Resource hub

Human Experience 2030: A vision for the future of healthcare

The Beryl Institute published this Human Experience 2030 (HX2030) vision report, identifying six actions for elevating human experience over the next ten years for those receiving and delivering care. 

Improving childhood nutrition and wellness in South Africa

To supplement an ongoing local quality improvement (QI) intervention addressing poor nutritional outcomes in children, experience-based co-design (EBCD) was used to enhance previously low levels of mother, carer and staff engagement.

Reframing the work on patient experience improvement

This article that patient experience needs to be viewed as a primary goal in healthcare alongside other aspects such as quality and safety, rather than as an isolated aim.

Staff care: How to engage staff in the NHS and why it matters

Our inaugural report argues that caring about people working in healthcare is the key to developing a caring, compassionate health service. Moreover, it argues that supporting staff should be a central driver in improving patient care, productivity and financial performance.

A systematic review of evidence on the links between patient experience and clinical safety and effectiveness

This study shows that good experiences for patients are associated with better clinical outcomes and safer patient care.

Quality Time: Using EBCD to capture staff experience

In the Quality Time study, researchers investigated whether using experience-based co-design (EBCD) is an effective way to capture staff experience as a way to improve service design.

Shadowing patients at the end of life

The aim of this study was to explore the acceptability of patient shadowing for healthcare staff, the impact of the experience and subsequent motivations to make improvements.

“A new way to approach quality improvement”

Staff reflections on EBCD training to support quality improvement in neonatal departments

Visual identifier systems for patients with cognitive impairment in healthcare settings: A survey of practice in UK hospitals

Publication related to Phase 1 of the 'Developing a visual identification method for people with cognitive impairment in institutional settings' project with THIS institute.

Impact Report 2021

A report on the work of our programmes from 2021.

The impact of patient shadowing on service design

The impact of patient shadowing on service design: Insights from a family medicine clinic.

What is the potential of patient shadowing as a patient-centred method?

This paper argues that patient shadowing is an effective method for delivering patient-centred care.

A qualitative study exploring patient shadowing as a method to improve patient-centred care: 10 principles for a new gold standard

Impact Report 2022

A report on the work of our programmes from 2022.

Experience Based Co-Design training for staff at the KeepingWell NCL Hub

Experience Based Co-Design (EBCD) training was commissioned by KeepingWell North Central London (NCL) in 2022 to co-design an improvement approach for staff with Long COVID.

Cheshire and Merseyside ICP’s Children and Young People’s Transformation Programme

The Beyond transformation programme was established in April 2021. The ultimate purpose of this work was to ensure the voices of children, young people, parents and carers are heard and acted upon.

Foundations in Patient Experience Course: Impact of Training

An interview with Garry and Andrew – two alumni from our Foundations in Patient Experience course. Originally featured in our Impact Report 2022.

Patient Experience Training: Heart, Lung and Critical Care Clinical Group at Guy’s and St Thomas’ Hospitals

Originally featured in our Impact Report 2022

New Beginnings toolkit for maternity and neonatal care

This toolkit was developed from the experience based co-design (EBCD) ‘New Beginnings’ project by St George’s University Hospitals NHS Foundation Trust. This project explored ways services could be improved for women who have part of their birthing experience in an operating theatre.

Babies, Children and Young People’s Experience of Healthcare – NICE Guidelines

This guideline describes good patient experience for babies, children and young people, and makes recommendations on how it can be delivered.

Patient and Public Involvement trauma informed guidance for organisations and healthcare professionals

This guidance is intended for healthcare professionals, staff who work in patient experience roles, healthcare organisations, researchers and any others who interact with service users and their relatives who are giving insight and feedback through a patient and public involvement process.

Impact Report 2023

This report covers the work of our programmes throughout 2023.

Staff and patients. Improving networked care

This report describes the progress of the Moorfields Eye Hospital vanguard, which used tools from the Point of Care Foundation to embed patient and staff co-design into service design across the Moorfields network.

Beyond experiential knowledge: a classification of patient knowledge

A narrative review to challenge the model of knowledge in medicine and healthcare, and better understand the forms of knowledge that patients acquire during their care journeys.

PFCC programme report

This report describes the goals of the programme which ran with fifteen teams in 11 NHS organisations across England and Wales from January 2012 to November 2013.

Experience based co-design reduces formal complaints on an acute mental health ward

This study describes how experience based co-design (EBCD) was adapted for safe use within a mental health setting, resulting in formal service user and family complaints being eradicated for a period of 23 months.

Building the business case for patient-centered care

This article demonstrates that patient-centered care has the potential to produce safer and more cost-effective care.

Seeing the person in the patient

The report introduces current debates and dilemmas in relation to patients’ experience of care in hospital, presents our view of the factors that shape that experience, and assesses the evidence to support various interventions that are designed to tackle the problems.

Impact report 2019

How the Point of Care Foundation’s programmes support healthcare staff and patients

Using online patient feedback to improve care

A guide supporting clinical, patient experience and quality teams to understand how to use online patient feedback to improve quality in healthcare.

A brief introduction to the Point of Care Foundation

Jocelyn Cornwell gives a short introduction to the Point of Care Foundation.

Patients and staff as codesigners of healthcare services

This article describes how experience-based co-design can be used to ensure that healthcare organisations realise the full potential of patients—the biggest resource they have for improving the quality of care.

Reflections on ‘Living Well to the Very End’ programme

Seven short interviews with participants on the Point of Care Foundation's 'Living Well to the Very End' care quality improvement programme.

Using patient experience for improvement

A guide supporting clinical, patient experience and quality teams to draw on patient experience data to improve quality in healthcare

Best care for our mothers and fathers

This case study explores how the Royal Gwent Hospital in Newport, Wales used the patient and family centred care (PFCC) methodology to improve the quality of care for elderly patients admitted with a broken hip.

Dr Kieran Sweeney talks about his experiences as a cancer patient

Dr Kieran Sweeny talks about his experience of receiving a terminal diagnosis of cancer. Kieran notices that the staff appear hesitant to tell him directly that he is going to die, only finding out the truth when reading his discharge letter at home. Kieran reflects on possible reasons behind the care that he received.

Duchenne Muscular Dystrophy (DMD)

This case study explores how the Multidisciplinary Outpatient Review Clinic for Boys with DMD at Great Ormond Street Hospital for Children NHS Foundation Trust used the patient and family centred care (PFCC) methodology to improve patient experiences of the 3-4 hour long visit to the clinic.

EBCD: Experience-based co-design toolkit

The toolkit includes short videos from staff and patients involved in experience-based co-design (EBCD) projects to help bring to life the successes and intense rewards of running this type of improvement project.

Fundamentals of measurement for improvement

This resource identifies different types of measurement (measurement for accountability vs measurement for improvement), what data to use, and what makes for a successful measurement strategy.

How did you adapt the approach to people with learning disabilities?

In this video, Jane Parr talks about how Leicestershire Partnership NHS Trust adapted the Experience Based Co-Design methodology to be used within a learning disabilities care setting.

How did you approach the co-design joint event?

In this video, Jane Parr describes how she approached the co-design joint event for her Experience Based Co-Design project at Leicestershire Partnership NHS Trust.

How did you get the project off the ground?

In this video, Jane Parr talks Leicestershire Partnership NHS Trust got their Experience Based Co-Design project, 'My Care, My Voice', off the ground.

How did you organise your events?

In this video, Jane Parr shares how she organised her staff and patient events for her Experience Based Co-Design project at Leicestershire Partnership NHS Trust.

Involving people with learning disabilities – Leicestershire Partnership NHS Trust

A Learning Disabilities service in Leicester found that EBCD was the ideal way to bring together users, families and staff to share experiences of care and design and implement change.

Our impact: The Sweeney Programme

This report shows the difference our patient-focused quality improvement work makes to healthcare staff, patients and organisations

Measuring for improvement

These slides explore why it is important to focus on patients' and families' experiences, how to engage patients and staff with improvement, and how feedback can be used to improve outcomes. They look specifically at the achievements of Northumbria Healthcare NHS Foundation Trust.

PFCC: Patient and Family-Centred Care toolkit

This toolkit is a step-by-step guide to improving processes of care and staff–patient interactions. It offers a simple way for organisations to show their commitment to patients’ experience while also motivating the staff who deliver that care.

Driver diagrams

A driver diagram is a conceptual model that helps teams to identify an aim they want to achieve and then to align the relevant system components in order to support its achievement.

What made Experience Based Co-Design different from other approaches?

In this video, Jane Parr, who led an Experience Based Co-Design at Leicestershire Partnership NHS Trust, shares why she thinks Experience Based Co-Design (EBCD) is different from other approaches.

Understanding and improving the patient experience

This resource explores the challenges of measuring patient experience, how data should be collected and presented, what to measure, and how to make sense of qualitative data. It provides various infographics to relate its evidence and findings.

What changes have you made as a result of the project?

In this video, Jane Parr talks about the changes made at Leicestershire Partnership NHS Trust as a result of their learning disabilities Experience Based Co-Design project, 'My Care, My Voice'.

What made you decide to attend The Point of Care Foundation’s EBCD training?

In this video, Jane Parr explains what drew her to The Point of Care Foundation's unique co-design training - 'Experience Based Co-Design'.

17. No one is a blank slate: the importance of relationships in care

Episode 17 of the Humanising Health and Care podcast.

16. Community involvement in end-of-life care

Episode 16 of the Humanising Health and Care podcast.

15. How to use EBCD for quality improvement

Episode 15 of the Humanising Health and Care podcast.

14. Why do patients rebel?

Episode 14 of the Humanising Health and Care podcast.

13. Francis Report and the Point of Care Foundation

Episode 13 of the Humanising Health and Care podcast.

12. The paramedic’s tale: Carl Betts

Episode 12 of the Humanising Health and Care podcast.

11. The anaesthetist’s tale: Emma Evans, St George’s Hospital, Tooting

Episode 11 of the Humanising Health and Care podcast.

10. The Schwartz facilitator’s tale: Rebecca Myers

Episode 10 of the Humanising Health and Care podcast.

9. The GP’s tale: Martin Marshall, RCGP

Episode 9 of the Humanising Health and Care podcast.

8. The patient leader’s tale: Ceinwen Giles, Shine Cancer Support

Episode 8 of the Humanising Health and Care podcast.

7. The manager’s tale: Lisa Cooper, Alder Hey

Episode 7 of the Humanising Health and Care podcast.

6. Humanised care in mental health services

Episode 6 of the Humanising Health and Care podcast.

5. Why is medicine so… medical? Long-term conditions

Episode 5 of the Humanising Health and Care podcast.

4. What does humanising healthcare mean in the Neonatal Intensive Care Unit?

Episode 4 of the Humanising Health and Care podcast.

3. What does the experience of Covid teach us about humanising care?

Episode 3 of the Humanising Health and Care podcast.

2. Why is medicine so… medical? Death and dying

Episode 2 of the Humanising Health and Care podcast.

1. Because people, not bodies, suffer

The first episode of the Humanising Health and Care podcast.