Involving patients in patient safety policy development and practice and in their care and treatment seems quite simple and straightforward on the face of it. However, in practice it has proved exceedingly difficult, judging from past attempts in the NHS, and patient safety crisis investigation reports. There are regular clarion calls made to involve patients more and they have continued for many years with mixed results. The Patient Safety Commissioner (PSC) recently stated:
‘I have discovered that we need a seismic shift in the way that patients' and families' voices are heard. This requires changes in legislation, regulation, policy, commissioning, education, professionalism, attitudes, behaviours, and culture.’
We can see failings from past patient safety investigation reports of patients not being involved enough or at all in patient safety investigations, not being talked to properly, and lack of empathy or compassion shown towards them. Also not being involved enough in decisions about their own care, treatment, poor consent procedures and so on.
Reading past patient safety investigations, such as the one into East Kent, the challenges that the NHS must meet in some patient empowerment areas are starkly illustrated:
‘Where things went wrong, clinical staff, managers and senior managers often failed to communicate openly with families about what had happened. Safety investigations were often conducted narrowly and defensively, if at all, and not in a way designed to achieve learning. The instinct was to minimise what had happened and to provide false reassurance, rather than to acknowledge errors openly and to learn from them.’
We do need to ask ourselves why it is so difficult to properly engage patients in patient safety investigations, policy development, practice, treatment and care. There are some good practices chronicled in past investigations and other reports, but this is often eclipsed by the poor practices identified.
Several recent reports will be discussed here. They helpfully illustrate ways of improving patient safety culture through more patient involvement across several areas. They also identify the opportunities and challenges in this area.
Global perspectives
The World Health Organization (WHO) provides a global perspective on engaging patients for patient safety in an advocacy brief and raises some fundamental issues. It uses the foundation premise of viewing patient safety as a fundamental human right. Patient engagement can be seen as a fundamental prerequisite to the development of a good sustainable patient safety culture:
‘Patient engagement reduces harm and can lead to improved health outcomes, greater efficiency in health systems, reduced health care costs, and enhanced trust in health systems.’
Concerningly, WHO (2023) does note that some high-income countries where patient engagement is advanced have not seen ‘patient engagement as a means of improving patient safety’ (WHO, 2023: 7). Much more needs to be done in this regard. Sections in the report include the burden of harm, patient engagement as a cornerstone for improving patient safety, the global status of patient engagement for patient safety, and the global response.
There is also a discussion of the role of different actors in patient and family engagement, which clearly shows how patient engagement can be improved across different healthcare spectrums. The actors are patients, families and caregivers, governments, health facilities and services, patient groups and other stakeholders, health and care workers. The roles that these groups can play in patient and family engagement are stated, providing a clear blueprint for future action.
Countries must do more to advance the status of patient engagement for patient safety – there is an implementation gap. Although it is recognised that patient engagement in health care is important, WHO states that patient engagement for patient safety requires more acceptance and falls behind in terms of priority. The report is an excellent one, creating an important agenda for change.
Keeping with global patient engagement as a theme, the Organisation for Economic Co-operation and Development (OECD) has published a report on Patient Engagement for Patient Safety (Kendir et al, 2023). This takes a global approach, spelling out the main research findings, drawing together themes and making recommendations. It includes discussions on:
- The pivotal need for patient engagement for patient safety
- Measurement of patient safety from the patient perspective
- The state of the art of engaging patients for patient safety
- Embedding patient involvement in national strategies for patient safety and quality.
Key findings include that up to one in six patients reported safety incidents and up to 8% experienced medication errors. There is limited but growing evidence on the return on investment of patient engagement for patient safety.
Most countries engage patients or citizens during the development cycle of patient-safety initiatives, but the level of engagement varies both within and across countries. Most countries have a legal right to safe patient care, but just over half reported having mechanisms in place to enforce that right. Seven key recommendations are made in the report, including:
- Building trust for safer health care through stronger patient and family engagement
- Institutionalising patient engagement for patient safety
- Establishing better platforms and networks for sharing experiences and good practices in patient engagement
- Strengthening patient engagement for patient safety at institution and clinical levels.
These are all good recommendations and, taken with WHO (2023), there can be seen a global push and trajectory for patient engagement for patient safety.
Nearer to home
The NHS has been no slouch when it comes to developing policies to better engage patients in patient safety. There is the Patient Safety Incident Response Framework (PSIRF) that supports guidance on engaging and involving patients, families and staff following a patient safety incident (NHS England, 2022). This was published in partnership with the Healthcare Safety Investigation Branch (HSIB) - now replaced by the Health Services Safety Investigations Body (HSSIB) – and Learn Together.
The guidance is detailed and thorough advice and has the potential to enhance patient rights, make care safer and further the development of an NHS patient safety culture. There is a lot of information here for health professionals and others to digest and implement. Alongside the advice given in parts A and B, it outlines nine principles when designing systems and processes for engaging and involving those who are affected by patient safety incidents, which are (NHS England, 2022: 9-10):
- Apologies are meaningful
- Approach is individualised
- Timing is sensitive
- Those affected are treated with respect and compassion
- Guidance and clarity are provided
- Those affected are ‘heard’
- Approach is collaborative and open
- Subjectivity is accepted
- Strive for equity.
Part A of the guidance discusses creating the right foundation and the topics addressed include leadership, training and competencies, and support systems. Part B discusses the engagement and involvement process at various defined stages.
The guidance is excellent and well considered. The key measurement of its success will be how well it is implemented in an NHS that has been struggling with developing a proper patient safety culture for many years and suffers from recurrent major patient safety crises. The problems of inadequate staff resourcing, workload pressures, the myriad calls on scarce NHS resources all need to be taken into account when viewing the guidance.
The operating context of the NHS and the problems it faces are essential context when viewing PSIRF initiatives and guidance. Although patient engagement matters may well look excellent on paper, the key indicator of success will be in their implementation.
PSIRF reflections
The charity, Patient Safety Learning, published a blog post giving some excellent reflections on the PSIRF and patient engagement, based on a recent discussion at a patient safety management network.
The blog (Patient Safety Learning, 2023) considers possible implications of increasing engagement with families and patients. A resourcing and capacity issue linked to the increased work involved in engaging with families is identified and discussed. It is stated that across some organisations there is a huge gap in family liaison and support, and that extends to PSIRF. Other issues discussed include whether the language and approach of PSIRF create barriers for patients:
‘It was also pointed out that the proportionate approach that PSIRF promotes presents us with a big gulf in the nature and approach we take to patient and family engagement. The level of engagement will depend on the severity and impact of avoidable harm, meaning patients involved in incidents that don't reach the threshold for a patient safety incident investigation (PSII) may not receive the answers and support they need.’
The discussion provides a valuable reality check on the direction that the NHS is taking on patient engagement, PSIRF and patient safety.
Conclusion
Properly engaging patients and empowering them in patient safety systems is never going to be easy. It is a universal good to involve them properly, but it is much easier said than done in practice. This is because there are so many variable factors that can impact on the relationship between patient and health professional or health system.
The care context and prevailing culture must also be factored in. We can see from PSC (2023) that a seismic shift is needed in the way the voices of patients and their families are heard in the NHS and that much needs to be done. Kirkup (2022) shows the urgent need for this to happen.
WHO (2023) and Kendir et al (2023) identify global issues with patient engagement and patient safety, pointing out challenges and opportunities. Patient Safety Learning (2023) shines an important light on the realities of patient engagement, patient safety and the PSIRF.
There is both global and national momentum for involving patients more in patient safety process, practices and more generally in their own care and treatment. The NHS has been embarked on this journey for a long period of time and only patchy progress has been made. Hopefully, that will change through the PSIRF initiative.