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Content ArticleHappy Patient is a three-year project co-funded by the European Union, that seeks to reduce the impact of antimicrobial resistance (AMR) by decreasing the inappropriate use of antibiotics for the management of common community-acquired infection. Up to 25,000 people die every year in Europe as a direct consequence of the misuse of antibiotics, a figure that rises up to 30,000 in the United States (European Centre for Disease Prevention and Control). The Happy Patient Website offers a variety of communication tools for healthcare professionals and patients, including: Leaflet - Viruses or bacteria: What caused your infection? Urinary tract infections: A leaflet for older adults and their families Antibiotics prescription pad 5 myths about urinary tract infections (UTIs) in nursing home residents What you need to know if you have been prescribed an antibiotic
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Content ArticleWith patients increasingly being able to view their healthcare records online or via an app, it is very important that they understand what their records say. This webpage by the NHS explains what some of the most common medical abbreviations mean, to help patients understand what has been written about their care and treatment.
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Content ArticleThis cross-sectional study in BMJ Quality & Safety aimed to assess patient comfort in speaking up about problems during hospitalisation, and to identify patients at increased risk of having a problem and not feeling comfortable speaking up. The authors assessed the responses of 10,212 patients at eight hospitals in Maryland and Washington to the question, "How often did you feel comfortable speaking up if you had any problems in your care?" The study found that 48.6% of respondents indicated that they had experienced a problem during hospitalisation. Of these, 1,514 (30.5%) did not always feel comfortable speaking up. The authors concluded that creating conditions for patients to be comfortable speaking up may result in service recovery opportunities and improved patient experience.
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Content ArticleWe put a lot of trust in the medical profession. We are usually going to the doctor at our most vulnerable—when we don’t feel well, something is wrong, and we need help. It can be a frightening experience that can become a frustrating or even dangerous one when medical concerns are minimized or dismissed. However, there are steps patients can take to advocate for themselves in a medical setting to reduce the risk of medical gaslighting.
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Content ArticleThe non-profit Patient Information Forum (PIF) has published a new one-page guide to Body Mass Index (BMI). The poster was developed following user engagement sessions with patients and healthcare professionals which highlighted the amount of misinformation surrounding BMI. It is free to download and share and can be used directly by patients or a resource for healthcare professionals. Welcoming the publication of 'BMI – What you need to know', Dr Juhi Tandon said: “As a GP for more than a decade, I still struggle to have the BMI conversation with patients. Discussing someone’s BMI can easily make them feel uncomfortable as they feel like they are being judged. It will be very helpful to share a clear fact sheet to help patients understand more about BMI in a non-judgemental way.”
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Content ArticleIn spring 2021, YouTube asked the National Academy of Medicine to bring together experts to develop principles for elevating credible health information online. In this interview with The Commonwealth Fund, Garth Graham, YouTube’s director and global head of health care and public health partnerships talks about how YouTube—which reaches two billion people each month—has been working with health systems in the US to create high-quality, engaging health content.
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Content ArticleThe Accessible Information Standard is a set of principles for the presenting, sharing and discussing information with patients. It aims to make sure that people who have a disability, impairment or sensory loss get information that they can access and understand, and any communication support that they need from health and care services.
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The Beryl Institute - Defining patient experience
Patient-Safety-Learning posted an article in Patient engagement
The Beryl Institute formed a working group of patient experience leaders from a variety of healthcare organisations to develop its definition of patient experience. The group shared perspectives, insights and backgrounds on what patient experience means to them and collaboratively created a definition, which is described in this video. -
Content ArticleThis information sheet produced by South Australia Health's Safety and Quality Unit describes how patients and staff can work together to make sure that if clinical deterioration occurs, it will be acted upon in a timely and effective manner. The information also applies to carers, family members, friends or the patient’s appointed responsible person. It includes information relating to deterioration during an emergency department visit or hospital stay, and at and after discharge.
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Content ArticlePatients are increasingly feeding back about their healthcare experiences online and NHS Trusts are adopting different approaches to responding. This study in the journal Digital health aimed to explore the sociocultural contexts underpinning three organisations who adopted different approaches to responding to online patient feedback. The authors identified a range of barriers facing organisations who ignore or provide generic responses to patient feedback online and demonstrated the sociocultural context in which online interactions between staff and patients can be used to inform improvement. However, they highlight that this represented a slow and difficult organisational journey.
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Patients Included charter
Patient-Safety-Learning posted an article in Patient engagement
The Patients Included charters were created by Lucien Engelen in 2010. Fed up of hearing people talk about 'what the patient wants' at medical conferences where no patients were present, he decided he would no longer speak at or attend conferences where patients were not speaking, offered bursaries to attend or part of the organising committee. The charters provide organisations with a way to demonstrate their commitment to incorporating the experience and insight of patients into their organisations by ensuring that they are neither excluded nor exploited. The charters that have been published so far include: Conferences (v.1.0 May 2015) Journals (v.1.0 April 2016) Patient information resources (v.1.0 December 2016) Ethics (v.1.0 April 2018) The Patients Included logo can also be used by conferences who adopt the conference charter. -
Content ArticleSafety communication refers to the sharing of safety information within organisations in order to mitigate hazards and improve risk management. External stakeholders, such as patients and carers, also communicate safety information to healthcare organisations. This article in the Journal of Risk Research examines the nature of safety communication behaviours seen in patients and their families by identifying and examining 410 narrative accounts. The author found that the success of patient and family safety communication in reducing risk was variable. Problems in hospital safety culture such as high workloads and downplaying safety problems, meant that information provided was often not acted upon.
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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 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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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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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 ArticleThis 2023 updated guidance, produced by the Patient Information Forum, aims to help anyone who creates health information for children and young people improve what they do. It focuses on the practical aspects of creating good health information, including involving children, choosing the right format, writing for children, and tackling sensitive issues. It places health inequality and the need to engage children and young people of all backgrounds people at its centre. Case studies provide both practical tips and inspiration. The guide covers the use of stories and play, social media and apps and how and when to give information. It provides guidance on digital, mental health needs and working with children who are traumatised or at risk of violence. Experts from child psychiatry, leading children’s health charities, Barts Health NHS Trust and NHS England contributed to the guide. This guide was part funded by NHS England.
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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 ArticleAnnette McKinnon is a patient with chronic disease. Her experience has led her to be involved in trying to change healthcare so that the voice of the patient is included in decisions. She is a volunteer member of many groups and committees and is a patient partner on several Canadian research teams. In her blog, published by the BMJ, Annette discusses the importance of patient-centred care, information sharing and the barriers to achieving this.
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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 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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Content Article
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.
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