What patients do and their impact on implementation: An ethnographic study of participatory quality improvement projects in English acute hospitals

Background
Implementation science is concerned with the use of evidence in health care practice in order to bring about improvements in the quality of healthcare. Growing international interest in implementation science is demonstrated by the establishment of the Global Implementation Initiative (GII) and an international journal ‘Implementation Science.’ Following a long debate about the role of patient experience in evidence based health care (Partridge and Scadding 2004), patient experience research has slowly gained acceptance as a valuable
source of knowledge for policy and practice particularly relating to quality improvement ‘work’ (Robert and Cornwell 2011; Robert et al 2015). With increased interest in processes of implementation and improvement (Eccles et al 2009), existing frameworks such as the Promoting Action on Research Implementation in Health Services (PARIHS) framework (Rycroft Malone et al 2013) have incorporated evidence from process data - including patient
experience research - alongside clinical evidence. Furthermore, the goal of improving patient outcomes drives implementation interventions, with patients sometimes described - narrowly - as the ‘target’ for implementation science (Nilsen et al 2013). Although the goals of implementation science align with those of patients, the potential for including patients in implementation processes - and evaluating their impact on quality improvements - has received limited attention. Whilst the importance of staff and patient engagement in improvement processes is acknowledged (Thomson et al 2015), patient
engagement typically continues to be dominated by one-off consultation exercises, formal patient complaints procedures and satisfaction surveys (Robert et al 2015). Consequently, participation has been characterised as being limited to the offer of a seat at the table (Coulter et al 2014, Stern and Green 2008). In the UK, impetus to reconsider patient engagement in all aspects of health care research and practice has come from recent high profile scandals in
patient care, perhaps most notably the publication of the Francis report (The Mid
Staffordshire NHS Foundation Trust Inquiry 2013). ‘Trust management had no culture of listening to patients. There were inadequate processes for dealing with complaints and serious untoward incidents (SUIs). Staff and patient surveys continually gave signs of dissatisfaction with the way the Trust was run, and yet no effective action was taken and the Board lacked an awareness of the reality of the care being provided to patients. The failure to respond to these warning signs indicating poor care could be due to inattention, but is more likely due to the lack of importance accorded to these sources of information’ (The Mid Staffordshire NHS Foundation Trust Inquiry 2013: 44) Given the moral and political pressure to involve patients, this paper examines the impact of
actively engaging patients in implementation processes as part of a participatory quality improvement project. A recent overview of the implementation science literature (Ogden and Fixsen 2014) highlighted the importance of stakeholders and suggested that ‘bottom up’ components to implementation strategies better ensure local needs and concerns are reflected, building ownership and commitment to implementation. However, the ‘bottom up’ approach to implementation and improvement described in the literature is primarily concerned with the roles and behaviour of front line staff rather than patients and carers (Nilsen et al 2013). Little attention has been paid within existing implementation frameworks to activities and participatory processes involving patients, carers and the public. This study aims to identify the different roles undertaken by patients and carers within a participatory quality improvement project and considers the nature of the impacts arising from such patient and
carer involvement.