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Found 85 results
  1. Content Article
    My mother, 87 years, was admitted to hospital with a suspected heart attack. At the time, she was on a strong dose of a GP-prescribed opioid (fentanyl) to manage her growing lung cancer. The Duty doctor in the hospital seemed panicked as she was so unwell and used a drug to totally reverse her morphine as they thought she had overdosed. This caused excruciating pain for most of the last 60 hours of her life. They hadn’t properly assessed the history of her prescription or asked me, her documented health advocate, about the drug or my mother’s end of life wishes. After a 2-year long traumatic j
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    Data both from interviews with researchers and reported observations by the Panel indicated that representation was a concern for researchers in both cases. Consistent with previous research, this challenge was deployed in response to contributors requesting changes to researcher plans. However, we also observed that when contributor input could be used to support research activity, it was described unequivocally as representative of ‘the patient view’. We describe this as researchers holding a confirmation logic. By contrast, contributor accounts enacted a synthesis logic, which emphasised mu
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    Key conclusions include: The Belfast Trust should have intervened earlier, but failed to do so. Systems and processes in place to assure the public about patient safety prior to November 2016 failed. The effect of numerous failures ensured problems were missed for many years and opportunities to intervene were lost. Failures not confined to Belfast Trust - information was contained in silos with communications between different organisations and management levels poor and inadequate.
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    The study was conducted at a multi-site acute NHS Trust in London, which consists of five acute sites and a range of community services. The Trust is one of the largest in the country, with an average of over 1,000 complaints per year between 2015 and 2019. Key findings of this study included: Confusion and lack of awareness of routes for raising concerns, both among patients and frontline staff. Investigative procedures structured to scrutinise the ‘validity’ of complaints, rather than focusing on improvement. Data collection systems not being set up to effectively su
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    With the SPOR ideals and vision for patient-partnered research, this special edition of the EMPOWER Award studies demonstrates the evolution in patient partnerships and innovative engagement strategies in diverse healthcare research. The EMPOWER Awards were meant to motivate teams to take their patient engagement to a new level. The breadth and depth of the 15 projects reveal the growing appetite to further develop patient engagement strategies and, more significantly, the extent and reach of patient-partnered research. This special edition represents the following topics: priority setting and
  11. Event
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    The Medicines and Healthcare products Regulatory Agency (MHRA) will be holding a joint virtual Innovative Licencing and Access Pathway (ILAP) information and update session. This event will provide an opportunity for patient groups and patient experts to receive an update on the work of the ILAP, how the MHRA involve patient and public representatives, and future developments about how the MHRA are accelerating the time to market and facilitating patient access to innovative medicines. This event is open to all patient and public representatives who are involved in the work of any of the
  12. Content Article
    If you are a patient, carer or bereaved carer, please complete the questionnaire which explores the mental health and well-being impacts of living with mesothelioma. You can find the questionnaire at the following link: https://shef.qualtrics.com/jfe/form/SV_4N4DSn9q5jsQpjE Further information about the study can be found here.
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  14. News Article
    CAP-COVID are conducting essential research on how the COVID-19 pandemic affects pregnant women and their babies. If you are a pregnant woman at any stage of pregnancy, you can take part in the study. This includes whether you have just had a positive pregnancy test (even if you are unsure what to do about your pregnancy), whether you are in the middle of pregnancy, or you are about to have your baby. Take part
  15. Content Article
    Findings The men spoken to had been struggling for years with poor mental health and suicidal thoughts and feelings. Despite experiencing many well-known risk factors for this group, many opportunities to help them at critical points before they reached crisis were missed. Importantly, the men spoken to didn't see community-based support services, focused on fostering connection and community, as relevant to them before they reached crisis. "There exists a vacuum of responsibility in which opportunities to engage and support these men, before they hit crisis point, were neglecte
  16. News Article
    The NHS is spending millions of pounds encouraging patients to give feedback but the information gained is not being used effectively to improve services, experts have warned. Widespread collection of patient comments is often “disjointed and standalone” from efforts to improve the quality of care, according to a study by the National Institute for Health Research (NIHR). Nine separate studies of how hospitals collect and use feedback were analysed. They showed that while thousands of patients give hospitals their comments, their reports are often reduced to simple numbers – and in
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    Bella is a Wellcome Trust Engagement Fellow and Director of Public Programmes at Manchester University NHS Trust. She is passionate about the democratisation of science; her Fellowship explores how public engagement with scientific research can act as a catalyst for social change.
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