Waiting lists are inevitable. It's how we manage them that matters.

Waiting lists are inevitable. It's how we manage them that matters.
Healthwatch 8 November 2021

• The COVID-19 pandemic has created a huge backlog of people waiting for a diagnostic test or treatment. Healthwatch have spoken to more than 2,500 people about their experiences, helping us to dig beneath the headlines and support the NHS to make good policy decisions on how best to manage waiting lists.
• The report discusses current waiting lists, cancellations, patient experience around waiting for care, interim support services and solutions. The report includes a number of recommendations.

Patient Coalition for AI, Data and Digital Tech in Health

Patient Coalition for AI, Data and Digital Tech in Health
Patients Association 15 September 2021

• A new coalition with members from Royal Colleges, health charities and patient groups has come together to ensure the interests of patients are at the heart of the development of policy in digital health technology. 
• In addition to providing a forum for discussion, this Coalition will act as an independent campaigning coalition, taking forward joint pieces of work and engaging actively to help influence Government and NHS policy on the use of digital technology in healthcare.

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.

Digital Health In The UK: National Attitudes And Behaviour Research

Digital Health In The UK: National Attitudes And Behaviour Research
ORCHA July 2021

• ORCHA commissioned independent research to ask people in the UK what they think of digital health, how they are using it, and if they want the NHS to provide it. It discusses use across the patient pathway (including variation by region and patient groups) and use of digital apps. The report finds that 65 per cent of respondents are in favour of using more technology such as health apps in order to help the NHS.

NHS Administration - the patient perspective

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.

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.

Does prevention-focused integration lead to the triple aim? An evaluation of two new care models in England

Does prevention-focused integration lead to the triple aim? An evaluation of two new care models in England.
J Health Serv Res Policy. 2021 Apr;26(2):125-132. doi: 10.1177/1355819620963500.

• This study examined two of the Vanguard programme new models of integrated care (Salford and South Somerset). Patient experience, health status and hospital episode data were used to calculate cost per user of secondary care (severity); avoidable emergency admissions; and primary care utilisation. Both intervention sites showed an increase in total costs of secondary care (approximately £74 per registered patient per year in Salford, £45 in South Somerset) and cost per user of secondary care (£130–138 per person per year). There were no statistically significant effects on health status or patient experience of care.

Ethnic diversity in fertility treatment 2018

Ethnic diversity in fertility treatment 2018
Human Fertilisation and Embryology Authority (HFEA) March 2021

• This report looks at how access to, and outcomes of, fertility treatment differed by ethnic group between 2014 and 2018. It finds disparities in the experience of patients from ethnic minority backgrounds and makes recommendations for the HFEA, fertility clinics and commissioners to help better understand the root of these inequalities so that action can be taken to improve access and outcomes for ethnic minority groups.

Sociodemographic inequalities in patients' experiences of primary care between 2011 and 2017.

Sociodemographic inequalities in patients' experiences of primary care: an analysis of the General Practice Patient Survey in England between 2011 and 2017.
J Health Serv Res Policy. 2021 Jan 31:1355819620986814. doi: 10.1177/1355819620986814.

• Using data from the General Practice Patient Survey in England this study sought to trace variations in primary care experience over recent year. It considered inequalities in relation to age, sex, deprivation, ethnicity, sexual orientation and geographical region across five dimensions of patient experience of primary care. It concludes that there have been few substantial changes in inequalities in patient experience of primary care between 2011 and 2017.

Vaccination - why hesitate?

Vaccination - why hesitate?
Patient Experience Library 18 January 2021

• How individuals' vaccination beliefs and behaviours are formed and where the opportunities lie to intervene in the interests of public health.

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".

590 people’s stories of hospital during Covid-19

590 people’s stories of hospital during Covid-19
HealthWatch 27 October 2020

• In partnership with British Red Cross, this report reviews the experiences of 590 people after being discharged from hospital. The research shows significant numbers of people are not receiving follow-up support under the new policy to switch to a ‘discharge to assess’ model introduced in March 2020 to cope with demand at the peak of the Covid-19 pandemic, leading to unmet needs. It calls on the NHS to address these issues coming into the busy winter period amid growing pressures of a second Covid-19 wave.

Patient-reported outcomes and experiences in 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.
• Part of the PHE guide to evaluating digital health products

Patient Experience in England

Patient Experience in England 2020 
Patient Experience Library October 2020

• An annual overview of the evidence base, drawing on surveys and research from government bodies, health charities and academic institutions. The evidence is broken down into manageable chunks, and research findings are grouped under key themes for ease of understanding.

Pandemic Patient Experience

Pandemic Patient Experience
Patients Association 21 September 2020

• The Patients Association wanted to get a better understanding of how patients experienced the Covid-19 pandemic. This is a report based on the findings from a survey asking for experiences of health and care services, and the experience of daily life. The survey had four sections: managing and accessing care for existing health condition(s); experience of treatment and care for Covid-19; experience of end of life care and bereavement support; and experience of services under lockdown overall.

Preparing for a challenging winter 2020/21

Preparing for a challenging winter 2020/21
Academy of Medical Sciences 14 July 2020

• Combined with the disruption already created in the health service by COVID-19, a backlog of patients needing NHS assessment and treatment, and the possibility of a flu epidemic, a potential new wave of coronavirus infections poses a serious risk to health in the UK. This report describes preparation required to address this. 
• The Academy has also released a ‘Peoples perspective’ report, written by patients and carers that calls for these actions to be developed through engagement with patients, carers and the public to ensure services, guidelines and communications work for people, rather than focusing plans on individual medical conditions.

First report of the Patients Association’s patient experience programme

Being a patient
Patients Association 6 July 2020

• The first report of the Patients Association’s patient experience programme suggests that it is time for a fresh look at patient experience.

Nothing about us without us: Five principles for the next phase of the Covid-19 response

Nothing about us without us: Five principles for the next phase of the Covid-19 response
National Voices June 2020

• "Decision makers must engage with those citizens most affected by both the virus and lockdown restrictions and understand how lives are lived by those who have underlying conditions." National Voices, a coalition of health and care charities in England, have developed five principles to underpin and test any policy change.
• 1. Actively engage with those most impacted by the change
• 2. Make everyone matter, leave no-one behind
• 3. Confront inequality head-on
• 4. Recognise people, not categories, by strengthening personalised care
• 5. Value health, care and support equally

HealthWatch National Reports Library

HealthWatch National Reports Library

• A database of all HealthWatch publications about health and care services.

Mobile phones for targeted communication withclients, patients and the public:implementation considerations

Mobile phones for targeted communication with clients, patients and the public: implementation considerations
Cochrane Norway/EPOC March 2020

• Questions for implementers when implementing mHealth strategies taken from a recent Cochrane Review of qualitative research explored how clients, patients, and the public view and experience targeted communication by mobile phone. Includes issues around access and content.
• Includes studies that had been published up to July 2017.This review is among a series of systematic reviews informing the WHO guidelines on digital interventions for health system strengthening (https://bit.ly/2U7BXT6 )

Summary here: Mobile phones for health workers in primary care: implementation considerations
Cochrane EPOC, March 2020