Written evidence from University of Oxford
Health Experiences Research Group and Georgina Craig Associates
(CFI 47)
SUMMARY
1. The University of Oxford Health Experiences
Research Group and Georgina Craig Associates would like to address
one issue raised in the Committee's Commissioning Report 2010—11
and identified in the terms of reference for the current inquiry,
namely patient and public involvement (PPI) in commissioning and
local accountability.
2. Patient experience has been identified alongside
effectiveness and safety as a key measure of quality.[97]
Improving patient experience is a key aim of the NHS. In both
policy and practice authentic patient experiences provide insights
that are a valuable resource for informing commissioning, care
management and quality improvement.
3. Using insights gained from people's experiences
of care has the potential to improve the quality of commissioning
decision making and deliver key elements of PPI by making commissioning
deeply responsive and person-centred - as well as ensuring commissioners
design and contract for a good care experience.
4. The NHS is new to the art and science of being
"customer" focused. This means there is room for innovative
thinking about how to deliver people-centred commissioning. Experience
Led Commissioning (ELC) is an innovative commissioning management
approach that uses an existing health experience research archive,
produced by the University of Oxford, in the same way commercial
businesses use consumer insights and market research to create
a replicable, cost effective, evidence based method of systematically
giving people voice within health commissioning and system design.
5. The archive of narratives and patient interviews
collected by the Health Experiences Research Group at the University
of Oxford and ELC offer a powerful marriage between robust experience
data and a new commissioning management approach that we believe
can improve commissioning under the new system.
6. We would be willing
to come and talk to the Health Select Committee about ELC and
how it can help GP commissioners to deliver "no decision
about us without us".
BACKGROUND
What is the Health Experiences Research Group?
7. The joint work of the University of Oxford's
Health Experience Research Group and the DIPEx Charity provides
high quality health information about patient experiences to the
public via our award-winning websites, Healthtalkonline.org and
Youthhealthtalkonline.org. These websites have over 1 million
unique visitors each year and currently 2.5 million hits a month.
Our successful model has generated huge interest internationally
and is being adopted by DIPEx partners in Japan, Germany, Spain,
Australia, South Korea, Israel and the Netherlands.
8. At the core of these resources is an archive
of over 2000 videotaped narrative interviews with patients and
carers in the UK discussing their experiences of various kinds
of illnesses and other health issues. The interviews in the archive
are collected by experienced qualitative researchers based in
Oxford. The research process means interviews are collected until
no new themes emerge and a complete picture of all relevant aspects
of the experience of that condition is established. In most conditions,
this results in around 40 people being interviewed. The archive
covers over 60 different health conditions with more added each
year, while the existing modules are updated and checked for ongoing
relevance. These personal experiences of health conditions are
presented alongside reliable information about illnesses and treatments
and links to other websites and support groups. The archive and
its website are an experiential information source for people
living with various conditions who want to hear what others have
experienced.
GEORGINA CRAIG
ASSOCIATES
9. Georgina Craig Associates (GCA) is a social
enterprise health consultancy that provides commissioning support
and specialises in experience led approaches. Since July 2009
GCA have been developing the innovative concept of "experience-led
commissioning" - a new approach to service redesign, development
and commissioning. GCA is working in partnership with the University
of Oxford's Health Experience Research Group to spread the use
of their existing archive of over 2,000 interviews of people telling
the story of their experiences of over 60 health conditions. In
addition to the existing websites, commissioning is one of a number
of potential secondary uses for this data.
IMPORTANCE OF
PATIENT EXPERIENCE
10. The websites www.healthtalkonline.org and
www.youthhealthtalkonline.org give people ready access to people's
experiences across a wide range of conditions. Studies of the
public's use of websites show that being able to hear experiences
of others with a similar condition makes people feel validated;
reduces the feelings of isolation that come from having the condition;
reduces fear and provides a wealth of practical information. Many
people say that there is a great benefit to having a 24 hour a
day, 365 days a year source of information that anyone can access
from the comfort of their own home without having to engage in
personal contact and deal with the related emotional demands.
11. Referring people to our informational websites
saves the NHS money by allowing them to gather high quality information
about their health condition, thus avoiding the need for additional
office visits and increasing the ability of the "activated
patient" to better manage their health condition. Patients
and carers need relevant and engaging information about the health
condition they are managing and its treatment that they can access
easily and understand. There is often not enough time during visits
with medical professionals to get sufficient information.
12. In addition the research being used on our
websites to support and inform individual patients and family
members, the archive has the potential to be used at a number
of levels to support professionals, managers, policy-makers and
specifically commissioners. However, it would be difficult and
costly to replicate qualitative research of this quality in every
health economy -even though its use would help commissioners to
measure experience. Our qualitative research can provide high
quality "national" evidence on what really matters to
patients and how services are responding to those needs, which
local health economies can use.
LEARNING FROM
LOCAL STUDY
13. We have recently tested the validity of using
national evidence by comparing our national interview data on
end of life care with interviews collected locally by one PCT.[98]
This demonstrated that the majority of themes identified locally
could have been anticipated from the national analysis. This underpins
the hypothesis that using national data could be a highly cost-effective
way to give local decision-makers access to rich, rigorous qualitative
data on patient experiences without having to repeat numerous
small-scale studies. We believe that the existing archive of experience
data can be harnessed systematically alongside quantitative evidence
collected at local level to improve the quality of commissioning
decision-making and create a more patient-centred approach.
PATIENT EXPERIENCE
AND COMMISSIONING
14. Healthtalkonline is already used within
clinical education. The material is also being used to support
service improvement and organisation. We are collaborating with
Dr Glenn Robert at King's College London, one of the originators
of Experience-Based Co-Design (EBCD), to explore how we can accelerate
the EBCD process by using our research as a source of interviews
to create trigger films of peoples' experiences to speed up the
EBCD service improvement process.
15. Taking this approach a step further, we are
also working with the social enterprise company (GCA), Pathfinder
Healthcare Development and the Health Works GP Commissioning Group
supported by the Department of Health to prototype ELC and apply
our research findings and trigger films within GP commissioning.
This approach allows people's voices and stories to be heard within
commissioning so that their experiences and needs can become central
in the planning and commissioning process.
16. Figure 1 summarises the ELC approach:
17. ELC uses the voices of real patients talking
about their experiences to change the attitudes and behaviour
of clinical commissioners and managers and to unite them behind
a common understanding of what it feels like to be a person living
with a specific condition. ELC helps commissioners ask different
questions about how services can best meet patients needs and
often reframes the commissioning question. Two examples are given
below:
18. This approach is already generating huge
interest and enthusiasm. We have over ten GP commissioning consortia
interested to helping us to develop and test the concept, including
a number of GP pathfinders.
How does Experience Led Commissioning work?
19. The ultimate purpose of ELC is to make commissioning
deeply and consistently people-centred by inspiring creative ways
of defining the commissioning challenge and by providing innovative
new ways of involving people in the redesign (co-design) and commissioning
of care, whilst at the same time being robust and evidence based.
20. Comparative research (Calabrese 2010) has
found significant overlap in the key themes identified by people
as of importance at a national and local level in our first area
of focus - end of life care. This is encouraging and suggests
that the University of Oxford archive has enormous potential as
an evidence base of health experience to support GP commissioning
groups. We have designed ELC from the start as a replicable process.
The combination of a national data set that has universal applicability
and a replicable model and framework for using it within GP commissioning
means ELC is likely to be a sustainable management model for the
new system that delivers:
— A person-centred
mandate to underpin strong leadership of the commissioning system
that creates "hearts and minds" buy in across the whole
health economy.
— A compelling
shared vision of patient-centred care to unite all stakeholders
and act as a focus for improved patient experience.
— Involvement
of people at a number of different levels in decision making,
including: focused, purposeful PPI that includes co design of
services with service users and a focus on community development/co-production
as part of commissioning.
— Quality
improvement and a programme to underpin QIPP.
— Engaged
commissioners, providers and staff and support for delivery of
patient-centric care (regardless of contracting model).
— An
evidence based approach.
— Deeply
responsive GP commissioning.
CONCLUSION
21. The Committee is rightly concerned about
how peoples' voices will be heard in the new commissioning structures.
There is room for new thinking about how to deliver large-scale
cultural change so that PPI in the NHS goes way beyond having
a "seat at the table" and commissioning becomes deeply
person-centred.
22. Commissioning is regarded as the right instrument
to drive quality and innovation. Quality includes patient experience.
Commissioners need to innovate so that they can walk in the shoes
of service users and see the world through their eyes. This in
turn will reframe the commissioning challenges they face and lead
to the design of innovative service solutions that deliver quality
and resonate closely with people's articulated needs.
23. We believe that spreading ELC and maximising
the reach and use of existing patient experience research within
the new system has the potential to deliver QIPP savings in PPI
and greater accountability by commissioners to their publics.
It will also improve the quality of commissioning. By integrating
patient experience research into local and national commissioning
decisions, we believe we can help the new system to achieve, "no
decision about me, without me".
February 2011
97 Department of Health. Transparency in Outcomes -
a framework for the NHS (2010). London: Department of Health. Back
98
Calabrese J (2010) A Comparison of Data on Patient Experience
of End of Life Care. Oxford: Green Templeton College. Back
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