Gathering data for decisions: best practice use of primary care electronic records for research

In Australia, there is limited use of primary health care data for research and for data linkage between health care settings. This puts Australia behind many developed countries. In addition, without use of primary health care data for research, knowledge about patients' journeys through the health care system is limited. There is growing momentum to establish "big data" repositories of primary care clinical data to enable data linkage, primary care and population health research, and quality assurance activities. However, little research has been conducted on the general public's and practitioners' concerns about secondary use of electronic health records in Australia. International studies have identified barriers to use of general practice patient records for research. These include legal, technical, ethical, social and resource-related issues. Examples include concerns about privacy protection, data security, data custodians and the motives for collecting data, as well as a lack of incentives for general practitioners to share data. Addressing barriers may help define good practices for appropriate use of health data for research. Any model for general practice data sharing for research should be underpinned by transparency and a strong legal, ethical, governance and data security framework. Mechanisms to collect electronic medical records in ethical, secure and privacy-controlled ways are available. Before the potential benefits of health-related data research can be realised, Australians should be well informed of the risks and benefits so that the necessary social licence can be generated to support such endeavours.Rachel Canaway, Douglas IR Boyle, Jo‐Anne E Manski‐Nankervis, Jessica Bell, Jane S Hocking, Ken Clarke, Malcolm Clark, Jane M Gunn, Jon D Emer

Samples and data accessibility in research biobanks. An explorative survey

Biobanks, which contain human biological samples and/or data, provide a crucial contribution to the progress of biomedical research. However, the effective and efficient use of biobank resources depends on their accessibility. In fact, making bio-resources promptly accessible to everybody may increase the benefits for society. Furthermore, optimizing their use and ensuring their quality will promote scientific creativity and, in general, contribute to the progress of bio-medical research. Although this has become a rather common belief, several laboratories are still secretive and continue to withhold samples and data. In this study, we conducted a questionnairebased survey in order to investigate sample and data accessibility in research biobanks operating all over the world. The survey involved a total of 46 biobanks. Most of them gave permission to access their samples (95.7%) and data (85.4%), but free and unconditioned accessibility seemed not to be common practice. The analysis of the guidelines regarding the accessibility to resources of the biobanks that responded to the survey highlights three issues: (i) the request for applicants to explain what they would like to do with the resources requested; (ii) the role of funding, public or private, in the establishment of fruitful collaborations between biobanks and research labs; (iii) the request of co-authorship in order to give access to their data. These results suggest that economic and academic aspects are involved in determining the extent of sample and data sharing stored in biobanks. As a second step of this study, we investigated the reasons behind the high diversity of requirements to access biobank resources. The analysis of informative answers suggested that the different modalities of resource accessibility seem to be largely influenced by both social context and legislation of the countries where the biobanks operate

Is Mental Illness an Access Barrier to Seeking and Receiving Abortion Services?

This study examines the relationship between one’s mental health status and access to abortion services. A review of the literature confirms that no prior research has been completed to determine whether or not mental health status is a barrier to seeking and/or receiving abortion services. A qualitative study using professionals from the mental health and abortion service fields was conducted to explore this relationship. Findings suggest that there are implications for some individuals experiencing mental illness. Another finding concludes that mental illness may be a secondary access barrier if one’s health insurance is provided by governmental funds. An implication for future research pertains to examining the degree to which mental illness may be a primary barrier to accessing abortion services

Ethical decision-making regarding infant viability: A discussion

© The Author(s) 2016. Background: There are no universally agreed rules of healthcare ethics. Ethical decisions and standards tend to be linked to professional codes of practice when dealing with complex issues. Objectives: This paper aims to explore the ethical complexities on who should decide to give infants born on the borderline of viability lifesaving treatment, parents or the healthcare professionals. Method: The paper is a discussion using the principles of ethics, professional codes of practice from the UK, Nursing Midwifery Council and UK legal case law and statute. Healthcare professionals' experiences that influence parental decision are also considered. Findings & Discussion: There are considerable barriers to an effective discussion taking place in an environment where clinical decisions have to be made quickly once the baby is born. This is compounded by the need and respect for parental autonomy and the difficulties they face when making a best interest's decision knowing that this could cause more harm than good for their infant child and balancing any decision they make with quality of life. Conclusion: On deciding whether to give lifesaving treatment born at the borderline of viability, it should be a joint decision between the parents and the neonatal team

Health Care for Undocumented Migrants: European Approaches

European countries have smaller shares of undocumented migrants than does the United States, but these individuals have substantial needs for medical care and present difficult policy challenges even in countries with universal health insurance systems. Recent European studies show that policies in most countries provide for no more than emergency services for undocumented migrants. Smaller numbers of countries provide more services or allow undocumented migrants who meet certain requirements access to the same range of services as nationals. These experiences show it is possible to improve access to care for undocumented migrants. Strategies vary along three dimensions: 1) focusing on segments of the population, like children or pregnant women; 2) focusing on types of services, like preventive services or treatment of infectious diseases; or 3) using specific funding policies, like allowing undocumented migrants to purchase insurance

Medical-Legal Partnerships to Support Continuity of Care for Immigrants Impacted by HIV: Lessons Learned from California.

The United States (US) has experienced a surge of anti-immigrant policies and rhetoric, raising concerns about the influence on health outcomes for immigrants living in the US. We conducted qualitative interviews (n = 20) with health care and social service providers, attorneys, and legal/policy experts in California to understand how agencies were maintaining access to HIV care and prevention for immigrant clients. We conducted a thematic analysis to describe the role of medical-legal partnerships (MLPs) and document best practices. Informants reported high demand for legal services. Referrals were facilitated by case managers, medical providers, and pre-existing relationships between clinics and legal agencies. Informants identified a need for additional funding and further guidance on screening for and supporting patients with legal needs. MLPs have the capacity to create sustainable, efficient, comprehensive structural changes that minimize barriers to HIV prevention and treatment and improve health outcomes among immigrant populations