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)
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
Co-designed animation exploring decision making in people living with frailty
Why Co-Production? Reflections from an HIV Research Study
A film by Imperial College London in collaboration with Positively UK, about participatory research
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/
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.
Prospective Planning for Escalation of Care and Treatment
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.
We want 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 will be holding interviews and focus groups (group discussions) with people living with long-term conditions, their families and healthcare professionals. We are particularly interested in how people make decisions related to acute health events. We want to know what information and materials might support this process.
Phase Two of this project will be a series of co-design workshops. This means the researchers will be working together with people living with long-term conditions, their families and healthcare professionals. We will develop information materials based on what we have learnt from the first phase of the study. We hope that the materials that we develop 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 is 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).
For more information please contact:
Adam Lound Research Physiotherapist
Current PhD projects
Title - Determinants of health & wellbeing among PLHIV in the UK
A mixed-methods PhD exploring the impact of social/structural factors, and COVID-19, on the health and wellbeing of people living with HIV. The quantitative component will use data from the 2017 Positive Voices study and the qualitative component will include a participatory research approach in collaboration with the peer-led HIV support charity, Positively UK.
Link to further detail on PhD: https://liss-dtp.ac.uk/student/2019-20/vasiliki-papageorgiou/
Link to detail on qual project: https://www.imperial.ac.uk/patient-experience-research-centre/covid-19/covid-19-research/hiv-care/
Title - Barriers and facilitators to PrEP access in underserved populations in England.
A mixed-methods PhD project exploring the barriers and facilitators that underserved communities face to access PrEP in England. The quantitative part of the project will use a combination GUMCAD and HARS data to investigate the need for PrEP in underserved communities which will inform which of those communities should be invited for the qualitative component of the PhD. The qualitative part will follow a participatory methodology to co-design novels strategies of PrEP delivery in collaborations with representatives of the identified underserved populations."
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.
Cancer service evaluation
This is a follow-on study from two studies; the first was undertaken in Spring 2014 (“Understanding the journey of women with Breast Cancer”) and aimed to describe the journeys of women with breast cancer in one hospital trust and the factors that influenced their experiences of hospital care (McGrath-Lone, Day and Ward 2014). The study findings identified that four main aspects of care strongly influenced patient experience: navigating multiple complex systems; support; information; and communication. The second study was “Understanding the journeys of patients with cancer”.
Following completion of the previous studies, an evidence-based co-design project was undertaken at the hospital trust with the intention of transforming the cancer services out-patient department on one of the sites; specifically, to improve the physical environment and the experience for both patients and staff. The changes made included: new models of team working; re-design of the ways in which clinic rooms were used; restructuring the phlebotomy service; changes to the pharmacy service; introduction of navigators; and general refurbishment. The changes were made for all cancer out-patient clinics run from the site, including the breast cancer clinic.
Primarily a service evaluation, the purpose of this study is to evaluate the changes made and to assess their impact on patient experience. The study is in its early stages, with data collection planned for July 2016 with a view to completing the study by December 2016.
Perspectives on consent
Research title: Perspectives on consent: understanding representation in biobanks; and Attitudes towards recruitment and participation in a clinical biobank
100,000 Genomes - service review
The 100,000 Genomes Project aims to sequence 100,000 genomes from around 70,000 patients with cancer, rare disorders, and infectious disease. The sequence data will be linked to the participants’ clinical and diagnostic information. This combination will help inform the overall interpretation of the participant’s genome sequence. This could provide a new diagnosis or information affecting management of care. Making this information available for research will also likely benefit patients in the future. The project follows established legal and regulatory standards for seeking the informed consent of its participants, or those who could consent on their behalf.
Some NHS GMC feedback from patients and patient involvement leads has been that the consent materials needed improvement. A commitment to evaluate the consent material was already outlined at the 100,000 Genomes Project approved Protocol (v 2.0). As such this national service evaluation forms a Schedule linked with the Protocol. It aims:
- To evaluate the participant material.
- To evaluate the consent discussion process.
- To provide evidence to inform development of consent materials and processes in this area.
The evaluation consists of three activities to provide evidence related to 10 pre-determined themes (prioritised by Genomics England, after feedback during the first four months of recruitment).
- Activity 1, led by Markella Boudioni, consists of five focus groups of patient and public representatives who have previous involvement at GMC level with the project. They have been arranged by the GMCs across England. Three topic areas are covered: logical flow and complexity of consent documentation and broad consent for reporting back of additional findings.
- Activity 2, led by Caroline Benjamin, is an on-line health professional survey sent to all active recruiters, requesting feedback of their experience and perceptions of the process during the snap-shot period.
- Activity 3, led by Elliot Marston/Antje Lindenmeyer, is a participant feedback postcard survey (16 questions) of individuals consented to the 100,000 Genomes Project during the snap-shot period.
The evidence from the three activities will be analysed separately. Then they will be put together to combine evidence across all three activities under the ten pre-determined themes. A report will be issued to the Genomics England Steering Group who will consider the findings along with other on-going research to determine amendments to the existing consent process and documentation.
This project acknowledges funding from: Genomics England, University of Central Lancashire, University of Birmingham, Imperial College London, North West Coast Academic Health Science Centre.
To learn more visit Genomics England.
Positive Voices is a survey of the lives, experiences, and health care needs of people living with HIV in the UK. It is a joint venture between Public Health England, UCL, and Imperial College London. The pilot round of Positive Voices was conducted from May to November 2014 and the first full survey round is expected to begin in summer 2016.
Positive Voices is the first national, large-scale survey of people living with HIV, which aims to collect data that represent the wider HIV community. The survey asks about education and employment, housing and religion, sex and sexuality, alcohol, tobacco and drug use, adherence to and side effects from HIV medication, quality of life, experiences with HIV stigma and discrimination, and satisfaction with NHS services. The data provide valuable insights into the issues that most affect the health and lives of people with HIV. The results of the survey will be used to monitor and improve existing HIV services and policies and to support the provision of new services.
Visit Positive Voices to learn more.
Selected conference presentations:
- EL Pufall; M Kall; M Shahmanesh; ANardone; R Gilson; V Delpech; H Ward; on behalf of The Positive Voices Study Group. “Chemsex” and High-Risk Sexual Behaviours in HIV-Positive Men Who Have Sex with Men. CROI 2016, February 22–25 2016, Boston, Massachusetts.
- M Kall; V Delpech; R Gilson; M Shahmanesh; A Nardone; for the Positive Voices Study Group. Patient experience with NHS HIV specialist services: results from the Positive Voices pilot survey. BHIVA 2015, April 21-24 2015, Brighton, UK.
Family and Friends Test analysis
This project explores the utility and validity of results from the national Family and Friends Test (FFT) survey. The survey was begun in 2013 and has been extended to cover increasing numbers of services. We aim to explore whether the survey can produce meaningful insights, accurately represent patient views and produce usable statistical data.
We have applied both quantitative and qualitative analysis approaches to this work: we have investigated how Statistical Process Control (SPC) methods could facilitate more informative use of results, explored demographic response bias, compared ratings with other care quality measures, examined themes in free-text comments and contrasted this with corresponding numerical ratings.
We have found that:
- SPC methods can detect hospitals with unusually poor ratings, despite little variation in overall scores; this approach could add rigour to current analysis and interpretation of results.
- Certain demographic groups (particularly those commonly reporting poorer experiences) are represented to a lesser extent in patient feedback from the FFT.
- There are associations between FFT ratings and other patient satisfaction measures, but correlations with wider care quality measures are inconsistent.
- Qualitative analysis of free text comments can identify themes in the data that are pertinent to service improvement. This information may be the most useful way to employ FFT results at ward- or service-level.
- While there is good agreement between positive scores and positive comments, a large proportion of patients rating care negatively leave a comment with a positive sentiment; this could either indicate response errors or that the survey is too simplistic to capture patients’ varied experiences.
This research has implications for how FFT data are used by health service providers and supports best practice when using patient feedback for service improvement.
- Conference poster 2015: “Using statistical analysis to explore the utility of data from the friends and family test”.
- Journal articles are currently under preparation.
National Audit of Dementia
The National Audit of Dementia works with general hospitals to measure aspects of inpatient care which are known to impact on people with dementia. Working together with the Royal College of Psychiatrists, we have developed a short experience questionnaire for carers to be included for the first time during the 2016 audit.
The project included a review of the literature to support the evidence base for the questionnaire content, as well as a review of other relevant questionnaires. Carers from local support groups were involved in helping our researchers refine the topics and questions, and the questionnaire was piloted in 15 hospitals across England and Wales. Analysis of the results provided information on the performance of the new questionnaire. Qualitative feedback was also received from participating hospitals and steering groups and a version for the main audit was finalised.
- A sample of the carer questionnaire is available for download from the National Audit of Dementia.
- A report on the development of the questionnaire was submitted to the Royal College of Psychiatrists, January 2016.
- A systematic review is being prepared for publication.
Research title: Imperial College Healthcare EXPECT Project (Experience of patients and equality of care in the Trust) Patient experience study - walk-in sexual health
Research title: EXPECT: EXperience of Patients and Equality of Care in the Trust - experience of using the maternity service
HIV patient journeys
The aim of this study is to understand the journeys of people living with HIV in the era of changing treatment guidelines and care pathways. The context for the study was the mounting evidence of the benefits of antiretroviral medication as both treatment and prevention and the drive for universal access to, and engagement with, treatment and care as the key to ‘ending AIDS’.
It is qualitative study carried out in two large London HIV centres. We conducted in-depth semi-structured interviews with 53 patients attending the two clinics. The interviews explored the reasons why people choose to get tested, engage with, and remain in, care and start and continue to take medication. The participants were purposively sampled to provide a range of experiences of HIV care with a balance that included four generational strata reflecting the evolution of antiretroviral therapy and the diversity of ethnicity, gender and sexuality.
The stories provide a rich source of data concerning the patient experience of the treatment continuum, the specific experiences of changes in service provision and the changing experience of community support and care of Men who have sex with men (MSM) diagnosed positive.
Our initial findings regarding the treatment continuum show high levels of engagement in HIV services which reflect the strong relationships between patients and staff and the value patients place on the care provided. The participants’ experience of changes in the service is perceived as linked both to the transformation of HIV into a chronic condition and financial constraints within the NHS.
The narrative of positive MSM across the generations has highlighted the different experiences of those diagnosed in the pre-antiretroviral era to those newly diagnosed perceiving the level of support and care offered within the HIV services and the MSM community to have diminished. Coupled with the persistence of stigma and pejorative language used in social media participants reported a reluctance to disclose or to seek sexual partners.
Selected conference presentations and posters:
- “Patient Perspectives on the HIV Treatment Cascade in the UK” - presented at the World STI and HIV Congress 2015 and BHIVA Spring conference 2016
- ““Clean or Dirty” the changing experiences of care and support among MSM diagnosed HIV Positive” - presented at the 29th European Conference on Sexually Transmitted Infections and BHIVA Spring Conference 2016
- Abstracts (number 143 and 162) for the 22nd Annual Conference of the British HIV Association
- “Patient perspectives on the treatment cascade” at NHIVNA conference 2015
- Further presentations pending and journal articles are currently in preparation
Cancer patient journeys
Through our research, we aim to understand journeys from the perspective of different patients, through interviews with them and key people who accompany them – family, friends, professionals and other patients. We are interested in how experience changes over the course of treatment, the impact of research on this journey – both as participants in studies and through the introduction of new treatment protocols.
We have interviewed patients and key individuals and observed clinical settings and consultations. We have also used routine patient experience and clinical data to place our qualitative findings in context.
What have we found?
- Many women with breast cancer struggle to find a clear path; they embark along a clinical pathway with defined stages and timings, but more often than not their own journey deviates from this norm and sometimes they are left wondering where they are and what happens next.
- The large numbers of different staff involved in care, itself the result of increasing sub-specialisation, can make it difficult for the patient to feel secure in the knowledge that someone is looking out for them, or “thinking about me when I am not there”.
What have we done?
- We have engaged in service improvement initiatives, for example, an experience-based co-design approach in cancer outpatient services, pathway redesign for young women with breast cancer and the implementation and evaluation of nurse-led chemotherapy.
- We worked with the Helix centre on the evaluation of a new pathway planner that has been designed to help patients navigate their care.
- McGrath-Lone L, Day S and Ward H (2014) Understanding the journey of women with breast cancer (In process)
- Trenchard L, Mc Grath-Lone L, Ward H, 2016, Ethnic variation in cancer patients' ratings of information provision, communication and overall care., Ethn Health, Vol: 21, Pages: 515-533
- Mc Grath-Lone L, Day S, Schoenborn C, Ward H et al., 2015, Exploring research participation among cancer patients: analysis of a national survey and an in-depth interview study., BMC Cancer, Vol: 15, ISSN: 1471-2407
- McGrath-Lone L, Ward H, Schoenborn C, Day S et al., 2015, The effects of cancer research participation on patient experience: a mixed-methods analysis., Eur J Cancer Care (Engl)
Qualitative Sub-Study of TRED-HF
Dilated cardiomyopathy (DCM) is a condition where the heart muscle stretches, and the left ventrical becomes enlarged which can lead to heart failure. DCM presents differently in patients, with varying symptoms; severe DCM can result in a worsened quality of life and can be life limiting. No cure exists however, medical and device therapies can improve prognosis and symptoms. Some patients do not present any symptoms and frequently ask their clinical care team whether thay can stop taking or reduce their medication.
The ‘Therapy withdrawal in REcovered Dilated cardiomyopathy – Heart Failure’ (TRED-HF) feasibility study, led by Prof Sanjay Prasad and Dr Brian Halliday at the Royal Brompton Hospital & National Heart and Lung Institute (NHLI), Imperial College London was conducted to help address this patient need.
From 2016 to 2018, the TRED-HF trial recruited and followed up 51 people with recovered DCM. All were still on heart failure medications when they joined the study. They were randomly assigned to either:
Phased stopping or ‘withdrawal’ of their medication. The withdrawal was done gradually over 16 weeks. The trial team reduced the dose of one drug every 2 weeks until it was completely stopped, and then reduced the next drug/s in the same way.
Continuation of treatment. After 6 months, patients in the ‘continued treatment’ group also had their treatment withdrawn.
The study found that a 36% (95% CI 20.6, 57.8) rate of patient relapse following 6-months of treatment withdrawl and recommended that all participants continue taking medication until reliable predictors of relapse could be identified. Study results published here: https://pubmed.ncbi.nlm.nih.gov/30429050/
PERC researchers were involved in a qualitative sub-study (semi-structured interviews) with trial participants and staff undertaken in 2019. The team also involved a patient living with heart failure (& part of the Cardiovascular Lay Advisory Group at the Royal Brompton & Harefield NHS Foundation Trust) to help interpret and present the findings from the study. The result of this study are currently being written up for publication, with the initial findings presented at the 2021 Chronic Living conference.
The TRED-HF trial was supported by the British Heart Foundation [grant number FS/15/29/31492]; the Alexander Jansons Foundation; Cardiovascular Research Centre and NIHR Biomedical Research Unit at Royal Brompton Hospital and Imperial College; Imperial College Biomedical Research Centre; the Wellcome Trust [grant number 107469/Z/15/Z]; and Rosetrees Trust.
People Like You
PLY - People Like You
Members of the PERC team are working in collaboration with researchers at Goldsmiths University of London on the People Like You study about personalisation in healthcare.
Personalisation is changing many parts of contemporary life, from the way we shop and communicate to the kinds of public services we access. We are told that purchases, experiences, treatments, and interactions can all be customised to an optimum.
As a group of scientists, sociologists, anthropologists and artists, the People Like You team are exploring how personalisation actually works. What are optimum outcomes? Do personalising practices have unintended consequences?
The researchers argue that personalisation is not restricted to a single area of life and that personalised practices develop, interact and move between different sites and times. The project is split into four areas: personalised medicine and care; data science; digital cultures; interactive arts practices.
For more information see the People Like You project booklet.