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Showing results for tags 'Patient engagement'.
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Content ArticleAn action-oriented and radically hopeful field guide to the underground, patient-led revolution for better health and healthcare. Anyone who has fallen off the conveyer belt of mainstream health care and into the shadowy corners of illness knows what a dark place it is to land. Where is the infrastructure, the information, the guidance? What should you do next? In Rebel Health, Susannah Fox draws on twenty years of tracking the expert networks of patients, survivors, and caregivers who have come of age between the cracks of the health care system to offer a way forward. Covering everything from diabetes to ALS to Moebius Syndrome to chronic disease management, Fox taps into the wisdom of these individuals, learns their ways, and fuels the rebel alliance that is building up our collective capacity for better health. Rebel Health shows how the next wave of health innovation will come from the front lines of this patient-led revolution. Fox identifies and describes four archetypes of this revolution: seekers, networkers, solvers, and champions. Each chapter includes tips, such as picking a proxy to help you navigate the relevant online communities, or learning how to pitch new ideas to investors and partners or new treatments to the FDA. On a personal level, anyone who wants to navigate the health care maze faster will want to become a health rebel or recruit some to their team. On a systemic level, it is a competitive advantage for businesses, governments, and organizations to understand and leverage the power of connection among patients, survivors, and caregivers.
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Content ArticleNHS England’s Worry and Concern Collaborative is looking into how hospitals can make sure the worries and concerns of patients, their family and friends about a patient in hospital are taken into account by doctors, nurses and other health professionals. This webinar, hosted by the Patients Association explored: The role of the National Worry and Concern Collaborative and its seven pilot sites the experiences of both clinicians and patients how these services need to be designed and delivered.
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We all have a right to receive information about our own health in a way we can understand. There is no excuse for poor-quality, inaccessible, information that excludes people. In this blog I will consider how these needs can be met and the implications for patient safety if they are not. I have written about accessible information in the past but in this blog, I will dig deeper into some specifics, namely: Special educational needs, learning difficulties and disabilities. Visual and hearing impairments. Dominant language. If you’re interested in accessible information, I’d strongly recommend you familiarise yourself with the Accessible Information Standard – this is a standard that the NHS and adult social care have to adhere to by law when it comes to communicating with the general public. This blog will give some tips on how you can make sure you meet this standard. -
Content ArticleEmergency 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.
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News ArticleFewer people with mental illnesses would endure the trauma of being sectioned if advanced choice documents – setting out a treatment plan while they are well – were included in Mental Health Act reforms, a leading psychiatrist has said. Advanced choice documents are the only proven way to reduce the number of people detained under the Mental Health Act in England and Wales, which is one of the reforms’ core objectives, said Dr Lade Smith, the president of the Royal College of Psychiatrists. Research suggests that the use of these documents can reduce compulsory detention rates in psychiatric units, often known as sectioning, by 25%, minimising traumatic experiences for people with bipolar, schizophrenia and other psychotic illnesses. “It’s high time there was reform of the Mental Health Act because the rates of detention are increasing, especially for marginalised groups, those who are poor or from a minoritised ethnic community, especially black Caribbean … Advanced choice docs were a recommendation of the review, I don’t know why they haven’t gone through,” said Smith. Advanced choice documents are especially effective in reducing the significantly higher detention rates for black people with mental illnesses, as they can help patients feel more autonomous and reduce unconscious bias. Advanced choice documents are similar to those used in palliative care. Patients work with a healthcare professional when they are well to outline the signs that they are experiencing a manic or psychotic episode, effective treatments, and their personal preferences. This could include background information and trigger questions to help healthcare practitioners establish delusional thought patterns; medications and doses which have been effective previously; and requests to be put in hospital for their own safety, or – more unusually – that of others. Read full story Source: The Guardian, 12 February 2024
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Content ArticleThis study examines the prevalence of advanced care planning (ACP) for patients undergoing endoscopic, fluoroscopic, laparoscopic or open surgical gastrostomy tube procedures at an academic hospital in the USA. The authors found that only 10.6% of included patients had accessible ACP documents available within their electronic medical record (EMR) and that Black patients had lower rates of ACP documentation. They also highlight an association between ACP documentation and decreased hospital length of stay, with no difference in mortality. The authors recommend the expansion of ACP in perioperative settings.
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Content ArticleIn the fast-evolving realm of contemporary healthcare, surgical techniques have attained unprecedented levels of advancement, leading to substantial enhancements in patient care. However, the journey towards complete recovery extends far beyond the operating room, emphasising the importance of effective postoperative care. In this critical phase, patient partnerships play a pivotal role, ensuring a holistic and personalised approach to recovery.
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Surgeon News: Truth and compassion (December 2023)
Patient Safety Learning posted an article in Patient engagement
Surgeons' News is a magazine for surgical, dental and allied healthcare professionals. Published quarterly by the Royal College of Surgeons of Edinburgh, it features comment and opinion from leading professionals, plus reviews and reports on subjects relevant to all career levels. In the article 'Truth and compassion' (page 20-21), David Alderson considers the patient’s perspective on mistakes. -
Content Article
Patient Advocacy Leadership Collective
Patient Safety Learning posted an article in International patient safety
The Patient Advocacy Leadership Collective (PALC) is an innovative hub that provides connectivity, community resources, and tools focused on sustainable capacity building for patient advocates globally. The PALC is an excellent platform with a focus on supporting the growth, development, and leadership of patient advocacy organizations and offers a NextGen Leadership, Mentorship, and Global Health Fellows programme. -
Event6th International Symposium: sharing experience and expertise on how patients and those close to them can improve safety of care today. The Symposium will hear from researchers and patients about their experience of complex modern healthcare. It will explore how to spot that things are going wrong, witness amazing new technology and map-out the ethical and legal implications of increased control of healthcare by patients. The event is in Bangor but will also broadcast content online on the day. Key topics for the 2024 event will be: Patient safety from the patient's (and family's) perspective. Patient Activated Critical Care & the policy discussion about Martha's rule. Patients held technology - empowering or distracting? Register
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Content ArticleParticipants are vital to the success of any clinical trial. Without the data they provide, our research system would collapse. But being a clinical trial participant is not easy. Financial barriers, transport challenges, and a lack of engagement and support can leave patients feeling marginalised and disconnected. This article looks at what needs to be done to ensure diverse patients from around the world can engage with studies and remain engaged from screening until study completion, regardless of their personal circumstances.
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Content ArticleColoplast UK is a manufacturer of ostomy, continence, urology and wound care products. They commissioned the Patients Association to conduct a project to explore and recommend ways to better engage patients and carers in policymaking and the assessment of medical technologies for intimate healthcare. The Patients Association held a roundtable meeting and case study interviews with patients with intimate healthcare conditions and other stakeholders. They also conducted a survey of third-sector organisations who represent those patients and carried out desk-based research. This report summarises the findings of the project, which include that the existing mechanisms of engagement typically adopt a “patient involvement” approach where patients and carers do not have equal status as partners in the decision-making process. The report makes a number of recommendations to improve the way in which patients and their carers are engaged.
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Content ArticleIn late 2023, the Minister for Mental Health and Women’s Health Strategy, Maria Caulfield MP, asked the Patient Safety Commissioner for England to explore redress options for those who have been harmed by pelvic mesh and sodium valproate. This report sets out the outcome of this project and is designed to help the government understand the options available for providing redress to those patients harmed by pelvic mesh and valproate.
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Content ArticleA common theme of recent international inquiries is that well intentioned investigations often make things worse. Harm is compounded when we fail to listen, validate and respond to the rights and needs of all the people involved. When lengthy processes do not result in meaningful action, suffering can be exacerbated and result in further damage to wellbeing, relationships, and trust. At its worst, compounded harm produces undesirable outcomes such as a community believing an essential service is unsafe, or a clinician leaving their profession. In considering how best to respond, it is important to remember that health systems are comprised of people and relationships, as well as rules and processes. Once we think about safety as a human and relational approach, rather than one that only seeks to lessen risk and enforce regulation, we can consider how to best proceed. Whether an act is intentional or not, a dignifying approach involves working together to repair the harm involved. Restorative responses are ideal for this purpose, as Jo Wailling, Co-chair of the National Collaborative for Restorative Initiatives in Health Aotearoa New Zealand, explains in this blog on the Patient Safety Commissioner website.
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This is part of our series of Patient Safety Spotlight interviews, where we talk to people working for patient safety about their role and what motivates them. Chidiebere is passionate about increasing representation of Black people in all forms of medical literature. In this interview, he explains how lack of representation at all levels of the healthcare system leads to disparities in healthcare experiences and outcomes. He outlines the importance of speaking openly about how racial bias affects patient safety, and argues that dispelling damaging myths about particular patient groups starts with equipping people with accurate health knowledge from a young age. -
Content ArticleJoin Alan Lindemann, an obstetrics-gynecology physician, who shares his insights and real-life experiences, shedding light on the issues surrounding patient care, medical decision-making, and the role of institutions and personal connections in shaping health care outcomes. Discover how the pursuit of quality care can sometimes be obstructed by self-interest and the need to protect reputations. Alan also proposes innovative ideas to enhance transparency and public involvement in health care quality assurance.
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Event
Together making wound care work
Patient-Safety-Learning posted an event in Community Calendar
untilJoin us to hear brand new results from Mölnlycke Health Care’s latest survey, conducted as part of the “In This Together” initiative recently launched in UK, providing support and information to people living with a wound and their caregivers. “The ‘In This Together’ survey explores patients perspectives on their current experiences with wound care services in England.” There are an estimated 3.8 million people in the UK with a wound being managed by the NHS, equivalent to 7% of the UK population. The impact cannot be underestimated and can be the source of great physical pain and discomfort, as well as mental distress. With significant impact on patients and NHS resources, it is clear that wound care needs focus and attention. This webinar will be the first time that the ‘In This Together’ survey results will be published, providing the most current data of how patients feel about wound care services, with responses collected between October 2023 to January 2024. This survey builds upon the work that Mölnlycke Health Care has led over the last three years to understand where wound care currently stands, and importantly what can be done to improve it. For example, the 2022 Making Wound Care Work report looked at how the emergency measures put in place during the pandemic altered the way wound care was being delivered, and the lessons that could be learned. On the back of the Making Wound Care Work report, Mölnlycke Health Care have taken the debate into the wound care media, with articles published in the British Journal of Community Nursing and Journal of Community Nursing, in order to further publicise the report findings and continue the conversation for improving services. This webinar will cover the findings of the ‘In This Together’ survey and hear the perspectives of patient and HCP representatives on the results; this is your opportunity to join the discussion. The confirmed speakers for this webinar are: (Chair) Luxmi Dhoonmoon – London North West University Healthcare Trust, Tissue Viability Nurse Consultant Rachel Power – Chief Executive, Patients Association Leanne Atkin – Vascular Nurse Consultant, Mid Yorkshire NHS Trust Ali Hedley – Medical and Professional Affairs Manager UK at Mölnlycke Health Care Register for the webinar -
Content Article"Our #health system in the UK is in a mess. It has failed to modernise (by this I mean to become fully accountable to #patients and the public, and truly patient-led). Instead, the system has become more and more hierarchical, bureaucratic and crony ridden, mostly as a result of constant meddling and pointless reorganisations instigated by politicians. All political parties in government for the past 30 years have had a hand in this decline." This is my view? What is yours? A new Inquiry gives us all an opportunity to have our say. I am proud to have worked in and for the NHS for most of my working life; proud to have been trained in the #NHS and proud of the work being carried out by clinical teams today. Great work which has benefited patients, often not because of the leadership but despite of the leadership. I'm retired so I can say what I like. If I were working and said anything even vaguely like criticism, however constructive it was, I would be out of a job and my career would be blighted for life. I'm speaking from experience here, unfortunately. I urge everyone to respond to the consultation (link below). In your response think forensically and write it as a statement of truth. Acknowledge the successes and areas that have delivered safe and effective services. If you are being critical give examples and say if it is an opinion or back up what you say with evidence. If we work together across boundaries we can develop a truly patient-led NHS.
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Content ArticleTraditionally, recommendations regarding responding to medical errors focused mostly on whether to disclose mistakes to patients. Over time, empirical research, ethical analyses and stakeholder engagement began to inform expectations — which are now embodied in communication and resolution programmes (CRPs) — for how healthcare professionals and organisations should respond not just to errors but any time patients have been harmed by medical care (adverse events). CRPs require several steps: quickly detecting adverse events, communicating openly and empathetically with patients and families about the event, apologising and taking responsibility for errors, analysing events and redesigning processes to prevent recurrences, supporting patients and clinicians, and proactively working with patients toward reconciliation. In this modern ethical paradigm, any time harm occurs, clinicians and health care organisations are accountable for minimising suffering and promoting learning. However, implementing this ethical paradigm is challenging, especially when the harm was due to an error.
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Content ArticlePoor health literacy can inhibit patient or caregiver understanding of care instructions and threaten patient safety. This cross-sectional study from Selzer et al. of medically complex children treated at one academic hospital in Austria reveals that despite high levels of satisfaction with care, many caregivers do not understand medication management instructions at discharge. Misunderstandings were more likely to occur with higher numbers and/or new prescriptions, poor medication-related communication, and language or literacy barriers.
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EventuntilThis popular training day covers the must-dos and the grey areas around the statutory Duty of Candour, with a strong emphasis on going beyond mere compliance and delivering the duty of candour in a meaningful way for patients and families and for the staff involved and the organisation. It has been updated to directly support the successful implementation of the PSIRF guidance and the ‘Harmed Patient Pathway’. The training is delivered by Peter Walsh, the ex-Chief Executive of AvMA, who is well known for his pioneering work on the Duty of Candour, and Carolyn Cleveland, who specialises in training professionals in dealing with difficult emotions and conversations and doing so with empathy, understanding perspectives. Prices: £245 (plus vat) per person. Discounted rate for bookings of 3 or more: £220 (plus vat) per person AvMA is offering a 10% discount for delegates referred via the hub. Use code: DoC-Hub-10 Register for the training Training can also be delivered in-house at your organisation, either in person or online. Please enquire for details by emailing paulas@avma.org.uk
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Content ArticleThis document outlines the concept and content of the World Health Organization (WHO) people-centred approach to addressing antimicrobial resistance (AMR) in healthcare. It aims to address the challenges and barriers people face when accessing health services to prevent, diagnose and treat drug-resistant infections. It puts people and their needs at the centre of the AMR response and guides policy-makers in taking actions to mitigate AMR.
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Content ArticleThis resource library has been created by Health Innovation West of England to provide support materials in one location for people living with pain and professionals supporting people living with pain.
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Content ArticleThis training tracker from the Patient Experience Library helps you find courses on patient experience and patient/public involvement hosted by a range of external organisations. Each listing contains details on how to book places and contact the course providers.
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This is part of our series of Patient Safety Spotlight interviews, where we talk to people working for patient safety about their role and what motivates them. Benjamin talks about why we need a radical shift in how we view and treat people with chronic pain and how over-investigation and over-treatment compromise patient safety. He also talks about the power of communal singing for people with long-term conditions and what wild swimming has taught him about supporting people living with chronic pain.- Posted
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