1. Patient Experience Network Conference – 19 January 2011
Joan Saddler
National Director of Patient and Public Affairs, Department of Health

2. What do we mean by Patient Experience?
Patient experience = direct experience of specific aspects of treatment or care
Patient satisfaction = an evaluation of what happened, reporting the patient’s feelings about the experience of care, usually requiring patients to give an overall rating based on their whole service experience
Patient-reported outcome = patient’s perspective on whether a procedure improved quality of life
Patient-defined outcome = patients are involved in the definition and design of measures of the outcome of particular procedures or services
‘Patient Experience’, ‘Patient satisfaction’, ‘patient-reported outcomes’ and
‘patient-defined outcomes’ are all different concepts.

3. Factors contributing to patient-centred care at organisational level:
Leadership at Chief Executive and Board level
Strategic vision
Involvement of patients and families
Supportive work environment for staff
Systematic measurement and feedback
Quality of the built environment
Supportive technology
(Source: Shaller 2007)
Based on interviews with leaders of patient-centred organisations and initiatives in the US, Dale Shaller’s report identified seven key factors for achieving patient-centred care at the organisational level:
Leadership at CEO and Board level: sufficiently committed and engaged to unify and sustain the organization in a common mission.
2. Strategic vision: clearly and constantly communicated to every member of the organisation.
3. Involvement of patients and families: at multiple levels, not only in the care process but as full participants in ‘key committees’ throughout the organisation.
4. Supportive work environment for staff: which engages them in process design and treats them with the same dignity and respect that they are expected to show patients and families.
5. Systematic measurement and feedback: to continuously monitor the impact of specific interventions and change strategies.
6. Quality of the built environment: that provides a supportive and nurturing physical space and design for patients, families, and employees alike.
7. Supportive technology: facilitating information access for patients and communication with their caregivers.

4. Providing a good patient experience involves providing patient-centred care
A multitude of frameworks list ‘key domains of patient experience’ e.g. Institute of Medicine:
Compassion, empathy and responsiveness to needs, values and expressed preferences
Coordination and integration
Information, communication and education
Physical comfort
Emotional support, relieving fear and anxiety
Involvement of family and friends
(Institute of Medicine 2001)

5. Patient experience is also related to productivity and efficiency
Whilst not all improvement in patient experience saves money, evidence shows a link:
poor patient experience can be costly
poor doctor-patient communication and poor performance on patient surveys associated with higher litigation costs (US)
evidence of an association with excellent patient experience and market performance and financial health of providers (US)

6. Patient experience is closely related to and influences clinical effectiveness and safety
For example, research evidence tells us that:
Patient experience
Clinical effectiveness
Safety
Organisations that are more patient-centred have better clinical outcomes
Improved doctor-patient communication leads to greater compliance in taking medication and can enable greater self-management for people with long-term conditions
Individuals’ anxiety and fear can delay healing
In the quality triangle, Patient Experience is the ‘new kid on the block’ in terms of NHS focus. That said it has much further to go compared to clinical effectiveness and safety.
Understanding and improving patient experience is central to a more effective NHS. It does not exist in splendid isolation, we know that good patient experience can lead to better clinical outcomes.
Therefore it is a welcome development that we are here today to celebrate successes in Patient Experience.

7. Local Involvement Networks (LINks) Healthwatch
Feedback can be captured in a variety of ways, at different times, for different purposes
Key is getting the right balance - national, regional, local activity
Appropriately informing different decisions
Capturing views at the right point in the patient journey
Postal surveys
Quantitative
Telephone surveys
Face-to-face surveys
Hand-held technology
Regulation
On-line surveys
Comment cards
Contract
Management
Complaints
On-line communities
Compliments
Service
improvement
Bedside terminals
Citizens juries
Pay and
incentives
Service
improvement
PALs feedback
Feedback websites
Commissioning
Kiosks
There are a variety of ways in which patient experience feedback is gathered and how it influences different parts of the system.
Absolutely key is for patient experience feedback to be utilised for local service improvement, which in turn will improve the patient experience.
Methods for gathering this feedback range from qualitative methods such as patient stories, through to quantitative methods such as postal surveys.
Patient stories
Focus groups
Local
Accountability
Mystery shoppers
Public meetings
Local Involvement Networks (LINks) Healthwatch
Performance
Benchmarking
Walking the floor
New service
development
Qualitative
For illustrative purposes only

8. Improving patient experience is a long haul, not a quick fix
As much about cultural change as is it is about availability of data:
“Sustaining more substantial change is likely to require
organisational strategies, engaged leadership, cultural change, regular measurement and performance feedback, and experience of interpreting and using survey data.”
“Small measurable improvements in patient experience may be achieved over short projects.”
But we know that placing Patient Experience centre stages so it is part of the DNA of the NHS and to effect cultural change , it is going to take time.
Davies et al 2008

9. England has some of the most comprehensive patient survey programmes in the world – but further refinement and development is needed
Year
Survey
2007/08
Users of maternity services
Adult inpatients
PCT residents registered with GP
Users of community mental health services (CPA)
A&E/Emergency services
Personal Social Services Survey of Adults Receiving Community Equipment & Minor Adaptations
GP Patient Survey
2008/09
Ambulance (category C)
Mental health inpatients
Personal Social Services: Home Care Users Aged 65 or over, England
2009/10
Outpatient services
GP Patient Survey (now running as a quarterly survey)
We have extensive data on patient experience through:
national patient survey programme
GP Patient survey
Information on patient experience is much more limited in other areas
The main gaps are:
along whole pathways of care
in community services & social care
in services for specific clinical conditions
For national surveys, whilst we have some of the largest and most comprehensive survey programme in the world, we know there are significant gaps in how it supports improving patient experience. For example it tends to be setting specific, but patients experience is along the pathways of care.

10. Patient Experience Online Network
Learning from others:
Patient Experience Online Network
Vision
To share ideas and practice to drive improvement in patient experience.
To continually develop a network which connects and supports its members to exchange experience and knowledge
Membership
300+ patient experience professionals across NHS, UK and abroad.
Content
Policy and context
Tools and approaches
Connecting patient experience networks and professionals
30+ case studies from across NHS with links to others
Materials from National Patient Experience Learning Programme
We can learn from each other, as we are doing today, and I’d like to make a plug for the NHS Institute Patient Experience Learning Network which has a library of case studies. You will find the case studies for many of those which were considered for PEN awards on this site – it is a very rich resource to help disseminate examples of practice across the NHS 10

11. Outcomes Framework (domain 4 - ensuring people have a positive experience of care )
The NHS Outcomes framework, which was published on the 20th December 2010 following extensive consultation, reflects the importance of patient experience. Domain 4 of the O/F covers patient experience.
1.Preventing people from dying prematurely
2 Enhancing quality of life for people with long-term conditions
3.Helping people to recover from episodes of ill health or following injury
4.Ensuring that people have a positive experience of care
5.Treating and caring for people in a safe environment and protecting them from avoidable harm page 30
The indicators which follow the structure shown here will be used by the SoS to hold the NHS Commissioning Board to account:
An overarching outcome indicator will measure the overall progress of the NHS across the breadth of activity covered by the domain
A small number of specific improvement areas where the evidence suggests better outcomes are possible or areas that are identified as being particularly important to patients
Supporting Quality Standards developed by the National Institute for Health and Clinical Excellence (NICE) to help patients, clinicians and commissioners understand how to deliver better care.

12. Consultation feedback – some headline comments and views
Local measurement and ownership is key
A balance is required – local and national activity
Must avoid domain 4 becoming a ‘research’ and ‘tick-box’ industry
Staff will need support to assist them in their work to improve patient experience
Is different to other more clinically-orientated indicators - success on one may not always mean success in the others
Focus on general public, not just recent service users
Need to make sure vulnerable patients and those who are excluded, hard to reach or seldom heard are fully included
The approach adopted needs to be evidence based, well designed, be simple and easy for the NHS to implement and people to take part in.
The Outcomes Framework consultation yielded a whole range of issues and concerns, which the published framework aims to address.

13. Framework for 2011-12 Indicator to be developed Available
The framework details a range of specific indicators and future development requirements to take forward patient experience. I wont cover these in detail, but it covers a comprehensive range of services and settings, for which much development work is required.
Where it says 'indicator to be developed' - this means the survey instrument to gather the data is available but that we need to decide what the actual indicator will comprise of ( i.e. the numerator and denominator ) .
Where it says 'survey to be developed' - this means that it will take longer to achieve since the fundamental survey itself needs to be developed.
Survey to be developed
Indicator to be developed
Survey to be developed

14. The role of NICE Quality Standards?
A bridge between outcomes and the structures and processes of care needed to deliver those outcomes
NHS Commissioning Board will be able to commission Quality Standards from NICE – used to help commissioners achieve better outcomes for patients
Will also be used to inform the development of payment mechanisms and incentive schemes
Quality Standards are not targets / mandatory or subject to regulation
A quality standard is a set of specific, concise statements and associated measures that:
act as markers of high-quality, cost-effective patient care across a pathway or clinical area;
are derived from the best available evidence; and
are produced collaboratively with the NHS and social care, along with their partners and service users
NICE quality standards
Guidance and related products
The purpose of Quality Standards are to bring clarity as to what high quality care looks like.
A quality standard is a set concise statements that:
- Act as markers of high-quality, cost-effective patient care across a pathway or clinical area.
- Derived from existing guidance, accredited sources of research and audit evidence as explained in the diagram. It is not intended to be a new product.
Produced collaboratively with the NHS and social care, along with their partners and service users For Patient Experience NICE will produce:
A generic standard for patient experience
A specific standard for adult mental health
All other Quality Standards should have a patient experience dimension built in to them
Research and audit evidence

15. Real-time Patient Feedback - Primary Care
The Best Practice Guide to using Real-time Patient Feedback is an appendix to and sits alongside Improving access, responding to Patients: A ‘how-to’ guide for GP Practices.
Using case studies, the Best Practice Guide demonstrates the positive impact on practices’ performance and patient engagement. It provides practical advice and a step-by-step guide for GP practices interested in carrying out real-time patient feedback. It summarises the approaches taken by pilot practices, providing:
Examples of issues they tackled
Learning from experience
Improvements achieved
Available at

16. NHS Bradford and Airedale NHS North Lincolnshire
Other approaches in primary care
NHS Leicester City
Improvements to services for adults with diabetes
Engaging patients & public to review diabetes pathway
Procurement of new community diabetes service better suited to patients' needs
Cost savings £100,000+ per year.
NHS Bradford and Airedale
Building Engagement & Experience into Contracts
Addressing patient experience at local level.
Contract monitoring - providers receive qualitative feedback.
Provider reports back on issues including:
Approaches to engagement undertaken
Patient-identified issues
Actions taken by the trust.
How action has improved patient experience
Evidence of feedback to patients
NHS North Lincolnshire
Patient Stories - Making A Difference
Care pathways, service specifications & new services commissioned as a result of patient stories.