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Showing results for tags 'Patient engagement'.
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Content ArticleIn this blog, peer researchers Saffron, Bianca and Alysha describe their involvement in a study about violence and mental health funded by the UKRI Violence, Abuse and Mental Health Network. The study looked at how adolescents’ experiences of violence and neighbourhood disorder—such as vandalism and muggings—affects their mental health as they move into adulthood. As peer researchers, they helped analyse data and used their lived experience to interpret the findings and co-author an academic research paper. They highlight the value of involving people with relevant lived experience in research studies.
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Content ArticleIn January 2023, The Patients Association celebrates its 60th anniversary. In this interview, CEO Rachel Power talks about why The Patients Association was set up and how the organisation still aims to ensure that everyone can access and benefit from the health and care they need to live well. She describes the benefits of shifting to free membership, how patient partnership is vital to improving health and care services and The Patients Association's role in highlighting the key issues facing patients to the Government. She also highlights the key role that pharmacies play in promoting health information and delivering services to the communities they serve.
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Content ArticleThe Department of health funded an initiative in 2013 to pioneer new approaches that would create a more integrated form of care. In order to receive funding, local Clinical Commissioning Groups were required to engage a range of stakeholders in a practical approach that generated the development of an integrated model of care. To fulfil this requirement, two sequential simulation (SqS) workshops were designed using real patient scenarios from the locality, covering the areas of general practice, community health and adult social care. They were attended by a diverse group of patients and frontline staff. In pre- and post-workshop questionnaires, attendees strongly agreed that they had had an opportunity to contribute to all discussions and raise questions, concerns and ideas (100%). Knowledge of current and new models of care was vastly improved and the opportunity to share information and to network was valued. The SqS approach seen as breaking professional barriers by 100% of attendees.
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Content ArticleOur Health Our Knowledge (OHOK) is a short web-based course developed by patients and GPs to help people make healthcare choices. OHOK is available in English and Welsh, is free to use and is backed by the Royal College of General Practitioners, the Welsh Value in Health Centre/Canolfan Gwerth mewn lechyd Cymru, Realistic Medicine and the Academy of Medical Royal Colleges.
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Content ArticleIt is important that patients understand both verbal and written health information, including clinical explanations, recommendations, instructions and educational materials. However, health information and services often are unfamiliar and confusing, and many people struggle with health literacy and numeracy. Taking steps to help patients understand health information is therefore important to patient engagement and patient-centred care. This checklist is designed to help healthcare providers evaluate their current approaches to ensuring patient understanding and identify potential gaps and opportunities for improvement.
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Content ArticleThere is a paradox of representation in public involvement in research; public contributors are seen as either too naïve to meaningfully contribute or too knowledgeable to represent ‘the average patient’. More expert contributors who have experience in research can therefore be a target for criticism. This study in the journal Health Expectations aimed to examine how representation was discussed in two different scenarios—expert involvement and lived experience. The authors analysed the case of a Lived Experience Advisory Panel (LEAP) chosen for direct personal experience of a topic and the case of an expert Patient and Public Involvement (PPI) panel. They concluded that researchers tend to enact a confirmation logic that seeks a simple, unified patient voice to legitimise decisions. Contributors are therefore limited in their ability to realise a synthesis logic that would actively blend different types of knowledge.
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In this blog, Lotty Tizzard, Patient Safety Learning's Content and Engagement Manager, writes about a recent experience taking her son to a local walk-in centre. She describes the negative response she received when asking questions about her son's treatment, and considers the potentially dangerous consequences of patients and parents being disempowered to fully understand and contribute to their own, or their children's, care. -
Content ArticleThis cross-sectional survey in the BMJ Open aimed to examine the sociodemographic characteristics, activities, motivations, experiences, skills and challenges of patient partners working across multiple health system settings in Canada. This survey was the first of its kind to examine the characteristics, experiences and dynamics of a large sample of self-identified patient partners at a population level. Although patient partners who took part were from similar sociodemographic background, the scope, intensity and longevity of their roles varied. Respondents predominantly identified as female (76.6%), white (84%) and university educated (70.2%). Primary motivations for becoming a patient partner were the desire to improve the health system based on either a negative (36.2%) or positive (23.3%) experience. Respondents reported feeling enthusiastic (83.6%), valued (76.9%) and needed (63.3%) always or most of the time. Just under half felt they had always or often been adequately compensated in their role.
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Content ArticleMany working age adults in the UK lack skills to understand and use information on health and wellbeing. Health literacy skills are lacking in 43% of the population and numeracy skills in 61%. This gap between skills and the complexity of health information leaves millions excluded from making informed decisions about their health, compounding existing health inequalities. COVID-19 accelerated the digital ambition of the NHS Long Term Plan. In the four weeks to 12 April 2020, 71% of routine GP consultations were delivered remotely, according to the Office for National Statistics (ONS). Secretary of State for Health Matt Hancock has said he wants this trend to continue and it is likely remote consultations will be part of the new normal. However, nine million people lack digital skills, 8% are not connected and 66% with online access do not use the internet or digital tools to support their health. In 2019 there was already concern that people with low health literacy and those without access, skills or motivation to use digital tools would be left behind in a digital first NHS. Late in 2019 the Patient Information Forum (PIF) ran a survey of its membership about their action on health and digital literacy. Its findings and recommendations have been made more urgent by the inequalities exposed by the pandemic.
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Content ArticleEvery registered medication has an information insert in its package. This patient leaflet provides information on the product, which includes clinical pharmacology, recommended dose, mode of administration, how supplied, and a large section contains warnings and contraindications, adverse reactions, and precautions. Most of the prescribers do not read the patient information leaflets and do not discuss it with the users, whereas some patients do read it thoroughly. This may create worries and uncertainties resulting in reduced compliance to treatment. With easy access of patients to information on drugs that they use, mainly through the electronic media, it is very important that the text and contents of these patient leaflets are simple to understand and readable. Although information from official health agencies is superior to net-based sources, the patient information leaflets should be improved and become more user-friendly and less frightening.
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Content ArticlePatients can play a distinct role in protecting their health, choosing appropriate treatments for episodes of ill health and managing chronic disease. Considerable evidence suggests that patient engagement can improve their experience and satisfaction and also can be effective clinically and economically. This policy brief outlines what the research evidence tells us about the effects of engaging patients in their clinical care, and it reviews policy interventions that have been (or could be) implemented in different health care systems across Europe. In particular, it focuses on strategies to improve: health literacy treatment decision-making self-management of chronic conditions.
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Content ArticlePatient Experience in England rounds up twelve months of reporting, and summarises key findings. As well as a review of the national patient surveys, this thematic overview of recent research draws out cross-cutting learning on matters such as online engagement, patient safety and the evidence-practice gap in patient experience. "Listening to patients should not be seen as a chore, or a tick box" says Shaun Lintern in the foreword to this year's Patient Experience in England report.
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How to be a savvy patient (Good Housekeeping)
PatientSafetyLearning Team posted an article in Patient engagement
Learning how to self-advocate for your own health increases the chances of the best outcomes. This article, published by Good Housekeeping, provides useful tips for how to get the best care. -
Content ArticleLast year, a report from the Health Foundation looked at quality measurement—including patient experience—across a range of healthcare services. It described a “measurement maze”, with multiple sources and numerous national bodies presiding over data collection. The potential usefulness of the data for trusts was “limited by the data being hard to locate online, with multiple spreadsheets to choose from and large Excel workbooks to download and navigate.” The Patient Experience Library wanted to find a solution to this, to find a way to organise all the data such that every Trust could get one-click access to everything it might need.. Miles Sibley, Director of the Patient Experience Library, explains what they did.
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Content ArticleThis policy is for patients and the public, and for NHS England staff. It sets out NHS England’s ambition of strengthening patient and public participation in all of its work, and how it intends to achieve this. The term ‘patients and the public’ includes everyone who uses services or may do so in the future, including carers and families. People who use health and care services may be referred to as ‘experts by experience’. NHS England recognises and values what they can contribute to its work as a result of their lived experience.
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Content ArticleThis film, produced by Hearts in Healthcare, shows Kathy talking about her experience of being in an Intensive Care Unit following a serious accident. Kathy talks about the importance of communicating to patients, even when they are unable to respond, and recalls one particular nurse who made a huge difference to her recovery. An incredibly powerful account that beautifully illustrates human-centred healthcare.
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Content ArticleOne in three Canadians has had patient harm affect themselves or a loved one, yet the public is collectively unaware that the problem exists. If nothing changes, 1.2 million Canadians will die from preventable patient harm in the next 30 years. The Conquer Silence campaign, from the Canadian Institute of Patient Safety (CPSI), argues that what we must battle in our collective efforts to reduce patient harm, is systemic silence. Silence between patients and providers, between colleagues in healthcare facilities, between administrators in different regions, and between the public and policymakers. If something looks wrong, feels wrong, or is wrong – people need to speak up, in the moment. It is only by bringing these issues to light that we can begin to work together to solve them. The campaign, gives people the opportunity to 'donate their voice' by recording their stories of healthcare harm and sharing advice or insight to help others avoid harm.
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Content ArticleJen Gilroy-Cheetham, Programme Manager at the Innovation Agency, talks about her experiences as a patient and makes a plea for a different way of doing things. Jen was speaking at the Innovation Agency's Eco 18 event, held at Haydock Racecourse in March 2019, focusing on innovating to meet NHS and social care workforce challenges.
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Michael Seres – the passing of a patient champion
Clive Flashman posted an article in Patient engagement
Michael Seres was a husband, a father, a successful entrepreneur and many more things. Most importantly in some ways, he was a lifelong Chrohn's patient who finally succumbed to an associated cancer last weekend. His loss has hit hard those who knew and admired him and the tributes have been numerous and from both clinicians and other patients. His death is a real loss for anyone interested in promoting patient engagement, and the involvement of patients in safer medical practise. -
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UK Standards for Public Involvement
Claire Cox posted an article in Patient engagement
The UK Standards for Public Involvement are designed to improve the quality and consistency of public involvement in research. Developed over three years by a UK-wide partnership, the standards are a description of what good public involvement looks like and encourages approaches and behaviours that are the hallmark of good public involvement, such as flexibility, sharing and learning and respect for each other. The standards are for everyone doing health or social care research and have been tested by over 40 individuals, groups and organisations during a year-long pilot programme. They provide guidance and reassurance for users working towards achieving their own best practice. -
Content ArticleGood patient communication is key, particularly when a patient is waiting for planned care or treatment. From referral by a primary care clinician through to discharge from secondary care – clear, accessible communication is vital throughout. The Elective Recovery Delivery Plan commits to providing better information and support to patients. As we begin to implement new, innovative ways of delivering healthcare, it is more important than ever that patients feel confident they are supported throughout their journey. Prolonged periods of industrial action and continuing pressures have inevitably had an impact on planned care. In this context, it is important that integrated care boards (ICBs) and providers do all they can to offer support to those affected by delays, including with patient communications. This guide sets out key communication principles to help providers deliver personalised, patient-centred communications. It includes considerations for communicating to patients about new models of care as well as helpful information and resources.
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Content ArticleIn this blog, Aleyah Babb-Benjamin, Outreach and Insight Manager at National Voices, shares insights from a Long Covid Webinar event that looked at how to develop a community-focussed response.
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Content ArticleShared decision making describes the way in which patients and their healthcare providers work together to decide treatment, management or self-management support goals. It includes sharing information about a patient’s options and preferred outcomes. The goal is for patient and professional to agree treatment, or no treatment. This webinar hosted by The Patients' Association discusses what makes shared decision making effective, barriers for staff and patients and research on ways to improve the practice.
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Black and Asian bereaved parents whose baby died during pregnancy or shortly after birth have shared their experiences as part of the Sands Listening Project. The 56 parents who took part shone a light on care that works well, while also highlighting barriers, biases, and poor care. In the report, published by Sands, you can read more about: the findings pregnancy loss and baby deaths among Black and Asian babies in the UK real-life experiences and case studies what needs to change. Follow the link below to access the Listening Project report on the Sands website. -
Content ArticleThis report by the Commission for Health Improvement (CHI) sets out what the CHI has found out about the involvement of patients and the public from more than 300 inspections and from its research into the topic. It discusses what CHI looks for when assessing patient, service user, carer and public involvement (PPI), examples of how organisations are tackling this agenda and messages for the NHS in taking PPI forward.
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