Deep phenotyping research has the potential to improve understandings of social and structural factors that contribute to psychiatric illness, allowing for more effective approaches to address inequities that impact mental health.
But, in order to build upon the promise of deep phenotyping and minimize the potential for bias and discrimination, it will be important to incorporate the perspectives of diverse communities and stakeholders in the development and implementation of research projects.
This post is the introduction to our Ethical, Legal, and Social Implications of Deep Phenotyping symposium. All contributions to the symposium will be available here.
By Francis X. Shen
This digital symposium explores the ethical, legal, and social implications of advances in deep phenotyping in psychiatry research.
Deep phenotyping in psychiatric research and practice is a term used to describe the collection and analysis of multiple streams of behavioral and biological data, some of this data collected around the clock, to identify and intervene in critical health events.
By combining 24/7 data — on location, movement, email and text communications, and social media — with brain scans, genetics/genomics, neuropsychological batteries, and clinical interviews, researchers will have an unprecedented amount of objective, individual-level data. Analyzing this data with ever-evolving artificial intelligence (AI) offers the possibility of intervening early with precision and could even prevent the most critical sentinel events.
By John Tingle
The recently reported case of University College London Hospitals NHS Foundation Trust v MB [2020] EWHC 882 captures well the value of English common case law in resolving complex health care disputes within the context of the COVID-19 pandemic and more generally.
Mr Justice Chamberlain in the Queen’s Bench Division of the High Court of Justice ruled recently that a patient, known as MB, who had occupied an NHS bed for over a year, must vacate it and instead receive care in the community. Her room could be required urgently by COVID-19 patients and there would be an increased risk of MB contracting COVID-19 if she remained in hospital.
By Sarah Alawi
March was a month full of stress and anxiety around the uncertainties of the COVID-19 pandemic and the disruption of normal life.
Following Harvard Law School’s decision to evacuate campus in early March, most students – myself included – had to hurriedly pack our lives into suitcases and return home in the space of days.
For some of us, getting home (for me, New Zealand) meant having to travel internationally through airports and transit hubs amid a global pandemic. We landed on the other side to a new normal as the rest of the world caught on; we now live in quarantine “bubbles” while continuing to learn, meet and even socialize via Zoom. Our days are shadowed by restraint and a desperate hope to return to normalcy.
Suicide prevention needs to be taken more seriously globally by governments, health systems as an urgent public health concern.
WHO (World Health Organisation) states that close to 800,000 people die due to suicide every year, which translates to one person dying every 40 seconds. For each adult who died by suicide there may have been more than 20 others attempting suicide. Suicide is the second leading cause of death among 15 to 29-year-olds globally, and occurs throughout the lifespan. Read More
Mental Health Care in the National Health Service in England has always existed in the shadow of physical care in terms of funding and NHS-government health policy priorities.
Many in the past have termed it the “Cinderella” part of the NHS. This neglect has been chronicled in numerous reports over the years pointing to many problems which include chronic under funding, poor patient safety, abuses of patient rights, poor complaint handling, unnecessary restrictive care regimes, poor patient, health carer communication, and poor patient satisfaction. Read More
Suicide is a global problem that causes 800,000 deaths per year worldwide. In the United States, suicide rates rose by 25 percent in the past two decades, and suicide now kills 45,000 Americans each year, which is more than auto accidents or homicides.
Traditional methods of predicting suicide, such as questionnaires administered by doctors, are notoriously inaccurate. Hoping to save lives by predicting suicide more accurately, hospitals, governments, and internet companies are developing artificial intelligence (AI) based prediction tools. This essay analyzes the risks these systems pose to safety, privacy, and autonomy, which have been under-explored.
Two parallel tracks of AI-based suicide prediction have emerged.
The first, which I call “medical suicide prediction,” uses AI to analyze patient records. Medical suicide prediction is not yet widely used, aside from one program at the Department of Veterans Affairs (VA). Because medical suicide prediction occurs within the healthcare context, it is subject to federal laws, such as HIPAA, which protects the privacy and security of patient information, and the Federal Common Rule, which protects human research subjects.
My focus here is on the second track of AI-based suicide prediction, which I call “social suicide prediction.” Though essentially unregulated, social suicide prediction uses behavioral data mined from consumers’ digital interactions. The companies involved, which include large internet platforms such as Facebook and Twitter, are not generally subject to HIPAA’s privacy regulations, principles of medical ethics, or rules governing research on human subjects.
By John Tingle
Mental health care is a high government NHS priority. There is a real drive to rob this care area of its Cinderella image. Mental health care should not now be seen as the poor relation of acute physical care in terms of resource allocation as it has been seen in the past. However, a recent report by the Health and Social Care Regulator of England, the Care Quality Commission (CQC) seems to push this care area back into the Cinderella limelight again with the finding that sexual incidents appear commonplace on mental health wards in the NHS. The CQC is a very important health and social care regulator in England and it produces excellent reports on health care quality and patient safety. The organisation makes sure health, social care services provide people with safe, effective, compassionate, high-quality care, and they encourage care services to improve.
By John Tingle
Tragic stories of mental health care failings leading to injury and in some cases death have featured strongly in the English media in recent years. The reports reveal common threads such as poor resources, inadequate staffing levels, limited service availability, poor inter-agency cooperation, poor patient engagement, poor understanding of the Mental Capacity Act 2005 and so on. This care area seems to largely remain a Cinderella health care service provision, existing in the shadows, with the focus being predominantly on physical acute care. There are however now welcome and firm Government commitments to drive improvement into mental health care supported by a raft of promising initiatives.
When patient stories of learning disability and autism care failings are read from several reference sources a picture emerges. Care for people with learning disability and autism can be seen to share many of the patient safety and health quality problems that beset patients who are classified as being mentally ill: Read More
By John Tingle
Failings in National Health Service (NHS) care for patients with mental health problems is a worryingly persistent story in the English media. Many reports show harrowing and dramatic failings in NHS care provision for the mentally ill some of which result in avoidable deaths.The Health Service Ombudsman (HSO) represents the final stage in the NHS complaints procedure and is an independent office reporting directly to Parliament.The HSO carry’s out investigations into complaints and makes the final decisions on those that have not been resolved by the NHS in England.In a recently published report the HSO reveals reveals unjust, shocking and tragic failings in NHS care provision for patients with mental health problems.Some mental health care complaints figures are given in the report.In 2016-2017 there were 14,106 complaints made to NHS mental health trusts (hospitals) with ,65% being upheld or partly upheld by the local organisation.Case work data between 2014-15 and 2017-18 was analysed and five key themes showing persistent failings that the HSO see in complaints being made emerged from this exercise:
The HSO also points out in the report that the other common factor in the cases examined is too frequent substandard complaint handling by the NHS organisation. This adds insult to injury, compounding the impact of failings. Read More