Implementing a patient-initiated review system in rheumatoid arthritis: a qualitative evaluation

Putting into place new procedures within a busy, already stretched system is often challenging. In this project issues arose due to its origins from within the workforce rather than management, and due to it being perceived as different, through being a ‘research’ project. It is possible that as a result of these factors, implementing DA did not have normal management and administrative back up to iron out the inevitable snags. In order to successfully manage change there are general issues about team work, communication and ownership of change processes that need to be considered from the outset. The apparent lack of engaging the whole team early on in the process appears to conflict with the suggestion that implementation processes are framed through active participation and the collective purposive action aimed at some goal [12]. It can be difficult for clinicians to effectively bring about organisational change and management engagement and support is essential [13], particularly around the expertise needed to facilitate change.

Although Whear et al. [14] suggested that the benefits of information provision face-to-face are unclear, our study found that these were important factors. In particular, trust in the patient-nurse relationship built on familiarity with the nurse and this facilitated acceptance of the new system. Analysis suggested that the biographical and social context through which individuals experience living with a long-term, chronic medical condition and their ongoing relationships with healthcare professionals are crucial to understanding the impact of self-management education [14].

For both patients and HCPs the biggest impact of the implementation of DA clinics has been the wholesale shift in review initiation. The DA clinic therefore appears to support recent NHS guidelines that foster greater patient involvement in managing long-term illness [15] as well as NICE guidance for managing rheumatoid arthritis in adults [16] by providing rapid access to treatment and management of disease through active help seeking. Whilst it is important to note that all patients who transferred over to the new system completed an education session which informed them how DA reviews would work, none were offered a structured programme for self-management of disease as suggested in a previous trial [3] or given a guidebook to aid self-management [14].

All respondents commented favourably on the shift towards self-management and greater empowerment in the control of their disease. However, individual circumstances and needs of patients should be considered when contemplating a move to patient-driven review. It is unlikely that 100% of patients are suitable for patient-initiated care. For a DA review system to be implemented successfully, patients need to be offered management based on ability and choice rather than medical condition – those who can self-manage and are suitable for DA and others who need to stay with the traditional clinician-led outpatient care. For example, some patients do not have the confidence to ring the helpline, to recognise deterioration in their health or may feel they do not want to be a burden [17]. It may be inappropriate to offer a DA review to those with reduced cognitive capacity and those offered the opportunity but unwilling to participate can continue with traditional outpatient care [18]. Yet, paradoxically this shift in control appears to sit counter to the historical paternalistic ethos of healthcare where healthcare professionals were in control and deemed to be the ‘expert’. Now patients had been given greater autonomy over their disease management, despite the difficulties this could pose to patients who perhaps preferred control to remain with healthcare profession, or who lacked the necessary factor such as intellect, memory or communication skills to describe symptoms over the telephone [19]. However, a potential drawback of the change to a DA system is that most appointments are reactive and deal with a ‘crisis’ and the more slow and progressive aspects of a disease which require a proactive approach may be missed by both patients and clinicians.

DA can also be seen as fiscal strategy that seeks to reduce costs whilst empowering patients and attempting to improve satisfaction. However, because those seen have more active problems a DA follow-up service may mean that clinicians see fewer patients but for longer appointment times. The ‘Payment by Results’ (PbR) system used by the NHS appears to have an unintended consequence of increasing the frequency of clinical appointments [14]. It is therefore not clear how the DA system would fit into current commissioning strategies such as PbR.whether they increased or simply changed.

The study raises a question about generalisability of the findings in that it was confined to one NHS teaching hospital in the South West England - a region with the highest proportion of older people in the UK and where non-white ethnic groups make up around 5% of the region’s population [20]. All those who were transferred to DA had access to a telephone and were able to communicate effectively with a telephone answering machine in the first instance. These factors may impact on service redesign in different areas of the UK. For example in areas with greater cultural diversity multi-lingual education sessions may be required. A further limitation of this study was the lack of resources to undertake a second interview with all staff to establish how their experiences may have changed over time [21]. Serial interviews of patient participants may also have been valuable to help inform how patients’ needs may change over the course of a year of engaging with a new service model. A further limitation was not using the observation of the education session as a formal method of data collection to be analysed in conjunction with the interviews. This triangulation of data may have added a differing perspective to the findings.