Patient and Public Involvement: Transforming Care through Shared Decision Making

“Shared decision making will become the norm: no decision about me without me”

The inclusion of the above line on the first page of the recent NHS White Paper was the context in which a conference titled ‘Transforming Care through Shared Decision Making’ was held last Thursday. Drawing upon a variety of clinicians, patient groups, managers and academics interested in the field of shared decision making (SDM), there was discussion of the current levels of SDM within the NHS and its potential future influence. I attended on behalf of TCC to see how far the inequalities in the provision of patient information that TCC Chairman, Jonathan Upton has recently blogged on, were being addressed.

As Dr. Angela Coulter from The Foundation for Informed Medical Decision Making noted, whilst there has been widespread support for SDM for a while now, patients’ reports have not suggested that this has necessarily been put into practice.

A general stubbornness on the part of some clinicians to acknowledge the opinions of patients was highlighted, something that was attributed to the traditional nature of medical training and the inherent paternalistic attitude of senior doctors. Whilst clinicians often see the theoretical benefits of SDM, when this inevitably leads to patients telling doctors what they themselves want, communication breaks down as doctors feel that they know best.

However, there was a feeling that the White Paper was cause for a degree of cautious optimism about the potential for a more focused implementation of SDM. Dr Coulter argued that choice was not about patients being able to choose which hospital to attend. Dr Steven Laitner further argued that SDM should in fact be much more about involving patients in making decisions about which treatments are best for them.

Professor Clare Bradley stressed the importance of distinguishing between measures such as health status, satisfaction and well-being and a more general quality of life. She argued that these have often been confused, particularly by NICE, when treatments can often improve health but actually damage quality of life.

The conclusion was that it is often patients who are much better placed than clinicians to decide on the care outcomes best for them. By providing patients with the medical information and other ‘decision aids’ available to doctors, both the quality and productivity of service could be improved.

To this end we were shown a variety of innovative and engaging websites and interactive online decision aids. But as Dr Amir Hannan rightly pointed out, there is a danger in an assumption that information equals empowerment and argued that some people need more than just a website.

Indeed, Mark Duman of the Patient Information Forum (PIF), noted that almost 40% of adults in the UK do not use the internet every day. A large number of these are potentially excluded from such processes of SDM. Without a more encompassing approach, there is a danger that an ‘inverse care law’ might be reinforced; those that are most in need of healthcare – typically those in deprived areas – find it hardest to access – as deprived areas have a lesser likelihood of access to the internet.

As part of the more encompassing approach, one also needs to address the issue that some people, given access, still do not respond to information. As TCC Chairman Jonathan Upton recently blogged, needs, values, emotions and motivations are key drivers here and insight is required to understand which values segments of the community are least likely to respond as a result of this.

SDM clearly has a role in the future of the NHS. Andrew Lansley sees it as being right at the heart of his reform package and the attendees of this conference suggested a willingness right across the board to implement it. What must be ensured along the way is that SDM maintains the universal principles of the NHS in ensuring that it is open to all patients, and not just the proactive minority.

Danny Slater is a Research Assistant at The Campaign Company.


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