Stephen Taylor, Joe Bugler, and Annette Dancer are three stroke survivors affected by dysarthria (unclear speech). They are also members of HEARD (Healing, Empowered And Recovering from Dysarthria), a patient involvement group which has helped to shape research to identify the things that matter most in speech recovery after stroke. In this blog, they tell us more.
Patient & Public Involvement
In a blog for physiotherapists, other health professionals and anyone interested in arts and health, Hannah Dye from Breathe Arts Health Research explains how their innovative dance programme provides an alternative to exercise classes for older adults prescribed strength and balance physiotherapy at Guy’s Hospital, London. Created with patients, the programme is offering people choice in their healthcare pathway and bringing multiple benefits.
A new project aims to find out what are the top questions that need answering about dementia and hearing conditions, in the first Priority Setting Partnership (PSP) to look at two health areas together. Sarah Chapman looks at what this is about, and hears from some of those involved in the PSP about what it hopes to achieve and why it’s important.
A team from the University of Exeter write about evidence gap maps, a way of visually presenting an overview of the available evidence on health topics and showing where the gaps are.
Roulla Katiri, chief audiologist at the Mater Hospital in Dublin, and Lewis Williams, who developed single-sided deafness in 2018, explain how patients and other experts have worked together to identify the most important things to measure in research studies about treatments for single-sided deafness.
Karen Morley reflects on her experience of becoming a consumer author on a Cochrane Review, using her lived experience of Obsessive Compulsive Disorder (OCD) and considers the questions it raised for her about Public Involvement in research.
In this blog, written for women, health professionals, policy makers and commissioners, Rachel Plachcinski and Ngawai Moss discuss the lack of evidence for planning pregnancy and maternity care for women with two or more long term health conditions. They explore women’s experiences through their pregnancy journeys: identifying challenges and gaps in understanding, plus what matters to women during pregnancy when living with long term health conditions.
Throughout June, we are shining a spotlight on living with long-term conditions, sharing blogs that include relevant evidence and personal reflections. The series will also include a discussion on Twitter about the impact language can have on people with long-term conditions.
In this blog for people living with a brain tumour, healthcare practitioners and anyone with an interest in brain tumours, Helen Bulbeck, Cochrane consumer representative and director of policy and services for brainstrust, looks at the latest Cochrane evidence on brain tumours and reflects on what this special collection means for the brain tumour community and why collaboration has been key to the success of this work.
Cathering Houghton blogs about what influences people's decisions to take part in randomised trials.
In this blog for informal cancer caregivers, Beverley Lim Høeg and Pernille Envold Bidstrup, who are both psychologists and cancer researchers, look at the challenges faced by those caring for a loved-one with cancer and explore why informal caregivers deserve more support and focus in cancer treatment and research. Pernille is also the mother of a 9 year old cancer survivor.
Caroline Whiting reflects on the milestone of 100 completed Priority Setting Partnerships and the importance of this work with patients, carers and clinicians for making research relevant and useful.