An audible patient voice: How can we ensure that patients are treated as partners in their own safety?

The experience of not being heard

Dr Saleyha Ahsan is a doctor working in emergency medicine. She experienced the powerlessness of being a relative when her mother was admitted to hospital. Despite being a doctor (and an articulate renowned broadcast journalist), her concerns about the dramatic deterioration of her mother went unheard.¹

Alison Phillips suffered serious injuries as part of a road traffic accident. On several occasions during her hospital stay, she and those close to her identified serious problems (that resulted in prolonged intensive care stays) well before her clinical team had.²

Lowri Smith has a complex congenital heart condition and has been under close supervision by a tertiary centre for her entire life. In 2018, she identified an infected central line but had difficulties to gain support with getting it removed (Box 1).

What is common to all these experiences (and many others) is that patients and those close to them had prior experience and were applying their learning but had great difficulties to be heard as equitable partners in clinical safety during episodes of serious illness, and this despite being able to articulate this knowledge. Clinicians dismissed their evidence and expertise and were able to do so effortlessly.

Quality improvement beyond co-production

The reasons behind the observations earlier are complex and are sometimes described with the term ‘culture’. Culture manifests itself in beliefs and behaviour: beliefs about what is right, acceptable, tolerable and that are difficult to observe and quantify; and behaviours that can be observed and quantified.³ The usual response to ‘cultural’ challenges, complaints or adverse events are educational interventions.⁴ It would seem that after decades of a focus on better communication, ‘what matters to you’, co-production and shared decision making, something more transformational might be required?^5–7 That would be something that shifts the balance of available information, intervention and governance (and power) towards those that are affected by medical error and adverse events.

Quality improvement can be described in terms of outcomes, processes that are required to deliver those and the structures that enable them. If patient safety is going to improve, it will require deeper understanding about the processes and structures that enable the current level of care and the changes that would deliver more reliably safe care.

A narrowing gap between professionals and patients

In many industries, customers have gained access to tools to that were previously the prerogative of experts, from reading of gas meters to building furniture. This has enabled a shift in the relationship between customers and experts. In medical care, cautious signs of such a shift are visible: using vital sign monitors during the COVID-19 pandemic, checklists for safer surgery, and accessing clinical records to document their own symptoms and views.^8–10 A rising number of patients with chronic healthcare conditions in the UK are mastering the self-administration of complex and time sensitive medication at home while being wary that they are denied the ability to exercise this task in hospital.¹¹ In all these instances, the gap between patients and healthcare professionals is narrowing.

An audible and readable patient voice

Taking a history is another pivotal step in the clinical process, for medical emergencies presenting to hospital, an extended history taking is often warranted. Against the backdrop of rising numbers of emergency visits, in recent years there has been research efforts to use automated tools for history taking. The feasibility of such tools has been demonstrated and a team from University of Basel has shown the ability of a history taking app in gathering an extended patient history (including personal history, allergies, systematic history, risk factors etc).^12,13 Another team in Toronto was able to identify ambulatory patients significantly quicker than the routine nurse-initiated patient identification using a self-check-in kiosk.¹⁴ Automated tools have also been shown to reduce the waiting time before seeing a healthcare professional in the emergency department.¹⁵ A group in Sweden is currently investigating the use of a self-reported history taking for patients with acute chest pain collecting data to assess chest pain according to the HEART score.¹⁶

Self-reported history taking tools could aid a shift in the relationships between healthcare professionals and patients and an increase in the time for direct patient contact, thoughtful communication and subsequently improved patient care. Implementation at scale in large systems and over long periods of time might be required to explore the real effects for patients and the safety of their care.

In this edition of the Future Healthcare Journal, readers will find examples on how more reliable safe care might be practically achieved by and with patients during major surgery, critical deterioration or even routine care. The impact of the described interventions has often not been evaluated at scale yet, but the philosophy and practice are aligned with a vision or modern healthcare where patients and those close to them are equitable partners with their clinicians, with the ability to change the course of their care in real time.

Whether these tools allow true listening to patients and those close to them, and change some of the culture and hierarchical thinking that has dominated medical care and hindered breakthroughs for patients’ safety, remains to be seen.