Megan Prictor

University of Melbourne | MSD · Melbourne Law School

There has been keen interest in whether dynamic consent should be used in health research but few real-world studies have evaluated its use. Australian Genomics piloted and evaluated CTRL ('control'), a digital consent tool incorporating granular, dynamic decision-making and communication for genomic research. Individuals from a Cardiovascular Gene...

Importance Despite persistent inequalities in access to eye care services globally, guidance on a set of recommended, evidence-based eye care interventions to support country health care planning has not been available. To overcome this barrier, the World Health Organization (WHO) Package of Eye Care Interventions (PECI) has been developed. Object...

Objectives: To assess the use of NHMRC Indigenous research guidelines by Australian researchers and the degree of Aboriginal and Torres Strait Islander governance and participation in Indigenous health research. Design, setting, participants: Cross-sectional survey of people engaged in Indigenous health research in Australia, comprising respondents...

The Aotearoa New Zealand Integrated Data Infrastructure (IDI) is a national database containing a wide range of data about people and households. There is limited information about public views regarding its use for research. A qualitative study was undertaken to examine the views of forty individuals attending a large hospital in Auckland, includi...

Clinical decision support systems (CDSSs) are digital healthcare information systems that apply algorithms to patient data to generate tailored recommendations. They are designed to support, but neither dictate nor execute, clinical decisions. CDSSs can introduce new risks, both by design features that heighten clinician burden and by outright erro...

This paper provides a brief overview of the practice of, and research into, the recording of healthcare consultations between clinicians and patients. It has been prepared in conjunction with the launch of the University’s Collaborative for Better Health and Regulation.

Background: In Australia, national policy prioritises the integration of clinical genetic data with networked electronic medical records (EMRs) for enhanced coordination of care and clinical decision-making. Objective: To examine the needs, privacy expectations and concerns of patients, family members, patient advocates and clinicians in relation t...

Background The adoption of electronic health records (EHRs) and electronic medical records (EMRs) has been slow in the mental health context, partly because of concerns regarding the collection of sensitive information, the standardization of mental health data, and the risk of negatively affecting therapeutic relationships. However, EHRs and EMRs...

Data privacy breaches — unauthorised access to, disclosure, or loss of people’s personal information — are commonplace, particularly in the health sector. In Australia, provisions under the Privacy Act 1988 (Cth) and the My Health Records Act 2012 (Cth) require data breach notification to affected people and the regulator. However, this mandatory n...

Digital Mega-Studies' are entirely or extensively digitised, longitudinal, population-scale initiatives, collecting, storing, and making available individual-level research data of different types and from multiple sources, shaped by technological developments and unforeseeable risks over time. The Australian 'Gen V' project exemplifies this new re...

Indigenous health inequities persist in Australia due to a system of privilege and racism that has political, economic and social determinants, rather than simply genetic or behavioural causes. Research involving Aboriginal and Torres Strait Islander (‘Indigenous’) communities is routinely funded to understand and address these health inequities, y...

BACKGROUND The adoption of electronic health records (EHRs) and electronic medical records (EMRs) has been slow in the mental health context, partly because of concerns regarding the collection of sensitive information, the standardization of mental health data, and the risk of negatively affecting therapeutic relationships. However, EHRs and EMRs...

Worldwide, Chronic Kidney Disease (CKD), directly or indirectly, causes more than 2.4 million deaths annually with symptoms generally presenting late in the disease course. Clinical guidelines support the early identification and treatment of CKD to delay progression and improve clinical outcomes. This paper reports the protocol for the codesign, i...

The complexities of the informed consent process for participating in research in genomic medicine are well-documented. Inspired by the potential for Dynamic Consent to increase participant choice and autonomy in decision-making, as well as the opportunities for ongoing participant engagement it affords, we wanted to trial Dynamic Consent and to do...

Clinical decision support systems (CDSSs) provide a valuable tool for clinicians to aid in the care of patients with chronic disease. Various questions have emerged about their implications for the doctor's legal duty of care to their patients, in terms of recognition of risk, recall, testing and treatment. In this article, through an analysis of A...

Dynamic consent (DC) was originally developed in response to challenges to the informed consent process presented by participants agreeing to 'future research' in biobanking. In the past 12 years, it has been trialled in a number of different projects, and examined as a new approach for consent and to support patient engagement over time. There hav...

Dynamic Consent (DC) is both a model and a specific web-based tool that enables clear, granular communication and recording of participant consent choices over time. The DC model enables individuals to know and to decide how personal research information is being used and provides a way in which to exercise legal rights provided in privacy and data...

Dynamic consent (DC) is an approach to consent that enables people, through an interactive digital interface, to make granular decisions about their ongoing participation. This approach has been explored within biomedical research, in fields such as biobanking and genomics, where ongoing contact is required with participants. It is posited that DC...

The volume, variety and velocity of data available to companies about their employees is already significant and likely to increase. Employers hold data about employees that could be used to explore the relationship between workplace practice in their organisation and risks to employee health. However, there is significant uncertainty about whether...

Translator disclaimer ABSTRACT Objective: Mental health care is known to be poorly integrated into many health systems and could benefit from improved information sharing facilitated by electronic health records (EHRs). Specific issues appear to have limited the application of EHRs in mental health care, including the sensitivity of mental health-r...

Health information technologies, such as integrated electronic health records (iEHR), have been proposed as one way to facilitate more integrated healthcare and address the fragmentation of the healthcare system. An iEHR is an electronic record that is longitudinal, comprehensive, prospective, and person-centred. However, iEHRs raise concerns in he...

My Health Record (MyHR) is Australia's national personally-controlled electronic health record. Initially established in 2012, it moved from an opt-in to an opt-out system in 2018. This paper considers the privacy aspects of MyHR shared health summary. Drawing on Nissenbaum's theory of privacy as contextual integrity, we argue that the shift in the...

Information sharing is key to integrated, collaborative, and continuous care. People with a lived experience of mental illness may access several services across the health, mental health and social care sectors, which creates challenges for information sharing. The health informatics community has traditionally not prioritised social care informat...

Information sharing is key to integrated, collaborative, and continuous care. People with a lived experience of mental illness may access several services across the health, mental health and social care sectors, which creates challenges for information sharing. The health informatics community has traditionally not prioritised social care informat...

My Health Record (MyHR) is Australia's national personally-controlled electronic health record. Initially established in 2012, it moved from an opt-in to an opt-out system in 2018. This paper considers the privacy aspects of MyHR shared health summary. Drawing on Nissenbaum's theory of privacy as contextual integrity, we argue that the shift in the...

The General Data Protection Regulation (GDPR) sets the bar high for consent for the processing of personal data. In the UK, researchers have been directed to rely on legal bases other than consent for processing personal data for research purposes. Informed consent, nonetheless, and despite certain shortcomings, holds a central position in ethical...

Participation in biobanks tends to favor certain groups—white, middle-class, more highly-educated—often to the exclusion of others, such as indigenous people, the socially-disadvantaged and the culturally and linguistically diverse. Barriers to participation, which include age, location, cultural sensitivities around human tissue, and issues of lit...

This article was first published on Pursuit. Read the original article at https://pursuit.unimelb.edu.au/articles/patients-and-the-data-breach-notification-maze

In the United Kingdom (UK), transfer of genomic data to third countries is regulated by data protection legislation. This is a composite of domestic and European Union (EU) law, with EU law to be adopted as domestic law when Brexit takes place. In this paper we consider the content of data protection legislation and the likely impact of Brexit on t...

Radio interview, Pulse Radio Geelong

This article was first published on Pursuit. Read the original article at https://pursuit.unimelb.edu.au/articles/data-security-in-the-spotlight

http://www.federationpress.com.au/bookstore/book.asp?isbn=9781760021498

https://pursuit.unimelb.edu.au/articles/who-owns-your-dna

Informed consent is a critical component of clinical research. Different methods of presenting information to potential participants of clinical trials may improve the informed consent process. Audio-visual interventions (presented, for example, on the Internet or on DVD) are one such method. We updated a 2008 review of the effects of these interve...

Background: Many systematic reviews exist on interventions to improve safe and effective medicines use by consumers, but research is distributed across diseases, populations and settings. The scope and focus of such reviews also vary widely, creating challenges for decision-makers seeking to inform decisions by using the evidence on consumers' med...

Consumer-provider involvement in the delivery of mental health services has steadily increased in the past several decades; however, the effects on client and service outcomes have remained unclear. The objectives of this paper are to (a) summarize a Cochrane review of consumer-providers’ effects on client outcomes in statutory mental health servic...

This paper presents an overview of the history and achievements of the Cochrane Consumers and Communication Review Group, part of the international Cochrane Collaboration. It surveys the Group's establishment and structure, the scope of its Cochrane Reviews and the growth in its publication output over its 16-year history. The paper examines the Gr...

In mental health services, the past several decades has seen a slow but steady trend towards employment of past or present consumers of the service to work alongside mental health professionals in providing services. However the effects of this employment on clients (service recipients) and services has remained unclear.We conducted a systematic re...

Recent changes in coronial law in Australian jurisdictions have enabled inquests to adopt an expanded scope and have facilitated the participation of family members and other interested parties. Public interest bodies have increasingly sought to have input to coronial policy and practice. This article examines the involvement by public interest org...

Good communication between consumers and health professionals is fundamental to health care and a mechanism to ensure safe, effective treatment. There is growing recognition of the value of improving communication and increasing people's participation in health. This is reflected in research into interventions such health literacy interventions, se...

In this chapter, we review and discuss the current evidence and future research agenda for educational interventions directed to health professionals and consumers to improve their ability to communicate with one another. As communication interactions between patients and physicians shift to reflect a growing emphasis on patient-centred care and sh...

Communicating about cancer may help some children and adolescents understand the disease and its treatment and help them cope better with their cancer. Children and adolescents with cancer face many issues and may benefit from greater opportunities to talk to health professionals. Concerns about their illness and its treatment can result in psychol...

Informed consent is important for people who are thinking about participating in a clinical trial. Information for informed consent could be presented on the Internet, DVD, video cassette or by other means. We conducted thorough searches for randomised and quasi-randomised controlled trials of information about trial participation that contained so...

Contracts are a verbal or written agreement that a patient makes with themselves, with healthcare practitioners, or with carers, where participants commit to a set of behaviours related to the care of a patient. Contracts aim to improve the patients' adherence to treatment or health promotion programmes. To assess the effects of contracts between p...

A diagnosis of cancer creates multiple problems for affected families, including major changes in living patterns, roles and relationships. It has not been common practice for families and health practitioners to share information with children or adolescents about a family member's cancer, or to allow them to express their feelings about this. In...

Communicating about cancer may help some children and adolescents understand the disease and its treatment and help them cope better with their cancer Children and adolescents with cancer face many issues and may benefit from greater opportunities to talk to health professionals. Concerns about their illness and its treatment can result in psycholo...

Audiotaped recordings or written summaries of key consultations could help most adults with cancer. Many people find it hard to remember medical consultations. Providing a record of the conversation may help. The review of trials examined the effects of giving people with cancer audiotaped recordings or written summaries of consultations. Most peop...