiality in process mining. A newly developed conceptual model structures the discussion that existing techniques leave room for improvement. This results in a number of important research challenges that should be addressed by future process mining research.

Practicing patients’ rights in Iran: a review of evidence

Protection of patients' rights is critical in improving healthcare quality, and hence this study aimed at reviewing patient rights’ practices in healthcare organizations of Iran. Using systematic search, this review was conducted based on Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P). Several keywords, including "patient rights", "patient bills of rights" and "patients rights’ charter" were searched bilingually in the databases of SID, Magiran, PubMed, Scopus, and Web of Science from 2010 to 2021, and then, following a three-tier screening using the Critical Appraisal Skills Program (CASP) checklists, 76 articles were extracted. The degree of compliance with the Patients' Rights Charter (PRC) in healthcare organizations was 60.88% on average. As to the observance of the PRC dimensions, respectively, the highest and lowest scores were related to the "right to privacy and confidentiality" (70.16%) and "right to access an efficient complaining system" (53.01 %). Respect for patients' rights in organizations was assessed at a moderate level, and some aspects of patients' rights should be attended to immediately. Therefore, discrepancies in the dimensions of patients' rights and their implementation by organizations should be on the agenda of healthcare managers and policymakers.

Pediatric neurology and telehealth before and during SARS-CoV-2 pandemic

Telehealth has been known in medicine for over 70 years. Until the year 2020 it has been utilized in a limited setting to provide long-distance care for individuals residing in areas lacking health facilities. SARS-CoV-2 pandemic shifted the priorities of healthcare system towards COVID-19 infections, which resulted in the transition of non-emergency consultations to telemedicine in many countries. Since pediatric neurology requires frequent follow-up and multidisciplinary care, the purpose of our work is to determine the spectrum of use of telehealth in pediatric neurology before and during the pandemic. Secondly, we would like to discuss the differences of focus in tele-neurology for children patients between the pre-pandemic and during pandemic timeframes.Within 171 articles of PubMED database, 36 substantial articles on the introduction of telehealth to pediatric neurology were included in the review. 30.5% of the articles have included the implementation of telemedicine before the pandemic, 69.5% of the articles discussed improvements made after the pandemic started. The spectrum of disorders and interventions considered for telehealth included epilepsy, cerebral palsy, rare diseases, teleneuropsychology and teleneurorehabilitation. Among major differences between pre-pandemic and pandemic research, increase in international cooperation and discussion of not only medical, but also scientific and academic impact of the pandemic could be noted.Telehealth offers sustainable alternatives to many interventions which cannot be performed in-person during public health emergency such as SARS-CoV-2 pandemic. Despite high satisfaction of caregivers and healthcare professionals from the virtual visits, solutions are still far from perfection and need improvements to provide more support for the patients with various disorders, cover the concerns of privacy and confidentiality, as well as support patients from low-income and lack of electronic techology backgrounds.

Privacy and Confidentiality Concerns Related to the Use of mHealth Apps for HIV Prevention Efforts Among Malaysian Men Who Have Sex With Men: Cross-sectional Survey Study

Background The use of mobile health (mHealth), including smartphone apps, can improve the HIV prevention cascade for key populations such as men who have sex with men (MSM). In Malaysia, where stigma and discrimination toward MSM are high, the mHealth platform has the potential to open new frontiers for HIV prevention efforts. However, little guidance is available to inform researchers about privacy and confidentiality concerns unique to the development and implementation of app-based HIV prevention programs. Objective Given the lack of empirical data in this area, we aim to understand the privacy and confidentiality concerns associated with participation in a hypothetical app-based research study for HIV prevention efforts. Methods A cross-sectional, web-based survey was conducted between June and July 2020 among 355 Malaysian MSM. The survey included demographic and sexual health questions and a series of short videos describing a hypothetical app-based HIV prevention program, followed by questions related to privacy and confidentiality concerns in each step of the app-based program (ie, recruitment, clinical interaction, risk assessment, and weekly reminder). Multivariable logistic regression models were used to identify the correlates of willingness to use such an app-based program. Results Most of the participants (266/355, 74.9%) indicated their willingness to participate in a hypothetical mHealth app–based HIV prevention program. Participants expressed concerns about privacy, confidentiality, data security, and risks and benefits of participating in all stages of the app-based HIV research process. Multivariate analyses indicated that participants who had a higher degree of perceived participation benefits (adjusted odds ratio [aOR] 1.873; 95% CI 1.274-2.755; P=.001) were more willing to participate. In contrast, participants who had increased concerns about app-based clinical interaction and e-prescription (aOR 0.610; 95% CI 0.445-0.838; P=.002) and those who had a higher degree of perceived risks of participating (aOR 0.731; 95% CI 0.594-0.899; P=.003) were less willing to participate. Conclusions Overall, our results indicate that mHealth app–based HIV prevention programs are acceptable for future research on Malaysian MSM. The findings further highlighted the role of privacy and confidentiality, as well as the associated risks and benefits associated with participation in such a program. Given the ever-evolving nature of such technological platforms and the complex ethical–legal landscape, such platforms must be safe and secure to ensure widespread public trust and uptake.

Patient perception regarding privacy and confidentiality: A study from the emergency department of a tertiary care hospital in Karachi, Pakistan

Background and Objective: Maintaining privacy and ensuring confidentiality with patients is paramount to developing an effective patient-provider relationship. This is often challenging in over-crowded Emergency Departments (EDs). This survey was designed to explore patients’ perceptions on maintenance of privacy and confidentiality and their subsequent interactions with providers in a busy tertiary care hospital in Karachi. Methods: Trained nursing staff conducted structured interviews with 571 patients who presented to The Indus Hospital (TIH) ED from January to December 2020. All patients were 14 years of age or older, could speak and understand Urdu, and provide informed consent. Patients were asked about their perceptions of privacy and confidentiality in the ED and whether this affected their interactions with providers. Results: Respondents were primarily men (64%) under the age of 45 (62%) presenting for the first time (49%). The majority of patients felt that privacy and confidentiality were maintained, however 10% of patients reported that they had rejected examination due to privacy concerns and 15% of patients reported that they had changed or omitted information provided to a provider due to confidentiality concerns. There was correlation between privacy and confidentiality concerns and patient-provider interactions (p<0.0001). Conclusions: Despite the often over-crowded and busy environment of the ED, patients generally felt that privacy and confidentiality were maintained. Given the correlation between perception and behavior and the importance of an effective patient-provider relationship, particularly in the acute setting when morbidity and mortality is high, initiatives that focus on maintaining privacy and confidentiality should be pursued. doi: https://doi.org/10.12669/pjms.38.ICON-2022.5785 How to cite this:Saleem SG, Ali S, Ghouri N, Maroof Q, Jamal MI, Aziz T, et al. Patient perception regarding privacy and confidentiality: A study from the emergency department of a tertiary care hospital in Karachi, Pakistan. Pak J Med Sci. 2022;38(2):351-355. doi: https://doi.org/10.12669/pjms.38.ICON-2022.5785 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Perceptions of HIV Research Participation Among Gay, Bisexual, and Other Men who Have Sex with Men and Transgender and Nonbinary Adults: Results From a Midwest Pride Event

Human immunodeficiency virus (HIV) continues to disproportionately affect gay, bisexual, and other men who have sex with men (GBM) and transgender and nonbinary (trans/NB) individuals. This study investigated attitudes toward participation in HIV survey research, guided by Emanuel's framework for ethical clinical research (e.g., risk–benefit ratio, fair participant selection, respect for participants, social value, and collaborative partnership). GBM ( n = 294) and trans/NB ( n = 86) persons recruited at a Pride event in Milwaukee completed a survey assessing risks and benefits of participation in, and comfort responding to, sexual health surveys. Participants reported few ethical concerns (e.g., privacy and confidentiality), with notable differences by race, sexual orientation and gender identity, and prior research experiences. Implications for HIV research with GBM and trans/NB individuals are discussed.

RAZLOZI KOJI OPRAVDAVAJU OTKRIVANjE PROFESIONALNE TAJNE LEKARA

Medical practice and care has always included the duty of doctors to protect patients' confidiental information. However, this duty is not absolute. The subject of this paper is to identify the situations in which doctors are not bound by doctor - patient privilege, that is what are the exclusions in Serbian law that allow doctors to disclose patients’ confidential information. Considering current legal and ethical regulations related to this matter, the author analyzes each of the indetified reasons which justify disclosing doctor - patient confidential information. They are: the written consent of the patient or his legal representative; the need to protect a higher interest than the patient’s right to privacy and confidentiality of medical information; legal obligation to disclose certain information from the patient’s medical records; the court order. Assessing whether and to what extent the conditions have been met to apply each of these reasons for exclusion, the author of this paper findings that their introduction is justified and well balanced with the protection of other patient’s rights, the rights of third persons and the need to protect public health. In the concluding remarks, the author underlines that the method and extent of disclosing doctor - patient confidential information must be done for adequate purposes in order to protect patients’ confidential information in the best possible manner.

MyMaster : A Multifactor Authentication Scheme for Smart Home Device

Smart homes are one of the Internet of Things (IoT) applications most significant to enable people to operate intelligent devices on the Internet in their homes. However, when users can access an intelligent home system remotely, they have major privacy and confidentiality difficulties to overcome. Nothing has been done to improve the safety characteristics of an intelligent home with current research on authentication approaches. For example, to address these issues and to develop a reciprocal tracking authentication system with a critical aspect of a deal, we recommend an Internet based Smart Home System (IFTTT) model. As a controller and a safety guard, an IFTTT-Home Gateway provides a user with remote access to a Smart Home System within their company. The system is designed for mutual authentication with security features such as anonymity and full advance security by using Elliptical Curve Encryption, Nonces, XOR or cryptographic Hash functions. We also incorporate multi factor authentication (MFA) into the model to ensure more security and preventing privacy leakage.

Co-designing new tools for collecting, analysing and presenting patient experience data in NHS services: working in partnership with patients and carers

Background The way we collect and use patient experience data is vital to optimise the quality and safety of health services. Yet, some patients and carers do not give feedback because of the limited ways data is collected, analysed and presented. In this study, we worked together with researchers, staff, patient and carer participants, and patient and public involvement and engagement (PPIE) contributors, to co-design new tools for the collection and use of patient experience data in multiple health settings. This paper outlines how the range of PPIE and research activities enabled the co-design of new tools to collect patient experience data. Methods Eight public contributors represented a range of relevant patient and carer experiences in specialist services with varied levels of PPIE experience, and eleven members of Patient and Participation Groups (PPGs) from two general practices formed our PPIE group at the start of the study. Slide sets were used to trigger co-design discussions with staff, patient and carer research participants, and PPIE contributors. Feedback from PPIE contributors alongside verbatim quotes from staff, patient and carer research participants is presented in relation to the themes from the research data. Results PPIE insights from four themes: capturing experience data; adopting digital or non-digital tools; ensuring privacy and confidentiality; and co-design of a suite of new tools with guidance, informed joint decisions on the shaping of the tools and how these were implemented. Our PPIE contributors took different roles during co-design and testing of the new tools, which supported co-production of the study. Conclusions Our experiences of developing multiple components of PPIE work for this complex study demonstrates the importance of tailoring PPIE to suit different settings, and to maximise individual strengths and capacity. Our study shows the value of bringing diverse experiences together, putting patients and carers at the heart of improving NHS services, and a shared approach to managing involvement in co-design, with the effects shown through the research process, outcomes and the partnership. We reflect on how we worked together to create a supportive environment when unforeseen challenges emerged (such as, sudden bereavement).

Anonymiced Shareable Data: Using mice to Create and Analyze Multiply Imputed Synthetic Datasets

Synthetic datasets simultaneously allow for the dissemination of research data while protecting the privacy and confidentiality of respondents. Generating and analyzing synthetic datasets is straightforward, yet, a synthetic data analysis pipeline is seldom adopted by applied researchers. We outline a simple procedure for generating and analyzing synthetic datasets with the multiple imputation software mice (Version 3.13.15) in R. We demonstrate through simulations that the analysis results obtained on synthetic data yield unbiased and valid inferences and lead to synthetic records that cannot be distinguished from the true data records. The ease of use when synthesizing data with mice along with the validity of inferences obtained through this procedure opens up a wealth of possibilities for data dissemination and further research on initially private data.