Spotlight on: Dr Emily Boxell, a Senior Research Associate in the Survey Coordination Centre
Emily joined Picker in February 2019 and oversees several national surveys within the NHS Patient Survey Programme. She has over ten years’ experience designing and conducting health-related research and service evaluation projects within the academic, charity and NHS sectors.
She holds an undergraduate BSc degree in Psychology, and her Masters and PhD specialised in Health Psychology.
Tell us about your research into age-related macular degeneration (AMD)
Before I started working at Picker, I carried out a PhD at Royal Holloway, University of London. This focused on the experiences of living with age-related macular degeneration (AMD) for patients and their carers. AMD is the leading cause of sight loss in the UK, affecting more than 600,000 people. There is no cure for AMD, although treatment is available for wet AMD to help prevent vision loss. Treatment is more effective the earlier it is given, so it’s important that patients seek help as soon as possible.
In 1999 a survey was carried out on 2000 members of the Macular Society. The results, published in 2002, led the Royal College of Ophthalmologists to provide guidelines (in 2009) for the diagnosis and treatment of AMD that aimed to overcome the issues identified.
In 2013, I surveyed members of the Macular Society to investigate their experiences when they were first diagnosed, and compared them to the experiences of people diagnosed with AMD who were surveyed in 1999. The main part of my research examined the healthcare experiences of patients, particularly around the time of diagnosis of AMD.
A summary of the findings are below and the published results are here:
- Most 2013 survey respondents were given the name of their macular condition (91%), felt the healthcare professional was interested in them (71%) and were satisfied overall with the diagnostic consultation (76%). These outcomes show significant improvement since the 1999 survey.
- However, low information and support provision remained. For example, 44% of respondents diagnosed after the Royal College of Ophthalmologists 2009 guidelines reported not receiving information on what to do if vision deteriorated. Lack of such information at diagnosis was significantly associated with being registered as sight impaired or severely sight impaired.
I was also interested in whether patients recognised symptoms of AMD, their experience of seeking help and their reported reasons for the delay in getting a diagnosis. One of the members of the research team, Alice Parfitt, analysed the survey responses from more than 600 members. She found that one-third of respondents could detect symptoms of AMD themselves: the rest reported that a healthcare professional first noticed the AMD.
The research team and the Macular Society have joined forces to highlight the need to increase awareness of symptoms of macular disease, and the need to seek urgent help from an optometrist or ophthalmologist if symptoms are experienced.
The findings have recently been published in the journal BMJ Open Ophthalmology.
What was it about Picker that made you want to get involved?
I came across Picker whilst I was completing my PhD; I was impressed by their focus on improving patient experiences. As well as specialising in the measurement of patient experiences, Picker also assists organisations in translating the findings into changes in healthcare practice. This is done through experience and engagement initiatives including developing workshop and engagement events, provision of training, and promotion of the use of experience feedback.
What does a typical working day look like for you?
I start relatively early – 8am to miss the Oxford traffic! My day can be quite varied: from team meetings to conducting quality checks on survey data and reports. I lead several national surveys at Picker. Most recently, we have published the results of the Children and Young People’s patient experience survey, which received over 33,000 responses. Overall, the survey results showed that most children and young people have good experiences of care in hospital. Despite this, there are still some key areas where care could be improved, in particular:
- Parents’ wish to be more involved in the care of the child.
- Young people wanting to be more involved in the decision-making about their care and treatment.
- Entertainment, including whether staff played with the child and access to good quality Wi-Fi.
I’m also responsible for the national Maternity 2019 survey. The results for this survey will be published on 28th January, so we are excitedly preparing the data and analysing the results. Crucially this will answer the question on whether maternity services are improving, remaining stable or getting worse.
What is your proudest career achievement to date?
I’m proud to work in a field which gives patients and their families a voice and an opportunity to provide feedback on their experiences in healthcare to help the continuing evolution of services.
What do you think the future holds for person centred care?
It has to be at the forefront of what healthcare providers do because we should be providing a certain level of service and quality of care, which is going to become increasingly difficult with a growing and ageing population.