Foundations for Meaningful Consent in Canada’s Digital Health Ecosystem: Findings from a Pan-Canadian Survey (Preprint)

2021 ◽  
Author(s):  
Nelson Shen ◽  
Iman Kassam ◽  
Haoyu Zhao ◽  
Wei Wang ◽  
Sarah Wickham ◽  
...  
Keyword(s):  
Health Services ◽  
Information Needs ◽  
Digital Health ◽  
Healthcare Providers ◽  
Data Access ◽  
Patient Access ◽  
Access Channel ◽  
Patient Consent ◽  
Data Source ◽  
Healthcare Privacy

BACKGROUND Patients are increasingly gaining online access to digital health services and expect to access their data from various sources through a central patient access channel. For digital health services to connect and mutually share data, it is critical to understand patient consent preferences to meet the privacy needs of Canadians. Understanding user consent requirements and information needs is necessary in developing a trustworthy and transparent consent management system to support patient access channels. OBJECTIVE The objective of this study was to understand (1) data control preferences, (2) information needs for consent, and (3) how preferences and needs may vary by different user characteristics. METHODS A secondary analysis of a national survey was completed using a retrospective descriptive study design. The cross-sectional survey, conducted in October 2019, used a series of vignettes and consent scenarios to develop a deeper understanding of Canadians’ privacy perspectives and preferences for consent management. Non-parametric tests, and logistic regression analyses were conducted to identify differences and associations between the various factors. RESULTS Of the 1017 total responses, 70.4% (716/1017) of participants self-identified as potential users. Almost all (672/716, 93.8%) felt the ability to control their data was important, while 53.8% (385/716) believed an “all or none” control at data source level was adequate. Most users prefer new data sources to be accessible by healthcare providers (546/716, 76.3%) and delegated parties (389/716, 54.3%) by default. Users with positive healthcare privacy experiences were more likely than users with poor experiences to grant default access to healthcare providers (OR 2.78, 95%CI 1.34-5.74) and less likely to grant access to no-one (OR 0.31, 95%CI 0.14-0.72). From a list of nine information elements found in consent forms, users selected an average of 5.70 (SD 2.66) and 5.63 (SD 2.84) items to feel informed in consenting to data access by care partners, and commercial digital health service providers respectively. There were significant differences (p<0.05) in information needs between the scenarios. CONCLUSIONS Many survey participants would register and use a patient access channel and believe the ability to control data access is important, especially as it pertains to access by those outside their care. Positive healthcare experiences were a significant factor in this decision, signaling the importance of providing positive healthcare privacy experiences in both physical and digital environments. These findings suggest broad “all-or-none” approach by data source may be accepted; however, approximately one-fifth of users were unable to decide. Although vignettes were used to introduce the questions, this study showed that more context is required for users to make an informed decision. Understanding their information needs will be critical, as these needs varied with use case, highlighting the importance of prioritizing and tailoring information to enable meaningful consent.

Transition from paediatric to adult healthcare for young people with cystic fibrosis: Parents’ information needs

2018 ◽  
Vol 22 (4) ◽  
pp. 646-657 ◽  
Author(s):  
Imelda Coyne ◽  
Helen Malone ◽  
Emma Chubb ◽  
Alison E While
Keyword(s):  
Cystic Fibrosis ◽  
Young People ◽  
Health Services ◽  
Information Needs ◽  
Online Survey ◽  
Legal Status ◽  
Healthcare Providers ◽  
Adult Child ◽  
Child Health Services ◽  
Adult Health

Parents of young people with cystic fibrosis (YPWCF) play an important role during the transition from paediatric to adult health services. There is limited evidence on parental information needs and the extent to which they are met. An online survey was conducted targeting a finite population of 190 parents of YPWCF in Ireland. Fifty-nine parents responded (31% response rate). Parents reported the need for more general preparation and timing of the transfer, more information regarding the differences between adult and child health services and how their child will self-manage his/her illness in the future. Most parents received information on the timing of transfer and new healthcare providers but reported being insufficiently informed about their legal status relating to medical confidentiality for their adult child and community resources available for their child after transition to adult health services. The findings highlight the importance of information and preparation for caregivers as well as young people to promote successful transition to adult healthcare. Providing parents with clear information and anticipatory guidance are simple changes in practice that may lead to improvements in transition experiences.

scholarly journals ‘We are very individual’: anticipated effects on stroke survivors of using their person-generated health data

2020 ◽  
Vol 27 (3) ◽  
pp. e100149
Author(s):  
Gerardo Luis Dimaguila ◽  
Frances Batchelor ◽  
Mark Merolli ◽  
Kathleen Gray
Keyword(s):  
Health Services ◽  
Information Technologies ◽  
Digital Health ◽  
Healthcare Providers ◽  
Health Behaviours ◽  
Stroke Care ◽  
Health Data ◽  
Care Process ◽  
Stroke Survivors ◽  
Patient Reported

BackgroundPerson-generated health data (PGHD) are produced by people when they use health information technologies. People who use PGHD may experience changes in their health and care process, such as engagement with their own healthcare, and their sense of social support and connectedness. Research into evaluating those reported effects has not kept up; thus, a method for measuring PGHD outcomes was previously designed and applied to the exemplar case of Kinect-based stroke rehabilitation systems. A key step of the method ensures that the patient’s voice is included. Allowing stroke survivors to participate in the development and evaluation of health services and treatment can inform healthcare providers on decisions about stroke care, and thereby improve health outcomes.ObjectiveThis paper presents the perspectives of stroke survivors and clinicians on the anticipated effects of stroke survivors’ use of PGHD from a poststroke simulated rehabilitation technology.MethodsThis study gathered the perspectives of stroke survivors and clinicians through three focus groups and three interviews, recruited for convenience. Participants were also asked questions intended to encourage them to comment on the initial items of the patient-reported outcome measure-PGHD. Deductive thematic analysis was performed.ResultsThis paper has further demonstrated that outcomes of using PGHD can be measured. For instance, stroke survivors described that using PGHD could result in positive, negative and nil effects on their health behaviours. Survivors and clinicians had varying perspectives in three of the six themes presented, and emphasise the importance of allowing stroke survivors to participate in the evaluation of digital health services.

scholarly journals Do You Need My Health Data - Just Ask: Using Blockchain Technology for Collaborative Patient-Centric Health Care

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Tharuka Rupasinghe
Keyword(s):  
Clinical Data ◽  
Data Analytics ◽  
Healthcare Providers ◽  
Data Access ◽  
Health Data ◽  
Smart Contracts ◽  
Secondary Use ◽  
Blockchain Technology ◽  
Patient Consent ◽  
Patient Centric

IntroductionAcquiring healthcare data for secondary use should benefit from a transparent and highly auditable process when handling patient consent. In the current healthcare infrastructure, the healthcare providers hold the stewardship for the patient data, which includes an authority to determine the data access often without involving the respective patients. The current approach to obtaining patient consent as a one-off task is inadequate to facilitate continuous communication among the patients, healthcare providers and data requestors to manage more personalised data access. Objectives and ApproachThis study explores a novel dynamic patient consent mechanism based on blockchain technology and smart contracts. The aim is to enable patients to actively participate in this process by dynamically managing data consent preferences. Furthermore, it also explores the feasibility of implementing a transparent and auditable collaborative access control infrastructure for clinical data analytics, where all the stakeholders can be involved in determining access to health data. ResultsThe solution has been designed leveraging the blockchain and smart contracts to ensure auditability and transparency of the consent management process where a set of smart contracts controls access to data with minimum human-interferences. In addition, multiple design goals such as data security, privacy, interoperability, legal compliance and accessibility have also been considered when designing a prototype solution. An empirical evaluation is planned to obtain feedback from stakeholders involved in health data sharing for secondary use. Conclusion / ImplicationsThe contribution of this research study is to augment the existing data acquisition procedures for clinical data analytics using blockchain and smart contracts. The proposed novel approach aims to empower and enable patients to play a more active role in controlling access to their data for secondary use. The study will also illuminate the opportunities and challenges which blockchain-based technologies can address related to creating collaborative patient-centric healthcare.

scholarly journals Digital Health Divide in South Asia: Ethical Concerns, Challenges, and Recommendations

2020 ◽  
Author(s):  
Md Mahbub Hossain ◽  
Wenting Weng ◽  
Sudip Bhattacharya ◽  
Hoimonty Mazumder ◽  
Farah Faizah
Keyword(s):  
Health Services ◽  
South Asia ◽  
Digital Divide ◽  
Digital Health ◽  
Healthcare Providers ◽  
Optimal Growth ◽  
Digital Platforms ◽  
Health Technologies ◽  
Ethical Concerns ◽  
Key Stakeholders

The continued development of digital health technologies is reforming health systems and services globally; however, the South Asian countries are experiencing a sub-optimal growth and use of such technologies. Thus, a digital divide in healthcare is affecting the potential transformations in health services and outcomes in this region. This implies inadequate access to the best possible health technologies for a majority of the population, raising ethical concerns for healthcare practice. We discuss such concerns and the underlying socio-ecological challenges at individual, community, society, and systems levels pertinent to the digital divide in healthcare and highlight the strategic recommendations to bridge the existing gaps. These challenges should be addressed through engaging key stakeholders in healthcare including patients, informal caregivers, healthcare providers, health services organizations, technological providers, local and regional regulatory organizations, and other entities who may inform the development and implementation of digital platforms for equitable health across populations in South Asia.

scholarly journals Implementing a digital health model of care in Australian youth mental health services: protocol for impact evaluation

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Sarah Piper ◽  
Tracey A. Davenport ◽  
Haley LaMonica ◽  
Antonia Ottavio ◽  
Frank Iorfino ◽  
...  
Keyword(s):  
Mental Health ◽  
Mental Health Services ◽  
Health Services ◽  
Impact Evaluation ◽  
Digital Health ◽  
Youth Mental Health ◽  
Model Of Care ◽  
Health Service Provision ◽  
Industrial Grade ◽  
The Impact

Abstract Background The World Economic Forum has recently highlighted substantial problems in mental health service provision and called for the rapid deployment of smarter, digitally-enhanced health services as a means to facilitate effective care coordination and address issues of demand. In mental health, the biggest enabler of digital solutions is the implementation of an effective model of care that is facilitated by integrated health information technologies (HITs); the latter ensuring the solution is easily accessible, scalable and sustainable. The University of Sydney’s Brain and Mind Centre (BMC) has developed an innovative digital health solution – delivered through the Youth Mental Health and Technology Program – which incorporates two components: 1) a highly personalised and measurement-based (data-driven) model of youth mental health care; and 2) an industrial grade HIT registered on the Australian Register of Therapeutic Goods. This paper describes a research protocol to evaluate the impact of implementing the BMC’s digital health solution into youth mental health services (i.e. headspace - a highly accessible, youth-friendly integrated service that responds to the mental health, physical health, alcohol or other substance use, and vocational concerns of young people aged 12 to 25 years) within urban and regional areas of Australia. Methods The digital health solution will be implemented into participating headspace centres using a naturalistic research design. Quantitative and qualitative data will be collected from headspace health professionals, service managers and administrators, as well as from lead agency and local Primary Health Network (PHN) staff, via service audits, Implementation Officer logs, online surveys, and semi-structured interviews, at baseline and then three-monthly intervals over the course of 12 months. Discussion At the time of publication, six headspace centres had been recruited to this study and had commenced implementation and impact evaluation. The first results are expected to be submitted for publication in 2021. This study will focus on the impact of implementing a digital health solution at both a service and staff level, and will evaluate digital readiness of service and staff adoption; quality, usability and acceptability of the solution by staff; staff self-reported clinical competency; overall impact on headspace centres as well as their lead agencies and local PHNs; and social return on investment.

scholarly journals Psychosocial impact of COVID-19 on cancer patients, survivors, and carers in Australia: a real-time assessment of cancer support services

2021 ◽  
Author(s):  
Rhiannon Edge ◽  
Carolyn Mazariego ◽  
Zhicheng Li ◽  
Karen Canfell ◽  
Annie Miller ◽  
...  
Keyword(s):  
Content Analysis ◽  
Real Time ◽  
Cancer Patients ◽  
Online Community ◽  
Information Needs ◽  
Healthcare Providers ◽  
Service Demand ◽  
Cancer Support ◽  
Cancer Council ◽  
Psychosocial Impacts

Abstract Purpose This study aimed to explore the psychosocial impacts of the coronavirus disease (COVID-19) pandemic on cancer patients, survivors, and carers in Australia. Methods Using real-time insights from two Cancer Council NSW services—131120 Information and Support Line and Online Community (CCOC) forums—we assessed service demand trends, distress levels (using the distress thermometer), and content from 131120 calls and online posts between 01 December 2019 and 31 May 2020. Emergent themes were identified through an inductive conventional content analysis with 131120 call notes, followed by a deductive directed content analysis on CCOC posts. Results In total, 688 COVID-19-related 131120 calls (n = 496) and online posts (n = 192) were analysed. Service demand peaked in March 2020 and self-reported distress peaked in May 2020 at an average of 8/10 [Mean = 7.5; SD = 0.9]. Five themes emerged from the qualitative analysis: psychological distress and fear of virus susceptibility, practical issues, cancer service disruptions, information needs, and carer Issues. Conclusions The psychosocial impacts of COVID-19 on people affected by cancer are multifaceted and likely to have long-lasting consequences. Our findings drove the development of six recommendations across three domains of support, information, and access. Cancer patients, survivors, and carers already face stressful challenges dealing with a cancer diagnosis or survivorship. The added complexity of restrictions and uncertainty associated with the pandemic may compound this. It is important that healthcare providers are equipped to provide patient-centred care during and after this crisis. Our recommendations provide points of consideration to ensure care is tailored and patient oriented.

scholarly journals Driving digital transformation of comprehensive primary health services at scale in India: an enterprise architecture framework

2021 ◽  
Vol 6 (Suppl 5) ◽  
pp. e005242
Author(s):  
Sunita Nadhamuni ◽  
Oommen John ◽  
Mallari Kulkarni ◽  
Eshan Nanda ◽  
Sethuraman Venkatraman ◽  
...  
Keyword(s):  
Primary Care ◽  
Health Services ◽  
Primary Healthcare ◽  
Enterprise Architecture ◽  
Digital Health ◽  
Security And Privacy ◽  
Primary Health ◽  
Architecture Framework ◽  
Primary Health Services ◽  
Enterprise Architecture Framework

In its commitment towards Sustainable Development Goals, India envisages comprehensive primary health services as a key pillar in achieving universal health coverage. Embedded in siloed vertical programmes, their lack of interoperability and standardisation limits sustainability and hence their benefits have not been realised yet. We propose an enterprise architecture framework that overcomes these challenges and outline a robust futuristic digital health infrastructure for delivery of efficient and effective comprehensive primary healthcare. Core principles of an enterprise platform architecture covering four platform levers to facilitate seamless service delivery, monitor programmatic performance and facilitate research in the context of primary healthcare are listed. A federated architecture supports the custom needs of states and health programmes through standardisation and decentralisation techniques. Interoperability design principles enable integration between disparate information technology systems to ensure continuum of care across referral pathways. A responsive data architecture meets high volume and quality requirements of data accessibility in compliance with regulatory requirements. Security and privacy by design underscore the importance of building trust through role-based access, strong user authentication mechanisms, robust data management practices and consent. The proposed framework will empower programme managers with a ready reference toolkit for designing, implementing and evaluating primary care platforms for large-scale deployment. In the context of health and wellness centres, building a responsive, resilient and reliable enterprise architecture would be a fundamental path towards strengthening health systems leveraging digital health interventions. An enterprise architecture for primary care is the foundational building block for an efficient national digital health ecosystem. As citizens take ownership of their health, futuristic digital infrastructure at the primary care level will determine the health-seeking behaviour and utilisation trajectory of the nation.

Performance evaluation of redundant OPC UA architecture for process control

2016 ◽  
Vol 39 (3) ◽  
pp. 334-343 ◽  
Author(s):  
Rafal Cupek ◽  
Kamil Folkert ◽  
Marcin Fojcik ◽  
Tomasz Klopot ◽  
Grzegorz Polaków
Keyword(s):  
Performance Evaluation ◽  
Process Control ◽  
Production Systems ◽  
Failure Detection ◽  
Data Access ◽  
Redundant Data ◽  
Output System ◽  
Data Source ◽  
Time Required ◽  
Classical Control

Classical control applications with a centralized logic and distributed input/output system are being replaced by dynamic environments of cooperating components. Thus, the OPC (Object Linking and Embedding for Process Control) UA (Unified Architecture) is becoming more popular, because the OPC Data Access substandard is not well suited for distributed systems. Moreover, in many production systems, redundant data servers are preferred, for financial and legal reasons. Providing performance evaluation gives an estimate of the time required (and data samples lost) to switch to a backup data source for redundant OPC UA architecture, depending on the failure detection method, number of variables and redundancy mode.

A free, open-source, offline digital health system for refugee care (Preprint)

2021 ◽  
Author(s):  
Henry Ashworth ◽  
Senan Ebrahim ◽  
Hassaan Ebrahim ◽  
Zahra Bhaiwala ◽  
Michael Chilazi
Keyword(s):  
Health Systems ◽  
Digital Health ◽  
Healthcare Providers ◽  
Lessons Learned ◽  
Extreme Weather Events ◽  
Mobile Clinic ◽  
Low Resource ◽  
Displaced Populations ◽  
Weather Events ◽  
Displaced People

BACKGROUND Rise of conflict, extreme weather events, and pandemics have led to larger displaced populations worldwide. Displaced populations have unique acute and chronic health needs that need to be met by low resource health systems. Electronic Health Records (EHRs) have been shown to improve health outcomes in displaced populations but need to be adapted to meet the constraints of these health systems. OBJECTIVE To describe the development and deployment of a EHR designed to care for displaced populations in low resource settings. METHODS Using a human-centered design approach we conducted in-depth interviews and focus groups with patients, healthcare providers, and administrators in Lebanon and Jordan to identify the essential EHR features. These features including modular workflows, multilingual interfaces, and offline-first capabilities led to the development of the Hikma Health EHR which has been deployed in Lebanon and Nicaragua. RESULTS We report the successes and challenges from 12 months of Hikma Health EHR deployment in a mobile clinic providing care to Syrian Refugees in the Bekaa Valley, Lebanon. Successes include the EHR’s ability to (1) increase clinical efficacy by providing detailed patient records, (2) prove adaptable to the threats of COVID-19, and (3) improve organizational planning. Lessons learned include technical fixes to methods of identifying patients through name or their medical record ID. CONCLUSIONS As the number of displaced people continues to rise globally, it is imperative that solutions are created to help maximize the healthcare they receive. Free, open-sourced and adaptable EHRs can enable organizations to better provide for displaced populations.

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