The Patient Experience Library

Benefits, barriers and recommendations for youth engagement in health research, combining evidence-based and youth perspectives

Engaging and partnering with youth in research related to healthcare is important, but often not done well. As researchers, we recognize that youth perspectives are needed to make sure we are asking the right questions, using appropriate research methods, and interpreting the results correctly. We searched the literature to identify challenges researchers have faced engaging youth in health research, as well as strategies to partner with youth in a meaningful way. We worked closely with 11 youth from across Canada with experience in healthcare, who formed a Youth Advi- sory Council. The youth advisors reviewed the literature we found and discussed how it fit with their own experiences and perspectives through group meetings with the research team. Youth advisors divided into four groups to co- author parts of this paper, including identifying the importance, benefits, and challenges of engaging in research and providing reflections on their positive and negative previous experiences as youth advisors. This paper provides an overview of recommendations for researchers to engage with youth in a meaningful way, including how they communicate and meet with youth, recognize their contributions, and implement feedback to improve the experi- ences of youth partne

'Should we even have questions?' From survey to exhibition - co-producing research about 'mental health' with carers and adults with learning disabilities

Carers' mental health is often the focus of policy and research in Global North contexts. Research exploring carers' views often uses survey methods to collect information about their experiences and views of services and support. However, the experiences of adult carers of adults with learning disabilities have often been marginalised within these domains. Here, we report on how, working together with family carers, we disrupted survey methods and generated new insights into what matters to family carers when sharing their experiences of care, mental health, services and support, as well as the crucial role of co-production in this research.

'The Service, Online,' A review of GP Practice websites in Manchester regarding their offer of the Enhanced Access Service

This report aims to present the key findings, conclusions and recommendations of an Healthwatch Manchester(HWM) review which assessed 83 GP practice websites in Manchester on the information they published about the Enhanced Access Service (EAS).

'The Service,' A Mystery Shopper review of the Enhanced Access Service across GP Practices in Manchester

This report aims to present key findings, conclusions and recommendations based upon the results of a Mystery Shopper investigation completed by Healthwatch Manchester (HWM).

Healthwatch Cheshire Quarterly Report - Quarter 1

The comments and activity in this Healthwatch Cheshire East quarterly report cover the period of 1st April - 30th June 2024. We obtain feedback through face-to-face engagement activities, online via our Feedback Centre, social media, email, and by telephone. Healthwatch team members are still attending numerous group meetings which are being held virtually

Exploring LGBTQ+ experiences of health and care services in Redbridge

Lesbian, gay, bisexual, trans and queer/ questioning (LGBTQ+) people are at higher risk of having poorer outcomes across multiple health and care issues. The health and care needs of LGBTQ+ people are starting to receive welcome attention across the health and care system. However, little is known about LGBTQ+ experiences of health and care in Redbridge. Redbridge Rainbow wanted to better understand LGBTQ+ people's experiences of local health and social care services, as well as the experiences of those working in health and care services. This research project included desk research, interviews with LGBTQ+ people and a survey of health and social care professionals.

Mental health support for people with long term physical health conditions

The initial feedback collected by Healthwatch Bristol which led to the focus of this project suggested difficulties accessing mental health support. Through undergoing desk research and meeting with stakeholders, we decided to explore this topic further focusing specifically on people with long term physical health conditions (LTCs) and their experiences. We collected feedback from 86 people living in Bristol during March 2024 to provide evidence-based recommendations around access and experience for local people. Our research explored how people feel their mental health is impacted by their LTC, interactions they've had with physical and mental health services, and barriers to mental health support they've encountered.

Time to care, Findings from a nationally representative survey of experiences at the end of life in England and Wales - Research Report

Everyone affected by dying, death, and bereavement deserves the best possible care. Concerns about the quality of care at the end of life came to the fore during the Covid-19 pandemic, which led not only to more people dying but shifted patterns of care for people approaching the end of life, increased pressure on community services, and amplified inequalities in end of life care. Across the UK, the number of people who need palliative and end of life care is increasing steeply. However, there is an important gap in our understanding of the outcomes and experiences of people affected by dying, death, and bereavement at a national level. This is the final report from the Marie Curie Better End of Life programme, which is a collaboration, funded by Marie Curie, between King's College London's Cicely Saunders Institute, Hull York Medical School at the University of Hull, and the University of Cambridge. We report findings from a national post-bereavement survey, the QUALYCARE survey, conducted in 2023 across England and Wales. The aim is to describe the outcomes, experiences, and use of care services by people affected by dying, death, and bereavement in England and Wales.

Time to care in England - Implications for England of 'Time to care: Findings from a nationally representative survey of experiences at the end of life in England and Wales', Policy summary

This briefing highlights key findings and policy implications from the largest nationally representative survey of people affected by dying, death and bereavement since 2015. The survey reveals significant barriers experienced by people seeking to access the end of life care they need. But it also shows that good care is possible and the models of good practice in this briefing illustrate how the challenges can be overcome.

Citizen involvement in research on technological innovations for health, care or well-being, a scoping review

Citizen science can be a powerful approach to foster the successful implementation of technological innovations in health, care or well-being. Involving experience experts as co-researchers or co-designers of technological inno- vations facilitates mutual learning, community building, and empowerment. By utilizing the expert knowledge of the intended users, innovations have a better chance to get adopted and solve complex health-related problems. As citizen science is still a relatively new practice for health and well-being, little is known about effective methods and guidelines for successful collaboration. This scoping review aims to provide insight in (1) the levels of citizen involvement in current research on technological innovations for health, care or well-being, (2) the used participatory methodologies, and (3) lesson's learned by the researchers. A scoping review was conducted and reported in accordance with the PRISMA-ScR guidelines. The search was performed in SCOPUS in January 2021 and included peer-reviewed journal and conference papers published between 2016 and 2020. The final selection (N = 83) was limited to empirical studies that had a clear focus on tech- nological innovations for health, care or well-being and involved citizens at the level of collaboration or higher. Our results show a growing interest in citizens science as an inclusive research approach. Citizens are predominantly involved in the design phase of innovations and less in the preparation, data-analyses or reporting phase. Eight records had citizens in the lead in one of the research phases. Researcher use different terms to describe their methodological approach including participatory design, co-design, community based participatory research, co-creation, public and patient involvement, partcipatory action research, user-centred design and citizen science. Our selection of cases shows that succesful citizen science projects develop a structural and longitudinal partnership with their collaborators, use a situated and adaptive research approach, and have researchers that are willing to abandon traditional power dynamics and engage in a mutual learning experience.