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Found 182 results
  1. News Article
    Female health monitoring apps are putting women at risk by "coercing" them into disclosing - and then poorly handling - highly sensitive data, according to new research. The study examined the privacy policies and data safety labels of 20 of the most popular of these kind of apps, which are commonly used to help women conceive. It found a host of poor data-management practices, including some apps not having a delete function, even for highly personal information such as menstrual cycles and miscarriages. Its authors say it is the most extensive evaluation its kind completed to date. They say the apps are used by hundreds of millions of people. The BBC has contacted a number of app providers - none have responded to a request for comment. "While female health apps are vital to the management of women’s health worldwide, their benefits are currently being undermined by privacy and safety issues," the lead author of the study, Dr Ruba Abu-Salma, from King's College London, told the BBC. Other key findings from the study include: 35% of apps claimed not to share personal data with third parties but contradicted this in their privacy policies 50% assured users that health data would not be shared with advertisers, but were ambiguous about other data collected 45% of privacy policies denied responsibility for third-party practices, despite claiming to vet them. Female-focused technology has boomed in recent years, with the market expected to exceed $75 billion by 2025. But Lisa Malki, another of the study's authors, said the industry needed to get better at protecting the women whose data it was using. Read full article on the BBC here.
  2. News Article
    Bereaved families who lost loved ones in the contaminated blood scandal have claimed their relatives were being “used for research” after discovering historic notes in medical records. It is claimed that some patients being treated for the blood clotting disorder haemophilia in the 1970s and 1980s were given blood plasma treatment which doctors knew might be contaminated and infect them with hepatitis. They wanted to study the links between the haemophilia treatment Factor VIII and the risk of infection, but a number of families have claimed their loved ones were enrolled in these studies without their knowledge or consent. The Factor 8 campaign group alleges that instead of stopping treatment, clinicians lobbied to continue trials, even after identifying the association between hepatitis and the treatment. Jason Evans, director of the campaign group, found notes alluding to the research in his father’s medical records. He has since found other families who have discovered the same notes in the records of their loved ones. Mr Evans, whose father died in 1993 after being infected with both HIV and hepatitis C during the course of his treatment for haemophilia, said: “It is appalling that hundreds of people with haemophilia across the country were knowingly infected with lethal viruses under the guise of scientific research. These secret experiments, conducted without consent, show individuals were treated as mere test subjects, not human beings." Read full story Source: Independent, 9 May 2024
  3. Content Article
    Lots of helpful information about health and medical science is available on the internet, often found via search engines and social media. However, some online health information is false and misleading—this is called health misinformation. Health misinformation can be harmful and can be hard to recognise, as the information may appear to come from an official or safe source. This article by US-based doctor Kelly Johnson-Arbor provides advice on how to recognise health misinformation, where misinformation comes from and why it can be harmful. The author goes on to explain ways to look for reliable health information.
  4. News Article
    The UK’s data protection regulator has published new guidance for health and social care organisations it says will help them be more transparent about how personal information is being used. The Information Commissioner’s Office (ICO) said the new guidance would provide regulatory certainty to organisations on how they should keep people properly informed as technology is increasingly used to deliver care and carry out research. The regulator said focus on the issue was needed as the health and social care sector routinely handles sensitive information about the most intimate aspects of peoples’ health, and that under data protection law, people have a right to know what is happening to their personal information. Being transparent is essential to building public trust in health and social care services Anne Russell, head of regulatory policy projects at the ICO, said the ever-increasing use of technology meant personal data was more important than ever, and so therefore was more transparency. “Being transparent is essential to building public trust in health and social care services,” she said. “If people clearly understand how and why their personal information is being used, they are likely to feel empowered to share their health information to both access care and support initiatives such as medical research. “As new technologies are developed and deployed in the health sector, our personal information is becoming more important than ever to boost the efficiency and public benefit of these systems. “With this bespoke guidance, we want to support health and social care organisations by improving their understanding of effective transparency, ensuring that they are clear, open and honest with everyone whose personal information is being used.” Read full story Source: The Independent, 15 April 2024
  5. Content Article
    The Information Commissioner’s Office (ICO) is supporting health and social care organisations to ensure they are being transparent with people about how their personal information is being used. The UK data protection regulator has today published new guidance to provide regulatory certainty on how these organisations should keep people properly informed. The health and social care sectors routinely handle sensitive information about the most intimate aspects of someone’s health, which is provided in confidence to trusted practitioners. Under data protection law, people have a right to know what is happening to their personal information, which is particularly important when accessing vital services. The guidance will help organisations to understand the definition of transparency and assess appropriate levels of transparency, as well as providing practical steps to developing effective transparency information.
  6. Community Post
    *Trigger warning. This post includes personal gynaecological experiences of a traumatic nature. What is your experience of having a hysteroscopy? We would like to hear - good or bad so that we can help campaign for safer, harm free care. You can read Patient Safety Learning's blog about improving hysteroscopy safety here. You'll need to be a hub member to comment below, it's quick and easy to do. You can sign up here.
  7. Event
    This course will offer an overview of the law relating to medical treatment decisions, both children and adults, and both for patients able to make a decision for themselves, and where best interests decisions must be made for those who cannot, and how to tell the difference. We will also look at how, and when, it may be necessary to involve the court to resolve disputes and – better – how to avoid disputes altogether. Decisions about medical treatment can be about life and death, such as withdrawal of treatment or (not) providing CPR. Or about quality of life, liberty and independence, which can be just as important. But the legal (and ethical) framework around these decisions is often misunderstood, leading to distress and disputes at the very worst of times, as we have seen in a few very high-profile cases. It can also cause uncertainty and doubt in clinicians, where the law is misunderstood as a stick to beat them with, rather than a shield to protect their reasonable decision-making. We will cover whether a patient should always get what they want, or does “doctor know best”? When a patient cannot make a decision for themselves, who gets to decide, and how should these decisions be made? What is the role of so-called “next of kin” (and did you know that there’s actually no such thing)? Can parents insist on treatment for a child when doctors think it futile? How are disputes in this context resolved and, better yet, how are they avoided? Throughout, we will talk in particular about the importance of good communication, and managing expectations, and how to ensure that clinicians are doing the right thing for the patient, as well as avoiding getting sued. Key learning objectives: To understand and apply in practice the fundamental legal framework around decisions about medical treatment, including: Rationing and resource allocation The limits of choice and autonomy The relationship between law and ethics The importance of good communication, and how to not get sued The law on consent Mental capacity and best interests decision for adults Decisions about children – Gillick competence, parental responsibility and disputes Restraint and deprivation of liberty Going to court Register
  8. Content Article
    The Patients Association has been working with the Health and Care Professions Council (HCPC) to understand the impact the English language proficiency of health and care professionals has on patient and carer experiences. The HPCP is proposing changes to its English language proficiency requirements for applicants and this blog outlines key issues that were raised in an online focus group with patients, including: The impact of English language proficiency on patient experience Creating a fair system Partnering with patients and carers
  9. Content Article
    Incorporating parental values in complex medical decisions for young children is important but challenging. This review in The Lancet Child & Adolescent Health explores what it means to incorporate parental values in complex paediatric and perinatal decisions. It provides a narrative overview of the paediatric, ethics and medical decision-making literature, focusing on value-based and ethically complex decisions for children who are too young to express their own preferences. 
  10. Content Article
    Emergency general surgery (EGS) involves care and treatment of a patient's often previously unknown disease in an unplanned interaction with the healthcare system. This leads to challenges in collecting and interpreting patient reported outcome measures (PROMs). This study in the American Journal of Surgery aimed to capture the peri-operative experiences of 30 patients at 6 to 12 months after their treatment. The authors found that: two-thirds reported feeling no choice but to pursue emergency surgery with many reporting exclusion from decision-making. Females reported these themes more commonly. patients with minor complications less frequently reported trust in their team and discussed communication issues and delays in care. patients with major complications more frequently reported confidence in their team and gratefulness, but also communication limitations. patients not admitted to the ICU more frequently discussed good communication and expeditious treatment.
  11. Content Article
    Patients for safer nuclear medicine (PSNM) is a coalition of patient advocacy groups and corporate partners demanding that patients get the information they need about extravasations so their diseases are accurately diagnosed and treated. Pam Kohl is a metastatic breast cancer patient whose length of life depends on the accuracy of her nuclear scans. During a recent scan, she was extravasated. “I felt something burn,” she says. “I really felt something wasn’t right.” Watch Pam's story and find out more about PSNM.
  12. Content Article
    This study published in BMJ Quality & Safety identified factors acting as barriers or enablers to the process of healthcare consent for people with intellectual disability and to understand how to make this process equitable and accessible. The study found that multiple reasons contribute to poor consent practices for people with intellectual disability in current health systems. Recommendations include addressing health professionals’ attitudes and lack of education in informed consent with clinician training, the co-production of accessible information resources and further inclusive research into informed consent for people with intellectual disability. Related reading on the hub: Accessible patient information: a key element of informed consent
  13. Content Article
    In this blog, Sexual and Reproductive Health Consultant, Neda Taghinejadi tells us about the coil fitting service she is part of in Oxfordshire. Neda explains how the service has integrated a number of tools, including a triage system to identify more complex cases, to help support a safe and quality service. 
  14. Content Article
    The following account has been shared with Patient Safety Learning anonymously. We’d like to thank the patient for to sharing their experience to help raise awareness of the patient safety issues surrounding outpatient hysteroscopy care.
  15. Content Article
    Patient safety and healthcare information are inextricably linked. But how can you be certain the content you’ve produced, or information you have received as a patient, is indeed ‘safe’? The sheer volume of information available is staggering – be it a leaflet about skin cancer, a poster about vaccines in your GP waiting room, a YouTube video about healthy living or a consent form for a surgical procedure. The list goes on and on and, without professional review, there really is no knowing how safe that information is. If you work in the healthcare sector, and especially if you work in the creation of healthcare information, you will probably be familiar with the Patient Information Forum and their ‘PIF TICK’. The PIF TICK provides reassurance that what is being given to patients is: safe reliable accurate accessible.   At EIDO Healthcare, we were awarded our first PIF TICK in October 2020 and have had it successfully renewed every year since. In this blog, I will talk about my experience of receiving and maintaining a PIF TICK for our library of information leaflets for patients needing surgery.
  16. Content Article
    The ethnicity data gap pertains to three major challenges to address ethnic health inequality: Under-representation of ethnic minorities in research Poor data quality on ethnicity Ethnicity data not being meaningfully analysed. These challenges are especially relevant for research involving under-served migrant populations in the UK. This study in BMC Public Health aimed to review how ethnicity is captured, reported, analysed and theorised within policy-relevant research on ethnic health inequities. The authors concluded that the multi-dimensional nature of ethnicity is not currently reflected in UK health research studies, where ethnicity is often aggregated and analysed without justification. Researchers should communicate clearly how ethnicity is operationalised for their study, with appropriate justification for clustering and analysis that is meaningfully theorised.
  17. Content Article
    In this article, published by Med Page Today, clinical trials are the cornerstone of evidence-based medicine authors argue that: "All trial results - positive, negative, and neutral - must be made publicly available to allow for transparent decision-making by patients, physicians, and regulators. Without complete data, the evidence gets distorted: harms are downplayed, and benefits are overstated."
  18. Content Article
    The NHS’s deal with the US tech company Palantir raises privacy concerns, but a unified database could be a medical gamechanger writes Martha Gill in an article for the Observer. Governments have been trying to stitch together our patchwork system for decades. Billions have been lost in these attempts. However, they always run up against the same problem: people just don’t want to share their medical data, even when assured it will be anonymised. When the government aimed to build a collection of anonymous GP health records, around a million patients opted out. The latest of these attempts has closed a loophole: patients cannot now opt out. But this has enraged civil liberties groups, which are concerned about the company chosen to merge, clean and provide tools for sorting through the data.
  19. News Article
    A surgeon has said it would have been "cruel and unacceptable" to have woken up a patient to get consent for a mesh operation. Anthony Dixon is accused of failing to provide adequate clinical care to five patients at Southmead Hospital and the private Spire Hospital in Bristol. He had pioneered the use of artificial mesh to lift prolapsed bowels. Mr Dixon appeared at a Medical Practitioners Tribunal Service (MPTS) hearing in Manchester on Thursday. He faces charges of performing procedures that were not "clinically indicated", failing to carry out tests and investigations and failing to obtain consent from patients. It followed complaints many had suffered pain or trauma after having pelvic floor surgery using artificial mesh, a technique known as laparoscopic ventral mesh rectopexy (LVMR). Giving evidence, he was asked why he did not consider waking up one female patient who underwent an LVMR, to get her consent to surgery. Mr Dixon said it would have meant giving her more drugs for pain relief and could have "multiplied the risks" to her. He is also accused of failing to advise patients about the risks of procedures, failing to discuss non-surgical options and dismissing patients' concerns when they experienced pain or other symptoms following surgery. Read full story Source: BBC News, 23 November 2023 Related reading on the hub: Woman’s mesh consent form was changed after signing – how can patients be better protected?
  20. Content Article
    Yvette Greenway-Mansfield experienced complications relating to the vaginal mesh that was used to treat a uterine prolapse. Those complications were not listed on the consent form she signed. Fortunately, she kept her copy and was able to prove this. Yvette has recently been awarded £1 million because it was found that her form had been doctored after she had signed it.   Her successful medical negligence claim was also based on the fact that alternative treatment options were not considered when they should have been. These alternatives came with fewer risks, and it was agreed that they would actually have been more suitable in her case.  In this blog, I reflect on the levels of harm caused to the patient and how digital consent forms could help protect others. 
  21. Content Article
    Paula Goss had surgery to implant rectopexy and vaginal meshes which left her with severe pain and other serious complications. In this blog, Paula talks about why she set up Rectopexy Mesh Victims and Support to campaign for adequate treatment, redress and justice for people injured by surgical mesh. She outlines the need for greater awareness of mesh injuries amongst both healthcare professionals and the public and talks about what still needs to be done to enable people to access the treatment and support they need.
  22. News Article
    A group of 67 women from Greenland are seeking compensation from the Danish government over a campaign of involuntary birth control in the 1960s. At least 4,500 women, some of them teenagers, were fitted with coils under a programme intended to limit birth rates among the indigenous population. An inquiry is due to conclude in 2025, but the women, some of whom are in their 70s, want compensation now. They are seeking 300,000 kroner (£34,880; $42,150) each. Records from the national archives showed that, between 1966 and 1970 alone, intrauterine devices (IUDs) were fitted into the women, some as young as 13, without their knowledge or consent. A commission set up by the Danish and Greenlandic governments to investigate the programme is not due to deliver its findings until May 2025. "We don't want to wait for the results of the inquiry," said psychologist Naja Lyberth, who initiated the compensation claim. "We are getting older. The oldest of us, who had IUDs inserted in the 1960s, were born in the 1940s and are approaching 80. We want to act now." Ms Lyberth said that, in some cases, the devices fitted had been too big for the girls' bodies, causing serious health complications or even infertility, while in others the women had been unaware of the devices until they were discovered recently by gynaecologists. She accused the Danish government of the time of wanting to control the size of Greenland's population in order to save money on welfare. "It's already 100% clear that the government has broken the law by violating our human rights and causing us serious harm," she said. Read full story Source: BBC News, 3 October 2023
  23. Content Article
    The relationship between patients and their data is deeply personal. This report by The Patients Association shows that patients recognise that the potential for data use to improve care is huge, and that there is widespread support for realising this potential if patients’ concerns are acknowledged and addressed. It proposes the development of a data pact to outline the relationship between patients, their data and the health system. This could be a useful first step in informing patients about how data is used in the health and care system and a starting point in improving patient confidence. To do this, the pact needs to acknowledge that the system is not perfect, as one part of building public confidence is acknowledging the reasons why at present, confidence may be low.
  24. News Article
    A man plans to sue a nursing home because, he says, during the pandemic his mother was put on end-of-life care without her family being told. Antonia Stowell, 87, did not have the mental capacity to consent because she had dementia, say the family's lawyers. Her son, Tony Stowell, said if end-of-life care had been discussed, he would not have agreed to it. Rose Villa nursing home in Hull says all proper process in Mrs Stowell's care was followed with precision. As a prelude to legal action, Mr Stowell's lawyers have obtained his mother's hospital records which, they say, show she was diagnosed with suspected pneumonia while living in the home. End-of-life drugs were then prescribed and ordered by medical professionals. In a statement, Rose Villa said: "We believe that our dedicated and professional team provided Antonia with the very best care under the direction of her GP and medical team, and all proper process in the delivery of this care was followed with precision." Mr Stowell's lawyers, Gulbenkian Andonian solicitors, said his mother's hospital records reveal the decision to put her on end-of-life care was made two days before the family was told. In their letter to the home announcing the planned legal action, they said Mrs Stowell could have had "48 additional hours on a ventilator with treatment… with the necessary implication that Antonia Stowell could still be with us today or at least survived". The lawyer dealing with the case, Fadi Farhat, told the BBC: "As a matter of law, there is a presumption in favour of treatment which would preserve life and prolong life, irrespective of one's age or condition. "Therefore to deviate from that presumption means a patient, or family members, should be consulted as soon as that decision is made or contemplated." He adds: "What is particularly concerning for me is this case occurred at the height of the pandemic. That should worry everybody because it demonstrates that rights can be suspended in times of crisis, when the very purpose of legal rights is to protect us during times of crisis." Read full story Source: BBC News, 9 January 2023
  25. News Article
    The high-profile Australian neurosurgeon Charlie Teo admits making an error by going “too far” and damaging a patient, but maintains she was told of the risks. The doctor on Monday appeared at a medical disciplinary hearing to explain how two women patients ended up with catastrophic brain injuries. Teo also defended allegations that he acted inappropriately by slapping a patient in an attempt to rouse her after surgery, contrasting it with Will Smith’s notorious slap of Chris Rock at the Academy Awards last year. “It wakes them up and it wakes them up pretty quickly. And I will continue to do it.” Charlie Teo tells inquiry he ‘did the wrong thing’ in surgery that left patient in vegetative state One of the issues the panel of legal and medical experts is considering is whether the women and their families were adequately informed of the risks of surgery. Both women had terminal brain tumours and had been given from weeks to months to live. They were left in essentially vegetative states after the surgeries and died soon after. “We were told he could give us more time,” one of the husbands said, according to court documents. “There was never any information about not coming out of it". Read full story Source: The Guardian, 27 March 2023
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