Sutton et al report in this edition of BMJ Quality and Safety the findings from a qualitative process evaluation of a pilot patient-activated escalation system in four surgical wards in three English hospitals.1 The study is part of a £2.5 million National Institute for Health and Care Research grant2 testing an escalation system with the name ‘Early 3S’ (See it Early, Speak up Early and Save lives Early). In the participating wards, the system was publicised to patients through leaflets and posters. In two sites, the responder to telephone calls for help from patients and family was a nurse on the actual ward team; in one of these sites the programme was discontinued after 2 months and in the second site most calls were not picked up by the responder. In the third site, a critical care outreach team received seven calls in 8 months but identified no events of significant deterioration. As well as ethnographic observations, interviews were undertaken with 18 staff and 9 patients—although not with friends or family members. The subsequent thematic analysis raised concerns around leadership support, professional roles, capacity of the team and equity in the use of the patient-activated rapid response system.

What is patient-activated rapid response?

As health services are faced with mounting demands, the potential for hospitalised patients to experience clinical deterioration is continuing to increase. To cite just one example from the UK: in 2022 there were 251 595 deaths in English NHS hospitals, of which 75 548 were considered avoidable.3 This equates to five avoidable deaths at each trust each month.

Patient-led or to stay with the more commonly used term patient-activated rapid response systems allow patients admitted to hospital, their friends and family members to call for help when the patient’s condition is deteriorating or there is a serious safety concern. Services have commonly been set up after breakdowns in recognition of deterioration and failure to escalate care, such as children who have died as a consequence of failure to rescue from potentially reversible conditions including sepsis and postoperative complications.

Patient-activated rapid response systems are in operation in a number of health systems across the globe,4 including the USA,5 most parts of Australia6 and New Zealand.7 Mechanisms of escalation vary, but while many rapid response systems for healthcare professionals use defined physiological triggers for escalation, a ‘worry and concern’ is the usual activation mechanism for patient-activated rapid response. Data from evaluations suggests that the number of escalations is often low, that a key concern of patients and family members is poor communication with staff and that most escalation is through (female) relatives.8 The literature also suggests that staff acceptance increases post implementation.9 Surveys of healthcare professionals undertaken by our team (personal communication) suggest that the overwhelming majority would prefer to have their own care delivered in a hospital that provides patient-activated escalation.

Where things might have gone wrong

Coming back to Sutton et al’s manuscript1 in this edition of the journal: the authors are sceptical about the introduction of patient-activated rapid response in their units, but problems with the design of their study might have contributed to their results and conclusions:

Patient-activated rapid response is universally seen as an escalation mechanism for patients and families who are concerned that they are not heard by their primary ward team. The fact that in two of the three pilot sites, this ward team was the very recipient of the calls instead of a dedicated rapid response team is highly unusual and likely undermined the validity of the intervention.

One centre withdrew from the study before a single call was received due to concerns of senior staff about workload. Staff-associated factors can critically affect the introduction, sustainability and success of patient-focused interventions.10 This poses the question of support by organisational leadership for the implementation: were they aware that patient-activated rapid response can provide a safety net not just for patients but also for junior staff if they feel intimidated when trying to advocate for a patient? Lack of resources are a reason why patient-activated systems are needed: in a stretched system with greater workload, staff are less able to keep track of patient illness or monitor their patients for signs of deterioration.11 Rather than allowing patient deterioration to go unnoticed in understaffed areas, using all members of the team involved in patient care, including the patient and their family/friends, would hence seem an important route to improve recognition and escalation of deterioration.

Sutton et al seem to conflate patients who raise concerns, but are not listened to, with patients who receive timely care: patient-activated escalation systems are for patients and family members who are concerned they are not being listened to by staff. However, the sampling strategy for this study did not focus on these groups: nine patients from one of the sites were interviewed, of these seven had experienced deterioration events and presumably timely escalation, but most had not heard of the ‘Early 3S’ service and none had used it. It is difficult to see how the authors would extrapolate from these patients to those that had used ‘Early 3S’ or those who might fall through the safety net of care and were neither escalated nor used ‘Early 3S’. Readers of the Sutton paper should therefore not conclude that the low number of activations in the study wards would mean that the service is not needed. The value (and functioning) of the intervention to patients with missed escalation cannot be assumed from the views of patients who had timely escalation.

There seems to be a further mix-up of the issue of patient reluctance to raise concerns with the issue of staff reluctance to act on concerns when they are raised: Sutton et al explore patient reluctance to raising concerns. Although important, it is a separate issue to staff not acting when they are raised. This analytical focus means that the findings, while interesting, are of limited relevance to the real-world problem faced by patients such as Evan Smith12 who resorted to calling an ambulance from his hospital bed before his preventable death from sepsis, or parents such as David Williams13 who repeatedly raised concerns with ward staff about his son’s raised blood sugar levels before using a ‘Call For Concern’. In this instance, a member of the rapid response team took less than a minute to identify and rectify an insulin pump problem, thus preventing catastrophic deterioration. In another example, Alison Phillips was left fighting for her life in intensive care after concerns of nurses and family were dismissed on a surgical ward, leading to a failure to escalate catastrophic deterioration.14 Having returned to the same ward her loved ones sought out intensive care doctors when she once again became septic, this time from her central line. In all of these cases, objective concerns by patients and their families were belittled.

Relationships between patients and staff: what escalation feels like for patients

Patients in hospital are reliant on strangers and trusting in the expert care they hope to receive: when a smiling face or a gentle bed bath can determine a good day or bad one, patients’ fears and vulnerability are real. Patients see how hard staff are working, how stretched they are and do not want to ‘rock the boat’ or be perceived as a nuisance.

In reality, the fear about disrupting patient-staff relationship is a moot point—often, the point at which patient-activated escalation is initiated, is when the patient-ward/staff relationship has seriously broken down. Lack of communication or timely response to concerns may have arisen for a variety of reasons and should not automatically be considered a failing of the ward staff. Yes, it could be an issue of staff competence or attitude, but staff themselves may be struggling to have their concerns about a patient acted on, with culture, capacity and sheer exhaustion being more likely factors. When the perceived risk:benefit of calling tips, patients or family will call, because to them, at that point, it is a matter of life or death.

What next for patient-activated escalation?

While recognising how patients feel vulnerable in escalating concerns, Sutton et al seem to take no action or consideration as to how to address this in the design of their intervention or how it could inform future work in this area: there is currently no standardised design for patient-activated escalation. However, good design, that is locally meaningful, is often based on learning from failure.15 For example, Wellington Hospital’s ‘speak to me’ patient escalation system16 had several iterations of leaflets and posters, before landing on the popular ‘business card’ design. Ethnographic research can play an important role in design thinking,16 but requires iterative development. Should a call-for-help really rely on user education? Or should design excellence be defined by the simplicity, intuitiveness and ease of use of the product or service?

With the rising capability of patients to monitor their own vital signs, access medical knowledge online and connect to experts globally, it is only a matter of technology and imagination until more sophisticated integrations of patient networks and clinical teams will become the norm. When rapid response teams were first set up, their usage by staff was often low. This changed when research around physiological triggers identified quantifiable patterns of increased risk that could be translated into dichotomised triggers, protocols and educational interventions. It is likely that similar defined triggers would be helpful for patients and family members to facilitate actions and a joint understanding of safety.17 Patient-held checklists in oncology18 and surgery19 are first steps in this direction.

Shared decision-making is already the dominant philosophy of care in many settings, and this could be applied to decisions around escalation. This means that the question of innovation in patient-activated escalation is not ‘if’ or ‘when’ but ‘how’.20 A change in narrative is needed: the patient is part of the team, and their ability to bring additional skills to the bedside is not a threat but an opportunity. An equitable partnership is essential for safer care in hospital while aligning capability, opportunity and motivation of patients, families and clinicians.

Patient-activated escalation: families and friends are ready

Sutton et al’s paper discusses a non-functional design of a patient-activated rapid response system with limited iterations that did not result in meaningful use or clinical impact. This makes it challenging to draw wider conclusions about barriers or enablers for patient activated rapid response systems. The use of patient-activated rapid response across the globe would however suggest that it is not a day too early for many patients, families and organisations.

We would like to ask Sutton et al and the readers of the journal to consider what they would wish for if they, or their loved ones, ever faced the reality of deteriorating in hospital? If they ever become a faceless patient, admitted to a stretched ward in an unfamiliar hospital, perhaps at a weekend or overnight, maybe to a ward with cultural challenges and if their concerns are being ignored? Would they not hope to have a system available that allows them or their family to use their knowledge and escalate care? And finally: would they not prefer to be cared for in an organisation that values patients and families as trustworthy partners and expresses this in the operational structures and processes it provides to them?

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