How can we measure patient experience? Experience is subjective, and it is difficult to “measure” how one person’s experience compares to that of someone else who might have eaten the same meal, watched the same film or visited the same healthcare service.
Yet patient experience is recognised as a key element of the quality of healthcare, along with patient safety and clinical outcomes. To improve quality, we need to understand and, where necessary, improve patient experience.
Across the NHS and internationally patient experience is explored through surveys, reviewing complaints and compliments, monitoring social media, using focus groups and other market research methods. Most recently the NHS has introduced the Family and Friends Test as a generic measure of patient experience.
Video playlist - Patient experience and research
![AIDS: Doctors and Nurses tell their Stories (2017)](/assets/website/images/placeholder/video-placeholder.jpg)
AIDS: Doctors and Nurses tell their Stories (2017)
Doctors and Nurses tell their Stories
This 2017 documentary on the experiences of HIV nurses and doctors working during the 80s, includes interviews with Jane Bruton, a Clinical Research Manager within the Patient Experience Research Centre (PERC). Jane was a HIV Nurse during the 80s supporting patients in Leicester and at Middlesex Hospital. Her experiences were also shared within a 2021 article in The Observer. Jane has been involved in a research study which explored the experiences of people diagnosed with HIV across 30 years (1986-2014) and continues to support ongoing research at PERC.
![Decision making in people living with frailty](/assets/website/images/placeholder/video-placeholder.jpg)
Decision making in people living with frailty
Co-designed animation exploring decision making in people living with frailty
![Why Co-Production? Reflections from an HIV Research Study](/assets/website/images/placeholder/video-placeholder.jpg)
Why Co-Production? Reflections from an HIV Research Study
A film by Imperial College London in collaboration with Positively UK, about participatory research
![Exploring experiences of cancer via a poetry in residence](/assets/website/images/placeholder/video-placeholder.jpg)
People Like You: Written Portraits (Nov 2020)
Di Sherlock's Written Portraits Virtual Launch: experiences of cancer
This video is from a virtual launch of Di Sherlock's "Written Portraits". During a poetry residency, Di talked to people at Maggie’s West London and Charing Cross Hospital in London who are affected by, and working with, cancer. Her poetry practice involves writing a ‘portrait’ from these conversations. She then gives back a poem. The editing process goes to and fro between Di and the ‘sitter’ until they consider the portrait is a likeness or resemblance that they also like. This launch event included the following readings: (1) 'Vital Conversation' read by Clive Llewellyn; (2) 'Rewilding the Self' from 'The Art Class' read by Lin Sagovsky; (3) 'The Three Musketeers' read by Chris Barnes; and (4) 'Everyday Heroines' read by Susan Aderin. The full 'Written Portraits' are available at: peoplelikeyou.ac.uk/poem/. This was part of the research project ‘People Like You’: Contemporary Figures of Personalisation, supported by the Wellcome Trust: peoplelikeyou.ac.uk/
Our Research
Below is a selection of some of our ongoing and past research projects. Click through to our Covid-19 reasech page for more information on our current work.
Current projects
Past Projects
A major focus of our work is to understand the validity of different approaches, to explore the best ways to use results of surveys and to develop new methods for gathering and analysing patient experience. Some of the research areas we've been involved in are shown below, along with details of specific projects and participant privacy information where relevant.
Research projects
Prospective Planning for Escalation of Care and Treatment
Summary
People are now living longer, but many are frail or have long-term health conditions.
This group of people are more likely to have an acute health event. Acute health events are those in which you may be so unwell that you require an emergency admission to a hospital or the intensive care unit (ICU). The benefits of admission to hospital or the ICU for this group of people is not always clear. They may find hospital or ICU treatment burdensome. They may also find it difficult to get back to their previous level of function following a hospital admission.
People living with frailty and long-term health conditions are rarely asked what they would want when faced with an acute health event. This means that people are not given the chance to think about and discuss what kind of care they would want in the future if they became unwell.
Our Study:
We wanted to help people living with long-term conditions and frailty to make decisions about how they would want to be cared for if they became unwell.
In Phase One of this project, we held interviews and focus groups (group discussions) with people living with long-term conditions, their families and healthcare professionals. We were particularly interested in how people make decisions related to acute health events. We wanted to know what information and materials might support this process.
Phase Two of this project included a series of co-design workshops. This means the researchers worked together with people living with long-term conditions, their families and healthcare professionals. We developed information materials based on what we learnt from the first phase of the study. We hope that the materials that we developed will support people to make these important decisions.
Full study title:
The ProsPECT Study: Prospective Planning for Escalation of Care and Treatment
Sponsorship, funding and ethical approval:
This project was being sponsored by Imperial College London and is funded by the National Institute for Health Research (NIHR) Imperial Biomedical Research Centre. The London-Chelsea Research Ethics Committee has approved this study (REC Reference 21/LO/0125).
Contact us
PERC Director and Co-Founder
Prof. Helen Ward
h.ward@imperial.ac.uk
For enquiries about PERC's research activity, please email:
patientexperience@imperial.ac.uk
For enquiries about public involvement in research, please email:
publicinvolvement@imperial.ac.uk
Read our blog
All posts- HOPE for Hand Osteoarthritis
- Having an Impact with Public Involvement in Paediatric Intensive Care Research
- Public engagement and involvement at the Cardiomyopathy UK conference: When researchers and the public meet
- Why did nobody ask us?! Reflections and findings from co-produced research into children’s vaccine uptake.
- Three key takeaways from our participation in the Research Engagement Network (REN) community roadshows
- You and Your Health Data: Results of our Great Exhibition Road Festival activity