Creating space in the agenda for shared decision making in England

There is no doubt that shared decision making has risen up the agenda. The idea of ‘no decision about me without me’ was central to the government’s White Paper ‘Equity and Excellence: Liberating the NHS’. This has been reinforced by the recent Operating Framework for the NHS in England which states, 'This Operating Framework puts patients at the centre of decision-making, with their experience of health and supporting care services central to the drive for further improvements.'

The rationale for change is strong: evidence shows that involving patients in their care leads to higher levels of satisfaction and improved health outcomes and in turn, to more efficient use of resources. However, embedding shared decision making involves significant changes to the patient-clinician relationship and the way care is organised – tasks that should not be under-estimated.

The choice agenda is central to government thinking about improving public services. The Health Foundation has been lobbying to ensure that the idea of choice in health is not dominated by choice of provider; the evidence shows clearly that choice of treatment and how they are treated matters more to patients than choice of provider. We are hopeful that our amendment to the Health and Social Care Bill will successfully enshrine this wider definition on the face of legislation.

Indeed, the wide–ranging description of choice in the Operating Framework is encouraging (para 3.22): 'Choice is critical to giving patients more power in our system. PCT clusters should drive forward improvements in patient choice, so that there is a presumption of choice for most services from 2013/14. During 2012/13 this means continuing the implementation of: choice of named consultant team; choice of diagnostic test provider; choices post-diagnosis including choice of treatment; choice of treatment and provider in mental health services; choice in care for long term conditions as part of personalised planning; and choice about maternity care.'

In the Operating Framework, there is also a focus on improving information, with patients getting better access to their records, as well as information on outcomes to support choice of provider. The Health Foundation believes that patients need to be supported in how they use this information; simply making it available won’t bring about change. Next year we will be sharing the learning from our leading-edge work on access to health records which is part of our Closing the Gap through Changing Relationships programme.

There is also an emphasis on listening closely to patient feedback and complaints. These are important sources of intelligence that will be used to improve services, a move which we welcome.

We are pleased that the national performance measures include the proportion of people feeling supported to manage their condition, though more consideration is needed about how this is best achieved. For the NHS to see improvement in this important indicator, we will need to become much better at providing self-management support.

There is no denying that the agenda facing the health service is huge; there is a risk that the focus on shared decision making might slip in the face of other pressing issues. Looking to the next year, David Nicholson describes 'a truly formidable leadership agenda with the challenges of maintaining a grip on performance, meeting the quality and productivity challenge, building the new delivery system and getting the basics right every time'. Indeed, he states, 'This is not a time for the faint-hearted.'

Given the scale of the challenges, the complex and difficult challenge of improving shared decision making for every patient might slip down the agenda. The focus for improving choice might revert to simply being about choice of provider, and listening to patients might become limited to feeding in to service design.

Counter-acting this will be the launch of a Department of Health funded national programme to support shared decision making. The Health Foundation will also be launching resource centres on shared decision-making and on patients’ access to their records, providing practical tools, materials and advice for commissioners, clinicians and managers to support implementation.

Shared decision-making is on the agenda, but the challenge for people in the health service will be to find the space to continue to make progress. It will be a top priority for the Health Foundation to step up our support to people wanting to enhance shared decision making within their services in 2012.