Listening to and working with people and communities has been and continues to be described in a variety of different ways.
People use many different terms to describe this area of work and don’t always agree about the exact meaning of them and how they are different to each other. Many of the terms – particularly engagement, participation, and involvement – are used interchangeably. This can be confusing, and it could be argued that this has slowed progress at times.
We will not attempt to provide definitive definitions for the terms listed above. Both the literature and their usage in practice demonstrates this is not possible to do. Instead, best practice shows that systems should be using a range of different approaches and methods to listen and learn from people and communities. Rather than focusing on definitions, any work with people and communities should be judged by the intent and commitment behind it and what is done as a result, rather than the term used to describe it.
Why do services need to listen?
Those best placed to know what will make a difference to their lives, what is working for them and what could be improved in the services they access, are the people and communities that health and care systems serve.
Working with people and communities can ensure that strategies aimed at improving population health will make a difference to people’s lives. Co-designing new services means that services are much more likely to be effective and sustainable. Services can address inequalities by hearing from those with poorer health outcomes, learning and understanding the context of people’s lives – including the wider social determinants of health – and what the barriers to better health might be.
People’s insight into the services they use and what they need across the NHS and local government can support many important activities within health and care. This insight is used to support regulation and assurance that services are providing good quality care. For example, data from surveys and other user feedback is a key part of the Care Quality Commission’s (CQC) inspections of providers. Data from user surveys can also highlight differences between population groups so inequalities in care provision can be identified and addressed.
User experience is a key component of quality improvement, where patient feedback can identify areas that need improving and how they could be improved. There is a strong link between people having positive experiences of care and other aspects of quality, including clinical effectiveness and patient safety (Doyle et al 2013).
Commissioners, local authorities, NHS trusts, NHS foundation trusts and NHS England all have legal duties to consult or otherwise involve the public when changes to service provision are proposed.
Different ways to hear from people and communities
People’s insight and feedback about their experiences of the health and care system are gathered in a wide range of ways, and there is no one-size-fits-all approach. Instead, listening to people and communities using a combination of methods, both quantitative and qualitative, can build a more comprehensive picture of people’s lives, what matters to them, how they think services should be delivered and their experiences of care. Choosing which approach to take depends on who is being asked and what the resulting work will be used for.
Quantitative methods, such as patient or user surveys, allow systems to generate numerical data to determine how people are experiencing services. They can be used to understand how people use services and whether they are satisfied with their care. Quantitative data can be used to measure changes in user experience over time and whether there are different experiences between groups in the population.
Qualitative methods, such as interviews, group discussions or user stories, provide more detailed insights into people’s care; what went well and what could be improved. Qualitative work allows more in-depth understanding of what matters to people and communities and what they need from services. When used alongside quantitative data, qualitative methods can provide meaning behind the numbers.
Before embarking on a new piece of work it is important to determine what data is available at national and local level to avoid duplication and build on what is already known.
Existing data sources
Data from people and communities is collected at national and local level. Below we highlight some of the ways both the NHS and local government in England currently hear from people and communities. The list below is not comprehensive but does provide an overview of current data sources.
Nationally commissioned patient and user experience surveys
National bodies commission several large-scale surveys to measure the experience of the people (and their carers) using health and care services. These surveys provide data on variation between different areas and different groups in the population. They can be used for regulation, as well as, at a local level, for planning and commissioning services. Some measure people’s experiences of specific services, including general practice, inpatient care, urgent and emergency care, and adult social care. Other surveys, such as the Cancer Patient Experience Survey and the Maternity Survey, measure experiences across pathways of care. Most of these surveys capture the views of adults, but recently surveys have been developed to capture the views of children and young people (the Under 16 Cancer Patient Experience Survey and the Children and Young People’s Patient Experience Survey). They provide a rich source of insight both nationally and locally into what is happening to people using services – gathering the combined views of around 1.5 million people annually.
The Friends and Family Test
Although it is commissioned locally, the Friends and Family Test (FFT) is a nationally mandated data collection. People provide feedback on their experiences of accessing services across community care, acute care, mental health, maternity, general practice (suspended during the Covid-19 pandemic), dental practice, emergency care and patient transport. The data is not comparable between providers but, unlike national surveys that have a delay between collection and dissemination, the FFT provides close to real-time feedback and is a useful local service improvement tool. There are about 14 million responses to the FFT each year.
Patient-reported outcome measures
Patient-reported outcome measures (PROMS) are questionnaires that measure patients’ views of their health status or health-related quality of life at a specific point in time, rather than their experience of a service or care pathway. In simple terms, they ask users of services whether they feel better as a result of their treatment. There are several national PROM collections, focusing on the outcomes of elective inpatient hip and knee surgery, and on the quality of life of people diagnosed with breast, bowel or prostate cancer.
Healthwatch engages with and gathers feedback from people using health and care services at both local and national level.
Local Healthwatch teams seek feedback from people using all NHS and social care services, from GPs to care homes, to ensure people’s insight is used to improve health and care support. There are more than 150 Healthwatch teams across England that actively engage with local populations to listen to issues that matter to the community and feed this back to local government and NHS organisations.
Healthwatch England uses the collective views and experiences gathered through the local Healthwatch network to develop national level insights. The Healthwatch Reports Library also catalogues insight reports on the whole breath of health and care services, from patient experience in A&E to public views on use of medical records for research. Collectively the reports bring together the views and experiences of almost 1 million people across England.
Hearing from people and communities at a local level
Local government and the NHS collect a large amount of insight at a local level. Service providers and commissioners use a range of techniques, both qualitative and quantitative, to hear from the people they serve, including:
- residents’ surveys
- user surveys
- citizen panels and assemblies
- focus groups
- ethnography or observational techniques
- user stories
Local government has a strong history of building relationships with the public and generating important insight into how people experience the services it delivers. Even where there is no legal duty to involve the public, consultation is a principle that is embedded into the process. The move to ICSs, discussed in more detail below, provides an opportunity for the NHS and local government to come together on how to listen and learn from the people and communities’ full experience across the health and care system. Local government holds key insight on how people and communities experience the wider determinants of health across housing, education and transport.
Patient Advice and Liaison Service
Existing local forums such as the Patient Advice and Liaison Service (PALS) offer routes for people to give feedback about their experiences. PALSs offer advice and support on health-related matters, as well as helping to improve health services by listening to concerns and suggestions.
Patient participation groups
Patient participation groups (PPGs) are groups of volunteers that work in partnership with GP practices to facilitate discussions with the patient population to help the practice provide proactive services that reflect the needs of its local population. It is a contractual requirement for practices to establish a PPG and ensure efforts are made to ensure it is representative of the practice population.
Voluntary, community and social enterprise groups
The voluntary, community and social enterprise (VCSE) sector offers a wealth of knowledge about experiences of care from different community groups. By looking into existing forums where insight is already being collected, the health and care system can better join up the knowledge and understanding of its populations, avoid duplication and identify potential gaps in understanding.
Complaints and compliments
Complaints and compliments can be used to understand the experiences of those using services and can be a valuable tool to identify both what could be improved but also what went well (de Silva 2013). People can formally complain about both NHS and social care services, and providers should be using what they learn from complaints for improvement. There are other ways people can provide spontaneous feedback whether positive or negative. This can be collected on a smaller scale, eg, in a hospital ward setting or in a care home, or on a larger scale, eg, through forums such as NHS.uk and Care Opinion.
Hearing from all voices
Across the different approaches to gathering people’s insight, if the health and care system only hears from those who are already engaged, there is a risk that health inequalities will be exacerbated. There are many communities that might not be reached through traditional methods, such as surveys or workshops, but can be reached using other community-led approaches or through VCSE organisations. Covid-19 has reinforced how important it is to think creatively about how to reach different communities. For example, the community champion programme in Newham succeeded in reaching communities that have not always been engaged with, to understand not only people’s experiences of care, but what matters to the community most and to understand any barriers to care.
What could system changes mean for this agenda?
Much of the activity around listening to people and communities described above takes place at the level of individual providers (Wellings 2019). The establishment of ICSs will mean a more unified approach is needed to listen to and learn from people and communities. Given that many of the challenges people face when accessing care are because services do not always work well together to meet their needs, new ways of collecting and understanding will be needed to understand whether integrated care is working. Within ICSs, partners will need to listen and learn together to understand experiences of pathways and co-ordination rather than views and experiences of individual services, as outlined in The King’s Fund’s work on understanding integration and Healthwatch England’s Health and Care Experience Profiles.
Recent guidance published by NHS England outlines how ICSs will be expected to work with people and communities. This guidance sets out 10 principles for integrated care boards (ICBs) to develop their approaches for working with people and communities asking partners to ‘put the voices of people and communities at the centre of decision-making and governance, at every level of the ICS’. The guidance stresses that the insights and diverse thinking of people and communities are essential to enable ICSs to tackle health inequalities and the other challenges faced by health and care systems.
At the time of writing, a new survey is being developed to measure people’s experience of integrated care. While it will be nationally co-ordinated, the survey will collect data at a local level from specific population groups, their carers and frontline staff to hear about the care and support they receive from several different health and care services.
This explainer illustrates the wide range of ways the health and care system can hear from the people and communities it serves. However, hearing from people is only the start; the system needs to listen to and act on what it learns. The insight from all these sources means nothing if nothing is done. There is a significant opportunity to do more and place the voices of people and communities at the heart of health and care.
Spent two weeks writing to organisations to find some help. The help is around mental health and self employment and the barriers to becoming self employed (starting a social enterprise) " Understanding
self-employment for people with disabilities and health conditions" has the aim of having more disabled people self employed by 2027, my experience that there is help for people becoming employees and help for employers of the disabled.
So far my results have been utter silence, not unusual, or 'we do not ...' This approach leads to 'I'm not being listened to' - a great start for another bout of depression and 'why bother'
Yrs not being listened to
Your examples largely involve NHS bodies reaching out to communities according to what those bodies think they ought to get views on. It's also important for communities for there to be transparency in the shape of published, up-to-date information made readily available (in digestible form) so we can know what is happening and choose to feed back to NHS bodies on issues we want to have a say on or think we can contribute to. I wish I could have more confidence that ICSs will deliver on the NHSE ICS implementation guidance on working with people and communities: "Consider how place-based partnerships can support co-production and the accountability and transparency of the system" - and, for me, that involves more than simply putting impenetrable meeting documents on a webpage without any public-friendly summary and minimal publicity, or producing occasional glossies extolling latest achievements.
A contents page containing the title would be great, because you can then print off one page, know what the report is about, see its contents at a glance and you have a ready reference to hand when you need to come back to it.
These are some good ideas. There are a couple of areas that are often left out. One is the potential role of employers, who I think have a strong potential role in system improvement, especially in how they deploy occupational health systems to trigger prevention and early treatment. Another area that is often left out concerns the large numbers of people in institutional settings, such as prisons. There is a high proportion of people with long term health conditions in the prison population and they rarely get to have their say in what would help improve health and wellbeing. There is also a need for support for their families and their involvement in how care is delivered and developed, both while prisoners are in prison and even more so through transition to release
You have not mentioned FT hospital governors, who can also provide opinions on hospital services. Most governors are elected and therefore represent their community.
Changes can only come about with knowledge of the subject matter in question, and the will to make a difference. Too many organization involved in the complaints process, the length of time it takes to get through the first stage, could take months, only to find you are out of 'TIME' when you reach your final destination! Not enough thought is given to those working on the 'coal face' who have gained so much experience:- instead rely on Academics who rely on DATA. The 'Winterborne Tragedy' in 2012 is an EXAMPLE; Promises were made;- no autistic or learning disabilities individuals would spend their lives 'Locked' up, in 2022 we hear of an autistic man in isolation for over 20 years? where was the CQC? where was anyone? don't forget the treatment Carers receive should they dare complain about the system.