Table 2 An example of stakeholder involvement in healthcare decisions: the National Institute for Health and Clinical Excellence (NICE)

Few organisations have sought to integrate stakeholders (especially patients and their caregivers) more thoroughly than the National Institute for Health and Clinical Excellence (NICE) in England and Wales [50]. NICE has created effective strategies to involve stakeholder groups including [50–52]:

• A programme within the Institute with dedicated staff responsible for patient and public involvement

• The identification and recruitment of stakeholders, including lay people, to NICE’s independent advisory committees

• The provision of training and support to lay people on NICE’s committees

• The registration of stakeholder groups, which are then routinely consulted electronically and through meetings

• The involvement of stakeholders throughout the development of guidance and decisions from topic selection to reviews of draft guidance, through to consultation and active participation on committees

• Systematic and transparent responses to stakeholders’ comments on drafts

• The development and dissemination of lay versions of NICE’s guidance, versions for key stakeholder groups, and mass media briefings, as well as versions for clinicians and managers, and

• The involvement of stakeholders in guidance implementation

NICE’s experience suggests that the involvement of stakeholders in healthcare decision making is possible and can work well, but requires strong commitment and specific arrangements. It can also be costly. Although NICE’s investment in stakeholder involvement is widely valued, it is uncertain whether the right stakeholders are involved, both in terms of which stakeholder groups engage in the process and in terms of the extent to which the individuals who become involved appropriately represent various stakeholders. It is also uncertain whether the strategies they use are as efficient as they could be – in other words, whether the resources invested in those processes represent good value for money [51]. There are also concerns about the growing burden of managing stakeholder input. Although the number of submissions from stakeholders has been increasing, involvement at the individual level within stakeholder organisations may be less than desired.