The Patient Experience Library

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Measuring and Demonstrating the Value of Patient Engagement Across the Medicines Lifecycle, A Patient Engagement Impact Measurement Framework

The Patient - Patient - Centered Outcomes Research - NON-UK!

13th August 2024

Drug companies often talk to patients about making new medicines. This is called patient engagement. It helps to ensure that new medicines are right for the patients who will take them. Patient engagement is useful, but it does not always happen. Sometimes, companies make important decisions without involving patients. All drug companies need to understand why it is important to listen and learn what patients need. We made a practical way to measure this value. Our team included people from Novartis (a drug company), and patient groups. We developed a structure called the 'framework'. [less]

Drug companies often talk to patients about making new medicines. This is called patient engagement. It helps to ensure that new medicines are right for the patients who will take them. Patient engagement is useful, but it does not always... [more]

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Patient Experiences of the 999 Ambulance Service - Deep Dive Report

Healthwatch Staffordshire

July 2024

The ambulance service is the first port of call for members of the public when medical emergencies arise. They expect a 999 call to bring a timely response. They see on TV the great work that paramedics do day in day out but are increasingly concerned about reports in the media of lengthening ambulance delays with crews queuing outside Hospital Accident and Emergency Departments for long periods. This concern has been picked up by Staffordshire County Council Health and Care Overview and Scrutiny Committee who met with senior managers from West Midlands Ambulance Service to discuss their concerns on 13 November 2023. [less]

The ambulance service is the first port of call for members of the public when medical emergencies arise. They expect a 999 call to bring a timely response. They see on TV the great work that paramedics do day in... [more]

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Enter and View Report - Lisbeth Nursing Home, 204 Walsall Rd, Great Wyrley, Walsall WS6 6NQ

Healthwatch Staffordshire

4th September 2024

Healthwatch Staffordshire, Enter and View Report, Lisbeth Nursing Home, Hornegarth House Nrs Home, 204 Walsall Rd , Great Wyrley, Walsall WS6 6NQ, 4th September 2024

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Enter and View Report - Littleton Lodge, Bishop Street, Hednesford, Cannock WS12 4HT

Healthwatch Staffordshire

19th August 2024

Healthwatch Staffordshire, Enter and View Report, Littleton Lodge, Bishop Street, Hednesford, Cannock WS12 4HT, 19th August 2024

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Please, SEND help! - An Insight Report

Healthwatch East Riding of Yorkshire

2024

This project was initiated after public engagement highlighted inconsistencies from families seeking advice and support from the East Riding of Yorkshire Council (ERYC) social care team in relation to children with SEND. After meeting with a designated social care officer, it was determined that the Local Authority (LA) had received similar inconsistencies in their feedback. HWERY sought to gather views to identify common themes for those who were satisfied with the service, and those who were not. Patterns within feedback will provide an opportunity to make recommendations for service improvement based on lived experience and celebrate areas that are working well. The project looks at the initial contact and response, and not the quality and effectiveness of long - term support. All survey responses are based on the feelings and opinions of those who have accessed the service. [less]

This project was initiated after public engagement highlighted inconsistencies from families seeking advice and support from the East Riding of Yorkshire Council (ERYC) social care team in relation to children with SEND. After meeting with a designated social care officer ... [more]

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Drug company methodologies used for reporting in the UK pharmaceutical industry payment transparency database between 2015 and 2019, A content analysis

Elsevier - Health policy

2024

Pharmaceutical companies spend hundreds of millions of pounds on marketing/R&D - related payments annually to healthcare organisations and healthcare professionals. UK pharmaceutical industry self - regulatory bodies require member companies who sign up to their code of conduct to publish details of their payments. They are also required to publish the methodologies underlying these payments, namely methodological notes. This study aimed to analyse UK pharmaceutical companies' methodological notes and their adherence to the Association of the British Pharmaceutical Industry code of conduct and other relevant guidance. We conducted a content analysis of methodological notes for the years 2015, 2017 and 2019 and assessed companies' adherence to self - regulatory bodies' requirements and recommendations for methodology disclosure. Overall, 90 companies made payment disclosures in all three years, publishing 269 methodological notes. We found gaps in adherence to self - regulatory requirements. Only 3 (3. 3 %) companies provided clear information for all self - regulatory body recommendations and regulations in all of their notes. Companies also varied in their approaches to important areas. For example, of the 244 notes with clear information on VAT management, 36. 1 % (N = 88) included VAT, 30. 3 % (N = 74) excluded VAT, and 33. 6 % (N = 82) had multiple rules for VAT. There was evidence of widespread non - adherence to self - regulatory requirements. This suggests flaws with self - regul [less]

Pharmaceutical companies spend hundreds of millions of pounds on marketing/R&D - related payments annually to healthcare organisations and healthcare professionals. UK pharmaceutical industry self - regulatory bodies require member companies who sign up to their code of conduct to publish details of their payments ... [more]

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Are we listening - The role of patient experience in supporting and informing service improvement in the NHS

Neurological Alliance

August 2024

Patient experience is recognised as an important indicator of the quality of healthcare - patients, particularly people with long term and/or complex conditions, often have a better insight into the effectiveness, coordination or impact of healthcare than most. Understanding patient experience, alongside other measures of clinical effectiveness, wellbeing and patient safety, is therefore critical. Every two years the Neurological Alliance runs My Neuro Survey, the largest national neurological patient experience survey in the UK. A key focus of the survey is to inform and support improvement in services for people affected by neurological conditions. Previous My Neuro Survey data has been used to support the development of new neuroscience services and to provide patient experience insights to NHS Neurosurgery Networks. We are not alone in this. Many other patient groups, statutory bodies, regulators and the NHS do similar work to capture and act on the experiences of people who use health services. [less]

Patient experience is recognised as an important indicator of the quality of healthcare - patients, particularly people with long term and/or complex conditions, often have a better insight into the effectiveness, coordination or impact of healthcare than most. Understanding patient... [more]

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Maternal Mental Health Services, Progress Report

The Maternal Mental Health Alliance (MMHA)

October 2024

Despite the devastating human consequences and significant economic costs (estimated at 8. 1 billion a year), women's mental health still does not receive anywhere near the same level of attention or investment as their physical health during and after pregnancy. Even with this clear demonstration of need, many women have struggled to access support. Growing awareness in the wider policy landscape has added to collective understanding and highlighted the suffering that women and families experience when they cannot access the right care at the right time. It is crucial that we identify remaining gaps in care, unmet needs and inequities across the system [less]

Despite the devastating human consequences and significant economic costs (estimated at 8. 1 billion a year), women's mental health still does not receive anywhere near the same level of attention or investment as their physical health during and after pregnancy. Even... [more]

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Unheard Voices, Experiences of using Health and Care Services by those who are D/deaf and Hard of Hearing

Healthwatch Bolton

June 2024

There are some 46, 500 deaf, Deaf and hard of hearing people in Bolton, 15. 7% of the local population. We met with the Chief Executive of Bolton Deaf Society - John Hesketh, who told us about some of the issues and barriers that D/deaf people face with using all public services, not just health and care. It was clear that people are still facing barriers that have been highlighted many times over the years, about the struggles D/deaf people have when accessing services. [less]

There are some 46, 500 deaf, Deaf and hard of hearing people in Bolton, 15. 7% of the local population. We met with the Chief Executive of Bolton Deaf Society - John Hesketh, who told us about some of the issues and... [more]

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Enter and View Report - Burnley Group Practice, St Peter's Centre, Church Street, Burnley BB11 2DL

Healthwatch Lancashire

25th June 2024

Healthwatch Lancashire, Enter and View Report, Burnley Group Practice, St Peter's Centre, Church Street, Burnley BB11 2DL, 25th June 2024

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