IMPROVING THE PATIENT’S EXPERIENCE 2
COMMON THEMES from the literature
Marina Roberts and Marcus Longley
Welsh Institute for Health and Social Care | University of Glamorgan
December 2009
CONTENTS
Purpose ………………………………………………………………………………………. 2
Generic Issues
Department of Health, England ………………………….…………… 3
Wanless Report ……………………………………..……………………… 4
Picker Institute ……………………………………………………………... 5
Health Foundation ..………………………………………………………. 6
NHS Scotland ….…………………………………………………………….. 7
An International Perspective …………………..………………..…. 9
Signposts ..…………………………………………………………………... 11
Healthcare Standards for Wales …………………………………... 12
Particular Services
Primary Care .………………………………………………………..…….. 15
Hospital Care …………………………………………………………….... 18
Inpatient Care ………………………………………………………….….. 20
Accident and Emergency Services ……………………………….. 22
Nursing .……………………………………………………………………..….23
Patients from Black and Minority Ethnic Communities … 26
Cancer Services………………………………………………………….... 27
Children’s Services ..…………………………………………………... 28
Older Patients……………………………………………………………... 30
Mental Health Services..…………………………………………….… 31
Patients with Hearing Loss ………………………………………….. 36
Sight impaired patients……………………………………………….. 38
Maternity Services……………………………………………….………. 39
Diabetes Services……………………………………………………..…. 40
purpose
The term ‘patient experience’ has acquired considerable currency in recent years as a way of encapsulating the way the NHS addresses the totality of patients’ needs and preferences – including both clinical and non-clinical care. It therefore embraces everything from the success of clinical interventions to issues of access, responsiveness, choice, the state of the physical environment of care, and much else.
Improving the patient’s experience is a high priority for NHS Wales. A lot of research has been carried out across the UK on patients’ priorities in these various areas. A companion paper – Improving the Patient’s Experience: Patients Priorities for NHS Wales – reports the results of a recent exploratory exercise across Wales to find out what aspects of the experience patients themselves want improved.
In all of this work, it is clearly important to learn from what has already been discovered about patients’ priorities. Accordingly, this paper summarises 28 published sources of various types, as an introduction to some of this literature. The sources include generic studies of patients of all sorts, as well as studies which have focused on patients’ priorities in particular settings (e.g. primary care), and in relation to particular conditions or needs (e.g. older patients, mental health patients). In each case, the full reference is given (including web address where possible) to help the reader find out more about studies of particular relevance to them.
This is not a comprehensive review of the literature. Rather, it focuses primarily on work carried out in the UK since 2004. Editorial judgement has been applied to the studies reported here, on the basis of what is likely to be most useful for the intended readership: practitioners, managers and policy makers with an interest in improving the patient’s experience.
There are two companion papers in this series on improving the patient’s experience:
· Paper 1: Patients’ Priorities for the NHS in Wales reports the results of a consultation exercise with patients carried out across Wales in May 2009, which focused on top priorities for improvement from a patient’s perspective
· Paper 3: A Review of Patient Feedback Processes in the NHS in Wales describes the range of activities undertaken by NHS Trusts, Local Health Boards and Community Health Councils on a regular basis to understand what patients are experiencing from their contacts with the service, and what improvements they would like to see.
GENERIC ISSUES
DEPARTMENT OF HEALTH, ENGLAND
Background
During 2007 the Department of Health undertook work to develop the understanding of what matters to patients, the public and staff, with an aim of connecting the transformation of the NHS to these critical groups. It was considered that a better understanding needed to be allied with an improved ability to listen and respond. Being responsive nationally means using this insight to inform new policy and practices. Being responsive locally means having clarity about how to listen and respond to local needs. Although considered a work in progress with further development required, four key areas were identifiable as being important from the patient perspective.
Originator
Department of Health
Source
Department of Health (2007) What matters to patients, public and staff. London: Department of Health
Available at
http://www.dh.gov.uk/en/Publicationsandstatistics/Bulletins/theweek/DH_080355
Extract
What patients had to say
Get the basics right – don’t leave it to chance
- Ensure staff are competent
- Don’t lose my notes
- Keep the place clean
Fit in with my life – don’t force me to fit in with you
- make the service easy to access
- give me convenient options
- don’t waste my time
Treat me as a person – not a symptom
- listen to me and take me seriously
- understand the wider context of my condition
- treat me with respect and dignity
Work with me as a partner in my health – not just a recipient of care
- Encourage me to keep control of the process
- Equip me to look after my own health
- Give me the support I need
Improving the Patient’s Experience 2: Common Themes from the Literature
41
WANLESS REPORT
Background
Securing Our Future Health: Taking a Long-Term View, published in April 2002 is an independent review by Derek Wanless. It was the first evidence-based assessment of the long-term resource requirements for the NHS, and concluded that to meet people’s expectations and deliver the highest quality service over the next twenty years, the UK would need to devote more resources to health care and that this must be matched by reform to ensure the resources are used effectively. In the report Wanless identified five key patient values.
Originator
HM Treasury
Source
Wanless, D. (2002) Securing Our Future Health: taking a long term view. The Wanless Report. London: HM Treasury.
Available at:
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4009293
Extract
- safe, high-quality treatment
- fast access to services
- an integrated, joined-up service
- comfortable accommodation
- a patient-centred service.
PICKER INSTITUTE
Background
The Picker Institute works with patients, professionals and policy makers promoting understanding of the patient’s perspective at all levels of healthcare policy and practice. Their research has identified eight aspects of healthcare that patients consider most important, and nine areas that citizens consider most important.
Originator
Picker Institute Europe
Source
Levy, DAL. (2008) An independent NHS: what's in it for patients and citizens? Oxford: Picker Institute Europe
Available at:
http://www.pickereurope.org/Filestore/Publications/Picker_Independent_NHS_Lo_web.pdf
Extract
From this and other research the Picker Institute has described eight ‘domains’ of care which are of the highest priority for patients:
- Fast access to reliable health advice
- Effective treatment delivered by trusted professionals
- Involvement in decisions and respect for preferences
- Clear, comprehensible information and support for self-care
- Attention to physical and environmental needs
- Emotional support, empathy and respect
- Involvement of, and support for, family and carers
- Continuity of care and smooth transition
What citizens want
- Affordable treatment and care, free at the point of use
- Safety and quality
- Health protection and disease prevention
- Accessible local services and national centres of excellence
- Universal coverage; geographical and social equity
- Responsiveness, flexibility, and choice
- Participation in service developments
- Transparency, accountability, and opportunity to influence policy decisions
. . . . . A distinction can be made between what patients want as individual healthcare users and what they hope for as citizens or taxpayers. In general, patients care more about the quality of their everyday interactions with health professionals than about how the service is organised. Furthermore, although there is scope for improvement in primary care, changes that seem to undermine the founding principles of the NHS are likely to be strongly resisted . . .
HEALTH FOUNDATION
Background
The Health Foundation’s work in a broad sense examines quality of care. The extract below however is taken from a report that aims to focus on one key aspect of quality of care; that of patient and public experience. It looks at how responsive the NHS is to the needs and wants of patients by analysing survey data from a wide range of sources, and the public. It also assesses the extent to which the ‘patient-centredness’ policy goal has been attained.
Originator
The Health Foundation
Source
Leatherman, S., Sutherland, K. (2007) Quest for Quality and Improved Performance: Patient & Public Experience in the NHS. London: The Health Foundation.
Available at:
http://www.health.org.uk/publications/research_reports/patient_and_public.html
Extract
The main sections concern two key questions: what is important to patients and the public, and what do patients want? Data analysis shows that patients and the public prioritise:
- information, communication and involvement in decision-making about care
- being treated as an individual
- choice where it makes a difference
- predictable and convenient access
- equitable care and health outcomes
- being safe and protected in healthcare settings.
Findings
The report identifies several key areas that could be improved to help the NHS become a truly patient-centred institution:
- better provision of information to and communication with patients
- engagement of the patient in shared decision-making about treatment options
- geographic convenience and ease of transport to health services
- improvements in patient safety.
NHS SCOTLAND
Background
In May 2005, the Scottish Government produced a report that recognised the need for Scotland to adapt a whole system approach to improving healthcare. One of the crucial issues that were felt would impact on the shape of NHS Scotland was ‘What do patients expect from services?’
Originator
The Scottish Government
Source
Building a health service fit for the future, Volume 2: A guide for the NHS. May 2005. Edinburgh: The Scottish Government
Available at:
http://www.scotland.gov.uk/Publications/2005/05/23141500/15057
Extract
Patients will demand safe, high-quality treatment with minimum variation across the country, and will want to be active partners, rather than passive recipients, in their care. They are likely to value 'high-tech', proactive services delivered by staff who are at their best. They will be reluctant to wait and will expect the service to be more joined up. If they have to go into hospital, they will expect higher-quality accommodation and food.
They will want services that are tailored to their needs and which meet the best standards of customer care found elsewhere. In healthcare terms, that might mean quicker access to a health professional at convenient times. Current waiting times for diagnosis and elective treatment are unlikely to be acceptable. The health service will have to be quicker, sharper and smarter at the point of delivery.
The analysis above is supported by work done by the Picker Institute, a UK-registered charity that works extensively with European healthcare providers to obtain feedback from patients and promote patient-centred care. In its 2003 study, 'The European Patient of the Future', the Institute found that 'people want better access to health care, better communication with doctors and greater participation in clinical decisions affecting their own health care' (Coulter and Magee, 2003).
The study also showed that people felt that as citizens, they should be able to help shape health policy, and that their views on priorities should be listened to by policy makers. Again, this chimes with the feedback that the National Framework team received at their public meetings.
Into the future
Recent work on how wider trends in society and customer experiences in other sectors might impact on the healthcare sector suggests that in 20 years time, patients may be very different. The research indicated that in future patients will:
- be better informed
- be more educated
- not have enough time to get things done
- be more affluent
- be less deferential to authority and professionals
- have more source against which to compare the health service
- want more control and more choice - they will reject 'one size fits all' services.
AN INTERNATIONAL PERSPECTIVE
Background
The International Alliance of Patients' Organizations (IAPO) is a global alliance representing patients of all nationalities across all disease areas and promoting patient-centred healthcare around the world. Its full members are patients' organisations who work at the international, regional, national and local levels to represent and support patients, their families and carers. IAPO's vision is that patients throughout the world are at the centre of healthcare. In 2006 they released the results of a new survey on perceptions of healthcare among patient organisation members in ten European Union Member States, Canada and Nigeria. Participating members demonstrated strongly shared views on the needs and concerns relating to currently administered healthcare signalling a need for a shift to a more patient-centred approach. The study randomly polled 1,200 members of patient organisations in the twelve countries. It identified three recurring themes in the findings across the different regions that served to illustrate shared concerns related to the accessibility of individualised treatment and healthcare information.
The findings were presented by IAPO at the international conference, Geneva Forum: Towards Global Access to Health.
Originator
International Alliance of Patients' Organizations (IAPO)
Source
Available at
http://www.onmedica.com/newsArticle.aspx?id=1a78f1ad-69f8-4868-bc5c-5d9ea3164921
Extract
Timely access to the best treatment and information
Timely access to the best medicines and information is one of the primary concerns of patients and patients' organisations. 98% of respondents agree that "because timing is so important in the prevention of disease, access to the most effective medicines when you need them most is essential". The same percentage agrees on the need for greater access to accurate, relevant and comprehensive information to help patients and healthcare providers make informed decisions.
Right to participate in decisions at the individual patient level
The findings also show that 95% of members of patients' organisations demand a right to participate as partners in making healthcare decisions which affect their lives. The same proportion of members agrees that patients have a fundamental right to patient-centred healthcare that respects their individual needs, preferences and values. They think that unburdening bureaucratic restrictions on physicians would allow for a stronger physician-patient relationship and result in the best treatment for each individual. 89% of them argue that assuming a 'one size fits all' attitude to medicines is wrong, since patients react differently to medications depending on many factors, including their health status, age, and physical make up. Doctors are trained to assess all these factors and make the best decision for each individual patient.