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Showing results for tags 'Patient engagement'.
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Content ArticleThis article tells the story of how the This Is My Story (TIMS) initiative developed at John Hopkins Medicine, and how it is giving care teams a humanising window into the lives of patients who can’t speak for themselves. Initiated by Chaplain Elizabeth Tracey, who saw the toll not being able to communicate with intubated patients was having on healthcare workers during the first wave of the Covid-19 pandemic, TIMS provides healthcare teams with a short audio recording about each patient. The patient's family shares details about their loved one, such as information on hobbies, personal interests and the patient's career. Staff have reported the TIMS recordings having a big impact on how they view their patients, and the scheme has been rolled out across John Hopkins services.
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Content ArticleThis cross-sectional study in JAMA Network aimed to assess whether a large language model can transform discharge summaries into a format that is more readable and understandable for patients. The findings suggest that a large language model could be used to translate discharge summaries into patient-friendly language and format, but implementation will require improvements in accuracy, completeness and safety.
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EventuntilFor the first time, Making Families Count are collaborating with SOFT UK, a charity that supports families caring for children with a rare and life-limiting genetic condition. Speakers will be drawn from the families and healthcare professionals who are part of the SOFT UK community, sharing their stories and lived experiences and giving suggestions that may help you support the families you work with. The Department of Health UK Strategy for Rare Diseases (DHSSPS 2020) estimates that rare diseases, including genetic conditions, affect the lives of over 3 million people in the UK. Of these, a significant proportion are children with genetic life-limiting and life-threatening conditions. The parents of many of these children often talk of the challenges of parenting a disabled child and their sometimes stressful interaction with healthcare professionals. This webinar will give you greater insight into the lived experience of families caring for a child with complex needs. We will explore their day-to-day challenges in dealing with the anxiety of hospital admissions, difficulties of communicating with and being heard by healthcare professionals, the challenge of balancing the needs of the whole family, and the stressful burden upon parents over time. This webinar is for… Paediatric nurses Paediatric / Community nursing teams Complex Care Team (Paediatrics) Respite Care (Paediatrics) Play Specialists Hospital at Home teams (Paediatrics) Paediatric / Children’s Occupational Therapists Paediatric / Children’s Physiotherapists SALT Child Development Centre staff Paediatric Outreach Teams Presenters: Dr Alison Pearson, a post-doctoral research fellow in education, well-being, and resilience and mum to 13-year-old Isabel, who has full Edwards’ syndrome. She draws upon her research and her family’s lived experience to talk about the challenges of hospital acute admissions for Isabel and the impact on her whole family. Una McFaddyn, a recently retired Consultant Paediatrician with a special interest in respiratory and neonatal paediatrics. Una has a long-standing interest in children’s rights and has worked with various projects involving children and parents as partners in care. She will provide the perspective of a healthcare professional on supporting families and their children. You will also hear other voices from the SOFT UK community of families via several films and audio clips, bringing to life the experience of a wide range of parents who care for children with complex care needs. Learning outcomes: At the end of this webinar, you will have an appreciation of the challenges facing parents who care for a child with complex needs – specifically the anxiety of acute admissions to hospital, communication issues with healthcare staff, and the wider impact upon families. You will be able to use that deeper understanding to shape the care and support you can offer these families in your own practice. Register
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Content ArticleEnthusiasm has grown about using patients’ narratives—stories about care experiences in patients’ own words—to advance organisations’ learning about the care that they deliver and how to improve it, but studies confirming association have not been published. This study assessed whether primary care clinics that frequently share patients’ narratives with their staff have higher patient experience survey scores. It found that sharing narratives with staff frequently is associated with better patient experience survey scores, conditional on confidence in knowledge. Frequently sharing useful patient narratives should be encouraged as an organizational improvement strategy. However, organisations need to address how narrative feedback interacts with their staff’s confidence to realize higher experience scores across domains.
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Content ArticleThis article in the Pharmaceutical Journal outlines best practice principles and practical advice for structuring antimicrobial reviews and effective stewardship practices. It aims to equip pharmacists to: Understand the role of essential antimicrobial stewardship tools and frameworks to improve antibiotic prescribing; Structure an antimicrobial review effectively, covering all relevant details; Personalise the antimicrobial review to ensure patient-centred care and effective antimicrobial stewardship practices; Develop skills for effective antimicrobial review and stewardship practices to mitigate antimicrobial resistance threat.
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Content ArticleThis article looks at US study showing that the simple act of a doctor sitting in a chair during hospital bedside discussions improves the experience for both doctors and patients. The research team examined whether educating internal medicine residents on the value of sitting and adding a wall-mounted folding chair in plain sight to hospital rooms would motivate doctors to use chairs. The study also measured the impact of whether this physician behaviour impacted patient perceptions. The results showed that: Education alone improved sitting frequency to 15%, but adding dedicated chairs for the clinicians in addition to any patient or visitor chairs improved sitting to 45%. In units where residents were given only education on the value of sitting, patients reported 49% of the time residents always spent enough time by the bedside with them, compared to 73% when a chair was available. In units with education only, 67% of the time residents always checked to ensure the patient understood everything, compared to 87% when a chair was present.
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Content Article
In this blog, Patient Safety Partners Anne Rouse and Chris Wardley and Patient Safety Learning’s Chief Executive, Helen Hughes, examine the results of a recent survey of Patient Safety Partners (PSPs). The results reveal significant variation in how the PSP role is being implemented in NHS organisations in England and highlight frustration, barriers and successes that people in the role are experiencing.- Posted
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Content ArticleThis cohort study examined whether sociodemographic characteristics affected patient access to and use of patient health care portals during the Covid-19 pandemic. The authors found significant disparities in portal use by sex, age, multimorbidity and health literacy were found. While disparities by sex and age decreased and were no longer statistically significant by 2021, disparities by multimorbidity remained consistent throughout the pandemic and disparities by health literacy were exacerbated.
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Content ArticleThe 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
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Content ArticleThe Falls and Fragility Fractures Audit Programme (FFFAP) is looking to recruit new members to their award-winning Patient and Carer Panel. FFFAP is a national clinical audit run by the Royal College of Physicians (RCP) and commissioned by the Healthcare Quality Improvement Partnership on behalf of NHS England and the Welsh Government. Their work aims to improve the care that patients with fragility fractures receive in hospital and after discharge and to reduce inpatient falls.
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News Article
Worst-off find it harder than well-off to access NHS care, survey finds
Patient Safety Learning posted a news article in News
Poorer people find it much harder to access NHS care than the well-off and have a worse experience when they do get it, research by the health service’s consumer watchdog has found. Those on the lowest incomes have much more difficulty getting a GP appointment, dental care or help with mental health problems, according to a survey by Healthwatch England. They are also more likely to feel they are not listened to by a health professional and not involved in key decisions about their care compared with those who are financially comfortable. The links between poverty and ill-health are well known, but the Healthwatch findings show that the worse-off also face the disadvantage what the watchdog called barriers to obtaining healthcare when they need it. The findings have prompted fears that the NHS is too often a “two-tier service” with access closely related to wealth, and calls for it to do more to make services more accessible to everyone. Healthwatch’s survey of 2,018 people aged 16 and over in England, which was a representative sample of the population, found that: 42% of those who described their financial situation as “really struggling” said they had trouble getting to see a GP, double the 21% of those who were “very comfortable”. 38% of the worst-off found it hard to get NHS dental care, compared with 20% of the better-off. 28% of the very poor had difficulty accessing mental health treatment, whereas only 9% of the very comfortable did so. Read full story Source: The Guardian, 4 March 2024 -
Content ArticleUsing experiences of care from over 10 million people collected over the past ten years, Healthwatch England presents a bold vision for the NHS in 2030. In a new report, Healthwatch outlines what they think the NHS should be in six years and how it can get there. The vision calls for a focus on three key themes: Making the NHS easier to access and navigate. Tackling health inequalities. Building a patient-centred culture.
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Content ArticleThis ethnographic study looked at five local Healthwatch organisations to determine the extent to which they have fulfilled their intended role of fostering co-creation in health and social care in England. The study results demonstrate clear activity and some tangible impacts that have been achieved towards the aim of cocreation. However, the authors also highlight that the positioning of these organisations as 'collaborative insiders' in local governance systems has limited the issues that have been prioritised in co-creative activities. This analysis suggests that the increasing promotion of ideas of co-production in English health and social care has resulted in fertile grounds for localised co-creation. However, the authors highlight that the areas Healthwatch focused on were ones where other agencies in the system recognised their limitations, and where they knew they needed help to avoid socially undesirable outcomes. As a result, the approaches taken to co-creation by Healthwatch were largely conservative and constrained. The authors state that, "Even though they were not explicitly ruled out-of-bounds, Healthwatch officers knew that to be considered legitimate and serious players in the governance of health and social care, they needed to be selective about which issues they brought to the table."
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Content Article
This month marks two years of the hub's Patient Safety Spotlight interview series. Patient Safety Learning's Content and Engagement Manager Lotty Tizzard reflects on the value of sharing personal insights and identifies the key patient safety themes that interviewees have highlighted over the past two years. -
Content Article
That’s the way to do it! (19 February 2024)
Patient Safety Learning posted an article in Regulatory issues
On 8 February 2024, Ombudsman, Rob Behrens and Patient Safety Commissioner, Henrietta Hughes, wrote a joint letter to government. Both have regulatory roles to play in improving patient safety and both are struggling to gain headway with the recalcitrant NHS. Supposedly independent of government, this correspondence shows they are in fact totally dependent on government, due to their limited powers writes Della Reynolds in this blog. -
Content ArticleWhile some patients fully embrace access to test results as soon as they become available, those who may be less informed or receiving results for the first time may find reading results without the guidance of a doctor or oncologist to be fear-inducing and anxiety provoking. The intention of this poster from Tambre Leighn, presented at AACR2023, is to raise awareness and generate conversations about gaps in the process that create barriers and concerns along with potential strategies to improve the overall experience for patients, caregivers and their doctors without interfering with those patients who want to know without delay.
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Content ArticleOmbudsman, Rob Behrens and Patient Safety Commissioner, Henrietta Hughes, have written a letter to the Government sharing their joint concerns regarding what they see as the confrontational culture created by the complaints process in some areas of the NHS that undermines patient safety.
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Content ArticleThis animation aims to help staff and employers across health and social care understand Oliver's Training and why it is so vitally important. It was co-designed and co-produced with autistic people and people with a learning disability. Oliver McGowan died aged 18 in 2017 after being given antipsychotic medication to which he had a fatal reaction. He was given the medication despite his own and his family's assertions that he could not be given antipsychotics, and the fact that this was recorded in his medical records. The animation tells his story and highlights the increased risks facing people with learning disabilities and autism when accessing healthcare.
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Content ArticlePatient engagement technologies (PETs) are tools used to guide patients through the perioperative period. This study in the American Journal of Surgery aimed to investigate the levels of patient engagement with PETs through the perioperative period and its impact on clinical outcomes. The authors found that use of PETs improves patient outcomes and experiences in the perioperative period. Patients who engage more frequently with PETs have shorter length of stay (LOS) with lower readmission and post-operative complication rates.
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Content ArticleIn this letter to Health Secretary Steve Brine MP, members of the All Party Parliamentary Group (APPG) on Pandemic Response and Recovery raise serious concerns about the approach of the Medicines and Healthcare Products Regulatory Agency (MHRA) to patient safety. They outline problems within the MHRA that continue to put patients at serious risk of harm. The letter also highlights the role of the Independent Medicines and Medical Devices Safety Review (IMMDS), in its thorough investigation of Primodos, sodium valproate and pelvic mesh in bringing some of these concerns to the fore. It points to recent evidence presented to the APPG that indicates that the MHRA is at the heart of wider endemic failings, with issues uncovered so far being "the tip of a sizeable iceberg of failure." The letter outlines concerns about the following areas: The Yellow Card Scheme Conflicts of interest and transparency History of regulatory failures in the MHRA It calls on the Health and Social Care Select Committee to investigate these issues and make recommendations to the government on: legislative changes as to who is obligated to report adverse drug reactions. funding changes to the MHRA. separation of regulatory approval duties from post marketing pharmacovigilance. more inclusion of patients. greater transparency across the board. proper enforcement of Part 14 of the Human Medicines Regulations 2012.
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Content ArticleAs the Cumberlege Review and Paterson Inquiry made clear, having accurate and timely data on treatments and outcomes is critical to patient safety. NHS England is working to strengthen this data by implementing a central database to collect key details of implantable devices at the time of operation. The new Outcomes and Registry Platform will bring existing registries together for the first time and introduce new registries. In a blog for the Patient Safety Commissioner website, Scott Pryde, Programme Director for NHS England’s Outcomes and Registries Programme, and Katherine Wilson, Clinical Steering Group Chair of the programme, discuss the new National Registry of Hearing Implants, a registry specifically for cochlear implants. They highlight the importance of collaboration between patients, clinicians, regulators and medical device manufacturers.
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News ArticleThe head of the NHS has today announced the rollout of ‘Martha’s Rule’ in hospitals across England from April, enabling patients and families to seek an urgent review if their condition deteriorates. The patient safety initiative is set to be rolled out to at least 100 NHS sites and will give patients and their families round-the-clock access to a rapid review from an independent critical care team if they are worried about their or a loved one’s condition. This escalation process will be available 24/7 to patients, families and NHS staff, and will be advertised throughout hospitals, making it quickly and easily accessible. NHS chief Amanda Pritchard said the programme had the potential to “save many lives in the future” and thanked Martha’s family for their important campaigning and collaboration to help the NHS improve the care of patients experiencing acute deterioration. Thirteen-year-old Martha Mills died from sepsis at King’s College Hospital, London, in 2021, due to a failure to escalate her to intensive care and after her family’s concerns about her deteriorating condition were not responded to promptly. Extensive campaigning by her parents Merope and Paul, supported by the cross-party think tank Demos, has seen widespread support for a single system that allows patients or their families to trigger an urgent clinical review from a different team in the hospital if the patient’s condition is rapidly worsening and they feel they are not getting the care they need. Merope Mills and Paul Laity, Martha’s parents, said: “We are pleased that the implementation of Martha’s Rule will begin in April. We want it to be in place as quickly and as widely as possible, to prevent what happened to our daughter from happening to other patients in hospital. “We believe Martha’s Rule will save lives. In cases of deterioration, families and carers by the bedside can be aware of changes busy clinicians can’t; their knowledge should be recognised as a resource. We also look to Martha’s Rule to alter medical culture: to give patients a little more power, to encourage listening on the part of medical professionals, and to normalise the idea that even the grandest of doctors should welcome being challenged. We call on all NHS clinicians to back the initiative: we know that the large majority do listen, are open with patients and never complacent – but Martha’s doctors worked in a different culture, so some situations need to change. “Our daughter was quite something: fun and determined, with a vast appetite for life and so many plans and ambitions – we’ll never know what she would have achieved with all her talents. Hers was a preventable death, but Martha’s Rule will mean that she didn’t die completely in vain.” Read full story Source: NHS England, 21 February 2024
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Content ArticleOn the 7 February 2024, the Patient Safety Commissioner for England published a report considering options for redress for those who have been harmed by two of the interventions covered by the Independent Medicines and Medical Devices Safety Review: sodium valproate and pelvic mesh. In this blog, Patient Safety Learning sets out the background to this report, outlines responses from patient groups and campaigners, and reflects on how this work will be taken forward.
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Community Post
Expert patients and repeat medications
Clive Flashman posted a topic in GP and primary care
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It's rare that I post personal information of any kind on a website such as this, but this really irked me so felt it was worth sharing. Context: I've been an Asthma sufferer since the age of 3 years old. I know exactly how to manage my condition having had it for over 50 years, and have always used a blue ventolin inhaler as and when necessary (perhaps once every 2-3 months). I have not had any serious issues with my Asthma for at least 20 years, and then only in Hayfever season. Issue: I only renew my inhaler when it expires, every 2 years or so. Therefore it is not listed on my repeat medications list. My most recent one had just run out, so I needed a replacement. Action: I emailed the GP's website as I knew I was meant to, and received an automated email back saying that I would receive a response within 5 working days. So far so good. Response: I received another email response 2 days later (pretty good!) saying that the GP would have to call me to run through why I needed a new inhaler. GP call: The GP rang on the set day and within the allocated time window and started asking me how often I used the inhaler, for what, and did I really need that or the preventative one (which I've had before). At the end of our 10 minute call, she agreed that I just needed a replacement blue ventolin inhaler, as I had asked for in the first place. What a waste of the GP's time, and mine!! It made me think that it would be a helpful thing if certain patients with decades of experience in managing their condition(s) in a very stable way could be classed as 'expert patients' on their GP record. This could save a huge amount of wasted time on both sides!! This blog post first appeared on Linkedin on 30 October 2022. I will post some of the responses to it below for added insight.- Posted
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Content ArticleRisks and statistics are an essential part of patient information. What is a person’s risk of developing a particular condition in their lifetime, or of having a certain symptom if they have that condition? What are the risk factors for a disease, and can people change these? What is the chance of a treatment or procedure working? And what is the risk of getting the different side-effects and complications that can come with it? Many patients are unable to comprehend basic statistics, never mind navigate their way through the reams of data that may come with health information to compare treatment options. As information producers, our job is to make sure we can guide patients through the minefield of data and figures to help them feel confident in making their own decisions. This guide from the Patient Information Forum highlights a range of approaches and tools for unbiased communication. This resource covers the following topics: illustrating risk, perceptions of risk, know your numbers, explaining uncertainty, useful resources and references.
