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OPM Public Interest Seminars

Patient and public participation in the era of the Big Society


OPM’s latest public interest seminar, held on 11 October 2010 in partnership with Involve, a
not for profit organisation specialising in public participation, focused on patient and public
participation in health, with a particular focus on the impact of current policy initiatives
including the Big Society and the proposed health reforms in the recent NHS White Paper.
Over recent months there has been a proliferation of discussions, opinions and ideas from
policy-makers, journalists and political commentators on the Big Society, in spite of which, its
precise meaning - what it might actually look like – remains, arguably, unclear.
This is true not least in the field of health where patient involvement has been firmly on the
agenda since long before the phrase was coined. What impact will the Big Society initiative
and the NHS White Paper have on the role of patient participation in NHS care and public
health delivery, and on how people care for themselves and each other?
The seminar presented a range of views on these and many other questions, including from
the following panellists:
• Brian Fisher MBE, Patient and Public Involvement Network Lead for the NHS Alliance,
member of the PEC at Lewisham PCT, and a GP for 25 years. He has pioneered
approaches to user involvement in the NHS which include community development and
patient access to health records.
• Dr Ruth Wallis, Director of Public Health at Lambeth PCT. Ruth became a Director at
Lambeth in 2002 after working in public health in South London for many years. Her
interests include health inequalities, particularly around income, housing and the
environment.
• Dr Kieran Mullan, Director of Strategy and Engagement at the Patients’ Association.
Kieran’s work focuses on healthcare associated infections and patient safety; he is
working at The Patient’s Association part time whilst training as a junior doctor. He has
interests in health policy, patient advocacy and quality improvement for patients.
• Edward Andersson, Deputy Director at Involve. Edward is an established expert on
methods of participatory decision making and has advised many organisations on public
engagement strategies, including the Home Office, the European Commission and
various Local Authorities and Health Trusts.
Please note that the seminar was conducted under Chatham House rules and
therefore the points noted below are not necessarily the views of OPM, Involve or any
one of our speakers or participants specifically.

Community development and health: a potential working model of Big


Society
Despite uncertainty around what the Big Society really means on the ground, many argue
that it should be seen as an opportunity instead of a threat - particularly in the context of
health. Research shows that people’s social networks - how they relate to each other - can
have a significant impact on health: strong social networks have been shown to increase
resilience, protecting physical and mental health and promoting confidence and a sense of

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control over one’s own health and wellbeing. The Big Society concept is all about community
involvement and the development of these social networks. As such, community
development work, which aims to help people to work together and establish local networks,
may offer a model on which the Big Society could work.
An example of the potential impact of community development on health can be seen in the
Help Project, a community development intervention funded by the Department of Health
which involves working across three estates to put in place a 7-step model bringing together
local agencies and residents. It aims to create a partnership between agencies and residents
which is based on listening and working towards shared goals. The outputs of the project
have been closely monitored through comparison with control sites, and social return on
investment (SROI) outcomes have been retrospectively calculated. The evidence shows that
a number of improved health outcomes have been attained through the work, including
increased life expectancy (+6 years).
The model has encouraged local leaders to come forward and get involved,
increasing confidence within the population to play their parts in engaging with local
agencies to identify and address local needs - leading to rapid, positive change.
Residents have now formed a company which is closely involved with a GP surgery,
playparks and dental surgery within their community.
This approach coincides with the two identifiable strands within the Big Society
rhetoric: volunteering (communities and individuals working for themselves) and
responsive agencies (encouraging local agencies to develop links with their
communities). Key to making this a success is training, because community
development is skilled work, but the dramatic changes in health achieved through
Help Project suggest it to be a worthwhile investment.

The challenges of the NHS White Paper for public health


Public health has the central aims of improving health outcomes and reducing inequalities.
Part of this role entails involving patients in shaping care pathways and ensuring that
collective money is spent on the right things. However, this means looking beyond patients to
the wider population, to the people that do not access health services – for example, through
estate-based work.
The proposed health reforms talk about increasing public and patient involvement, but this
needs to ensure two things: a) that what happens will benefit the whole community, and b)
that it is sustainable. Some of the key challenges to this are:
• The move towards more local decision-making. This may mean that difficult decisions will
be transferred from the Government to local decision-makers, placing significant pressure
on them in light of impending resource shortages.
• Lack of clarity about the relationship between Local Authorities and GP commissioning
consortia. When health becomes politicised, decision-making becomes driven by urgency
- dealing with the most immediate and high-profile issues like A&E closures, to the
detriment of important longer-term issues.
• National commissioning for some services, such as maternity services. This may lead to
local needs being overlooked, and lose the valuable knowledge and experience that
areas have of their own local needs.
These challenges are compounded by an overall lack of clarity about what Big Society
means and how (and whether) it is different to the voluntary sector or co-production. If

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patient and public participation is to play a meaningful role in the health scene in coming
years, it needs to be informed participation, not just a ‘headline’.

Making participation valuable


The Big Society concept assumes involvement to be an intrinsic good. But what are the real
motivations underpinning patient and public involvement in the health sector?
There are several possible answers. Firstly, the NHS is publically funded, so patient
and public participation is necessary for having a sense of control over public money.
Yet there are many examples of other taxpayer-funded services that do not involve
the public, for example the armed forces. Secondly, it’s good politics: involvement
sounds and looks good in the media. But past experience indicates that it is common
to overestimate how much the public really wants a say, when it comes to actually
responding to public consultations, for example. Thirdly there is the view that patients
and the public have unique insights to offer on how to improve services. Indeed they
do, but this is not always a key motivator either, principally because much of what
patients want is already known or seen as ‘common sense’ – of course, patients want
improvements in the quality of services, provision of information and increased
choice.
What else? Public involvement protects decision-makers, by making the public share
the responsibility for controversial decisions; this is certainly a key driver. But perhaps
the most worthwhile reason for patient or public involvement is that they are in a
fundamentally different position to health professionals. For those involved in
delivering health services, the challenge is not knowledge of what patients want, but
putting that into practice; there are limits placed on their capacity to do this because
of their roles, commitments and responsibilities as professionals. In contrast, patients
and the public are free from these limitations. Their interest is the pure one which
should be at the heart of the NHS - improving health outcomes.
Evidence of patients’ opinions already exists - it is collected on a regular basis, for
example through the National In-Patients Survey and the National Out-Patients
Survey. It could be argued that decision-makers know what patients want, they just
are not acting on it. Patients complain, complaints are noted, but the service doesn’t
change. There are already plenty of mechanisms in place to find out what patients
think and want; the real gap is in using that information.
So why aren’t patient voices being acted on? Perhaps because of the likelihood that
the majority of public views do not add to what health professionals already know; if
you ask people on the street about an issue, 80% will not say anything new. And
what of the remaining 20%? If that 20% were not merely listened to, but had their
views acted on, they would be able to play a real role in making important decisions
about health services.
Looking forward in the changing health policy environment, it seems that the value of
patient and public participation will depend very much on what would be a fairly
radical culture shift within the NHS, away from simply listening to patients, towards
enabling more informed participation and acting on the views of informed patients.
Whether professionals are willing to yield up a little of their power and actually
implement change based on the insights of others – and whether they will commit the
resources necessary to develop the right structures to make this happen - will be

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major determinants of what difference the Big Society makes to health delivery and
outcomes.

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