By Stuart Hall and Lee BryantThe new UK Department of Health white paper Our Health, Our Care, Our Say: A New Direction for Community Services is a major policy initiative that sets a new direction for the health and social care system. It calls for a shift in the way services are delivered towards more personalised and community-based approaches; it also seeks to tackle health inequalities through funding changes and to give people a stronger voice so that they become the major drivers of service improvement
Prime Minister Tony Blair calls it “a new era where the service is designed around the patient rather than the needs of the patient being forced to fit around the service already provided.

“We want change to be driven, not centrally, but in each community by the people who use services and by the professionals who provide them.”

The idea is that more engagement will mean more innovative approaches to service development, with the Government keeping an eye on “public satisfaction and service quality,” as Health Secretary Patricia Hewitt puts it
* Download a brief guide to the white paper (PDF 530KB)* Download the white paper (PDF 3158KB)Compared to the 2004 white paper Choosing Health, this time there is slightly more focus on the agents of choice (patients) and the locus of services (community) than the basic mechanisms of choosing services, although the two papers share many common themes
The response so far has been quite positive. The British Medical Association welcomed the paper, but pointed out that investment in primary care must be a priority if GPs are to help achieve the intended results. The Guardian responded positively, but pointed out that the increasing focus on preventive and community-based primary care at the expense of costly and often unpopular in-patient services (especially in areas such as mental health and long-term medical conditions) comes right in the middle of the biggest hospital building programme in NHS history
But the idea of treating people as ‘consumers’ of healthcare is not necessarily the favoured approach of many users and providers of services, according to E-Gov Monitor, which reports the results of a research project conducted on behalf of the ESRC
Professor Clarke said: “We found that people have many relationships with public services. They are citizens, experts, taxpayers and voters as well as users, and they see themselves as part of wider bodies – as members of the public or local communities.

“Our findings show that both providers and users consistently view public services as different from commercial transactions, insisting that the process is ‘not like shopping’. This phrase was used repeatedly in the interviews. It captures the view of the people we met that public services are, and should be, centred on ongoing, personal relationships, rather than being anonymous, one-off transactions.”

Whilst the move towards treating patients as customers, with the rights and respect that is supposed to entail, probably does represent progress given the state of many NHS frontline services today, the ESRC research supports the idea that we need to go further and acknowledge patients as partners in healthcare. This chimes with new thinking in society more generally about the move from passive consumption to participative co-production in service delivery
Commenting on the white paper, Emma Harrison, senior public affairs officer of Which? had this to say

“Recent Which? research highlighted the fact that nearly two-thirds of the public and health professionals think that the main priority in health care is involving patients in decisions about their condition or treatment. Which? therefore welcomes the White Paper as it signals a much-needed commitment to building healthcare services around the patient.

“However, if the Government is going to make this concept work, it is essential that patients are involved in discussions to make sure that communities get the services they really need.”

The Department of Health clearly made a real effort to stimulate discussion around these issues preceding the drafting of the white paper, as they outline in an article about their citizens’ advisory panel. But this was still discussion in the traditional sense – one step removed from focus groups and town hall meetings – and largely one-to-many
There are several aspects of the white paper’s vision that suggest a need for truly involving people in healthcare provision, preventive medicine and community-based services, not just by supporting individual contact with health services, but also by supporting many-to-many interaction centred round local services and peer-to-peer support. It is not just about letting people interact with the NHS, but also with each other
Technology has huge potential to act as an enabler for patient choice and community-based services. E-Health Insider points to the obvious technology reference in the white paper, an online self-assessment “Life Check” that can be sent electronically to GPs and accessed via Healthspace. There are also plans for a large-scale demonstration project on how technology can reduce hospital admissions, and a joint health and social care electronic record in the white paper
But just as the move away from in-patient care paradoxically coincides with our biggest ever hospital building programme, so the move towards technology-assisted community support comes in the middle of the biggest ever civilian IT project, the hugely ambitious Connecting for Health project, which is very much driven by a top-down approach. Estimated to cost in the region of UKP6bn, it is by virtue of its size, cost and scope a fairly centralised process, and arguably a long way from the needs of community-based primary care. If it succeeds, CfH will deliver the kind of underlying infrastructure and pipework that would not otherwise exist, such as electronic patient records, a national data ‘spine’, shared data standards and a range of clinician tools. But if we are to involve patients and other stakeholders then there is a real need for simple, usable technologies for community-based interaction around healthcare, whether in support of choice, better information, prevention, planning, commissioning or self-care
Patient Opinion is one small example of this new thinking – a website where patients can share their experiences and rate hospitals and services – and is very much in line with the white paper’s call for everyone to have the opportunity to share their views and experiences. It uses social
software tools and techniques such as patient weblogs, location-based services, RSS and social tagging to create reliable patient-generated reputation information for individual departments and services, and the site shares these with prospective patients at the point when they are choosing a hospital. It is also the first major application to achieve real-time web service integration with NHS.UK, pulling in up-to-date information about every speciality at every hospital in England, every day. But Patient Opinion is just the beginning. When you understand the shared, user-generated value that such a service starts to generate, it is easy to think of many other ways in which people and patients can help each other get the best use out of limited NHS resources, whilst taking more control of their care
Many users of the NHS often complain about the way that systematised health service delivery sometimes tends to de-humanise the care process, with people being shunted from referral to referral rather than enjoying the kind of continuity of care that an old-style family doctor used to provide. Some of this is inevitable given the scale of the challenges facing the NHS and the demands on its resources, but perhaps social tools and online interaction can soften the edges a bit, allowing people to support each other in their healthcare journeys. Especially in the context of growing mobility and dislocation in urban areas, the benefits of re-creating networks of conversation and action around the subjects that really matter to people are abundantly clear
How can this happen? The white paper calls for organisations providing health and social care services to seek the views and wishes of patients and service users, to act on these views, and to involve local people in decision making. Local Government argues“(this) is best served through strong local partnerships that are based on the type of care people want. We hope the Government has embraced this vision and wants to devolve power to our neighbourhoods”. Voluntary organisations and the private sector both want to be included as partners in the commissioning process to create more options for patients. Some combination of all of these may help, but the missing link is the participation of the patients and local communities themselves
In contrast to the top-down approach of major infrastructure projects within CfH, with limited upfront consultation followed by deals with large corporate technology vendors based on specifications for hugely complicated systems to be delivered over several years (and all the problems this classic outsourcing approach can bring), we need to support more iterative, bottom-up processes to develop patient-centred and community-based networks. Instead of one enormous project, perhaps this calls for many small projects that are potentially interoperable so that we can learn what works and what does not. Certainly it would be nice to think this would be supported by the new social enterprise unit at the Department of Health, not just to promote alternative health assessment providers, but also peer-to-peer approaches such as Patient Opinion
That is not to underplay the importance of a national network of underpinning services that is required to push the NHS into the digital age, and this is precisely where CfH can leverage its muscle; but there are huge savings and benefits to be had from building some people-facing, friendly layers of social interaction on top of all but the most confidential and secure services to help people get the most out of them
In business, blogging and social software have seen free software succeed where million-dollar systems have often failed. These simple tools help engage people in collaboration, knowledge sharing and debate, and stimulate peer-to-peer assistance and support. They are all about people helping themselves supported by online social networks to create what has been called an architecture of participation. Perhaps there is a role for this philosophy in improving healthcare through social technology and in implementing the vision of Our Health, Our Care, Our Say?