Contextual inquiry - how to do it

Contextual inquiry [Guidance]
UK Health Security Agency 19 October 2021

• How to use a contextual inquiry when developing a digital health product. Contextual inquiry investigates how potential users interact with their natural environment rather than just focusing on the digital product. Contextual inquiry involves in-depth granular exploration of a small sample of people.
• Part of the Evaluating digital health products collection

Understanding integration: how to listen and learn from people and communities

Understanding integration: how to listen and learn from people and communities
Kings Fund 21 July 2021

• People’s experiences of health and care services are usually collected and understood at the level of individual providers but this does not give an understanding about whether these services are working well together to meet people’s needs. This guide, produced by Kings Fund, Picker and NHS England/Improvement, is a practical guide for partners working in these systems, with ideas on how they might go about this.

Health and Care Experience Profiles

Health and Care Experience Profiles: Understanding how services work together
Healthwatch 17 June 2021

• Healthwatch has developed a qualitative research methodology – the Integration Index - that local health and care systems can use to better understand people’s experiences using integrated services. The more comprehensive Integration Index work will form part of the developing accountability and performance frameworks for Integrated Care Systems (ICS). Using various quantitative tools, ICS can track how integrated care is delivered against Long Term Plan commitments. 
• However, to understand whether integration improves people’s experiences in different communities Healthwatch has published a methodology for the local integration index that ensures people’s experiences inform how services work together by reviewing existing policies and data while measuring how patients, service users and carers think local services provide joined-up and personalised care. This methodology will sit alongside other quantitative tools for use by ICS. 
• A number of pilots have developed Health and Care Experience Profiles for five groups. The profiles piloted so far are:
• Children and young people with mental health support needs who are becoming adults.
• People with diabetes who are of South Asian origin.
• People with learning disabilities and their unpaid/family carer, with a recent experience of hospital discharge.
• Black men with a number of health needs including a recent experience of cancer.
• Women with a number of health needs including a recent experience of a heart condition.

NHS Administration - patient expereince

Admin matters: the impact of NHS administration on patient care
Kings Fund 24 June 2021

• NHS Administration from the patient perspective and how it affects quality of care. A long read which looks at patient and staff perspectives on what it is like to use NHS admin to understand the impact it can have and where there are opportunities for improvement.

Paper Works: the critical role of administration in quality care
National Voices June 2021

• This report examines the experiences of people who have found administrative problems in the NHS have reduced their ability to access quality care.

Experience of children and young people cared for in mental health, learning disability and autism inpatient settings - a review

Experience of children and young people cared for in mental health, learning disability and autism inpatient settings
NIHR Themed Review 9 June 2021 doi: 10.3310/themedreview_46186

• This Themed Review explores the experience of young people with mental health problems, learning disability or autism in specialist inpatient mental health care. It asks three key questions about young people’s inpatient experience:
• What are the key influences?
• What is the best way to gain insight?
• How can new understanding be used to improve inpatient care?

Using patient experience to run a hospital

Using patient experience to run a hospital
BMJ 2021; 372 :n755 doi:10.1136/bmj.n755

• An interview with Annie Laverty who holds board responsibility for improving staff and patient experience at Northumbria Healthcare NHS Foundation Trust.

Securing a positive health care technology legacy from COVID-19

Securing a positive health care technology legacy from COVID-19
Health Foundation 16 March 2021

• This long read explores the challenges of implementing health care technologies and investigates patient and staff experiences of technology during the first phase of the coronavirus (COVID-19) pandemic. It draws on learning from the Health Foundation’s programmes and YouGov surveys of over 4,000 UK adults and over 1,000 NHS staff conducted in October 2020.

Digital Health During the Covid-19 Pandemic: Learning Lessons to Maintain Momentum

Digital Health During the Covid-19 Pandemic: Learning Lessons to Maintain Momentum
Patient Coalition for AI, Data and Digital Tech in Health January 2021

• This report focuses on shedding light on the patient experience of digital health technologies. It draws on in-depth research, a new patient survey and a collection of case studies of good practice in digital health technology to provide useful insights and policy recommendations.

Inadmissible evidence - patient feedback

Inadmissible Evidence
The Patient Experience Library 4 November 2020

• This report asks why healthcare seems unable to accept patient feedback as a valid form of evidence. The report points to a double standard which takes medical research seriously, while dismissing the experiences of patients as "anecdotal".

Patients in waiting

Patients in waiting
Patient Experience Library 27 October 2020

• A review of evidence around the experience of patients on hospital waiting lists. The research shows that patients' journeys through the system are characterised by waiting/delays before the clock officially starts; stop-starts along the way; cancellations; changing goal posts and reversals, which patients simply did not understand. The report points to opportunities to improve the experience of waiting. 

Patient Experience Platform (PEP)

The Patient Experience Platform (PEP) https://www.pephealth.ai/
PEP Health automates and accelerates the understanding of patients’ experience:

• Collects, listens to and understands what patients say about their care from across social media and online review platforms to create an empowered patient voice.
• Aggregates the millions of patient comments to each provider and creates a real-time score that is an accurate predictor of CQC inspection rating.
• All hospitals across the UK have their comments automatically collected since 2017 generating a range of benchmarking insights as well as quantifying variation in care from the point of view of the patients, their families and carers.
• Identifies many patient-safety issues that patients experience.
• The eight domains are: fast access to healthcare; unscheduled (emergency and urgent) care; maternity; oncology (cancer care); effective treatment; appropriate environment; emotional support; and whether care would be recommended.

Related references:
Public satisfaction with NHS maternity and A&E soars during pandemic HSJ 21 October 2020 (Subscription required)
Analysis based on the PEP tool.

Wisdom of patients: predicting the quality of care using aggregated patient feedback
BMJ Quality & Safety 2018;27:110-118.
Our Patient Voice Tracking System combines patient feedback from NHS Choices, Patient Opinion, Facebook and Twitter to form a near real-time collective judgement score for acute hospitals and trusts on any given date. Aggregating patient feedback increases the volume and diversity of patient-centred insights into the quality of care.

Patient-reported outcomes and experiences of digital health products

Guidance: Patient-reported outcomes and experiences study
PHE 19 October 2020

• How to use a patient-reported outcomes and experiences study to evaluate your digital health product.
• This guidance is part of a guide to evaluating digital health products.

Covid-19 experience: rapid review

Covid-19 experience: rapid review
Prepared for: Experience of Restart group (via National Voices)
Patient Experience Library October 2020

• This report has been prepared on the basis of discussion (hosted by National Voices) about patient/service users' experience of 'restart' of health and care services, following the coronavirus crisis and lockdown. The Patient Experience Library observed a rapid increase in reports of patient experience in relation to Covid - 19 during this time. Much of the literature looks at people's experiences of being suddenly unable to access services in normal ways. Some is negative, but there are positive reports too - for example, on easier online access for those who are comfortable with IT and with remote consultations. The literature as a whole will certainly hold clues as to what people want and need from restart. This rapid review offers an overview of the scale and nature of the literature, as a starting point for possible further research. 
• Search the Patient Experience Library for other reports on patient experience of COVID-19

What We Know Now - what people with health and care needs experienced during the first wave of COVID-19

What We Know Now - what people with health and care needs experienced during the first wave of COVID-19
National Voices 3 October 2020

• This rapid review report outlines what people with health and care needs are experiencing as a result of the pandemic, what they feel truly effective and just treatment should look like, and how services should be designed and delivered. 
• The report presents an analysis of the findings of surveys carried out during April-July 2020 by and on behalf of 11 health and care charities in England, which collectively reached at least 66,600 individuals with long-term health and care needs. Some effects are likely to be long-term; some compromised people’s independence and ability to self-manage their conditions; and some were potentially life-threatening.

London COVID-19 Deliberation Report

London COVID-19 Deliberation Report
NHS England/Improvement London Region September 2020

• Over six virtual workshops (18 hours in total) 60 Londoners deliberated in depth on the challenges and opportunities facing the NHS by the COVID-19 pandemic, supported by clinicians from across the NHS in London. The process, an inclusive approach which also involved people from marginalised communities and those worse hit by the pandemic, was supported by National Voices, Healthwatch and numerous advocacy groups. 
• The research has culminated in the development of Londoners’ expectations, a set of guiding statements that are not binding, but rather are intended to assist the NHS when making decisions about services during the next phase of the pandemic.

Patient Experience in England - summary of surveys

Patient Experience in England
Patient Experience Library 22 September 2020

• A summary of patient experience surveys carried out over the past year from a range of sources including CQC patient surveys, “Patient Voices” bodies eg healthWatch, National Voices, online feedback, and feedback gathered via complaints and compliments, PPGs etc.

British public’s experience of the Covid-19 pandemic

Wellcome Monitor 2020: Covid-19 Study
Wellcome, NatCen Social Research August 2020

• This report looks at findings around the British public’s experience of the Covid-19 pandemic and their views on health information during lockdown. It examines 
• people’s experiences of the coronavirus pandemic and lockdown restrictions
• trust in different sources of information, including scientists and government
• the clarity of information on staying safe and minimising risk
• the perceived effectiveness and uptake of prevention measures
• Summary: Anxiety, Confusion and Distrust: How BAME people in Britain have had a worse experience of the COVID-19 pandemic

Partnering with frail or seriously ill patients in research: a systematic review.

Partnering with frail or seriously ill patients in research: a systematic review.
Research Involvement and Engagement. 2020;6:52. 11 Sep 2020 . doi:10.1186/s40900-020-00225-2

• A systematic review of the evidence highlighted 30 studies which studied the engagement of frail and/or seriously ill patients as research partners. IT identified a range of barriers but concludes these can be mitigated when researchers ensure that the purpose of engagement is well-defined, the timing and methods of engagement are flexible, and the practical and emotional needs of patient partners are addressed throughout the process.

The black community and human rights

The black community and human rights
Joint Committee on Human Rights September 2020

• As part of the Joint Committee on Human Rights inquiry into Black people, racism and human rights, the committee commissioned research about black people’s experiences in the UK in relation to whether they feel their human rights are equally protected. The research found, among other things, that the majority of black people (more than 60 per cent) in the UK do not believe their health is as equally protected by the NHS compared with white people.

Babies in lockdown: listening to parents to build back better

Babies in lockdown: listening to parents to build back better

Best Beginnings 5 August 2020

• This report from Best Beginnings, together with Home-Start UK and the Parent-Infant Foundation, reveals the disproportionate impact of Covid-19 and subsequent measures on those pregnant, giving birth or at home with a baby or toddler. For generations, no other group of parents has had to navigate pregnancy, birth and beyond under such extraordinary circumstances. "The ramifications of the lockdown have been detrimental, and could cast a long shadow going forward for parents and babies alike."