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This blog in the BMJ, recognises that bullying also occurs with in patient advocacy role and the patient community.

Definition The authors of this paper have developed a definition, including both a short-form and a long-form definition. Here is the short-form and the long-form can be found in the full paper: Patient and family* engagement in the ICU is an active partnership between health professionals and patients and families working at every level of the healthcare system to improve health and the quality, safety, and delivery of healthcare. Arenas for such engagement include but are not limited to participation in direct care, communication of patient values and goals, and transformation of care processes to promote and protect individual respect and dignity. PFE comprises five core concepts: Collaboration, Respect and Dignity, Activation and Participation, Information Sharing, and Decision Making. Brief summaries of the core concepts are presented in Table 1 and depicted visually in Figure 1. *Family is broadly defined to include all the individuals whom the patient wants involved in his/her care, regardless of whether they are related biologically, legally, or otherwise; if the patient is noncommunicative, health professionals will make their best effort to identify and include the individuals whom the patient would want involved in his/her care.

When considering the persistence of unsafe care, a recurring theme that emerges is a failure to involve patients in their own care. Patient safety concerns raised by patients and family members are too often not acted on and, when harm occurs, they are often left out of the investigation process. As set out in Patient Safety Learning’s A Blueprint for Action, we share the view that patient engagement is key to improving patient safety, with this forming one of our six foundations of safer care.[1] The NHS Patient Safety Strategy identifies the involvement of patients in patient safety “throughout the whole system” as a key part of achieving its future patient safety vision.[2] The strategy includes plans to create a patient safety partners framework; earlier this year, the NHS published a consultation on its draft Framework for involving patients in patient safety.[3] In this blog, we will provide a summary of our feedback to the consultation. You can find our full submission at the end of this blog. Involving patients in their own safety The NHS Framework is divided into two parts, the first of which sets out the broad approach that should be taken to involving patients in their own healthcare and safety. We particularly welcome its emphasis on: encouraging patients to ask questions; if problems occur, the importance of providing information and help to maintain patients’ safety; the role of patient incident reports and complaints as a source of learning. In our response, we fed back with our thoughts on improvements in two specific areas - complaints and patient safety incident reporting. Complaints We share the view set out in the Framework that patient complaints should be viewed as “a valuable resource for monitoring and improving patient safety”.[3] We believe it’s important the Framework is joined up with the ongoing work of the Parliamentary and Health Service Ombudsman (PHSO), who have recently completed a consultation on a new Complaints Standard Framework for the NHS.[4] We believe that this presents an opportunity to embed patient safety into these processes and we responded to the PHSO consultation highlighting this. Patient safety incident reporting The Framework highlights the importance of patients reporting patient safety incidents, noting that the future introduction of a new Patient Safety Incident Management System will create “new tools to more easily participate in the recording of patient safety incidents and to support national learning”.[3] We believe more needs to be to be done to address the cultural barriers that deter patients from reporting concerns. Patients, carers and families need to feel assured that their stories and testimonies are welcome. Alongside this, it is crucial that, when concerns are reported, they are used to inform the assessment of risk and patient safety. As noted in the Cumberlege Review, not only are incidents not being reported but the existing systems “cannot be relied upon to identify promptly significant adverse outcomes arising from a medication or device because it lacks the means to do so”.[5] Patient Safety Partners The second part of the Framework is concerned with the newly proposed role of Patient Safety Partners (PSPs) in NHS organisations. PSPs would formally participate in safety and quality committees, patient safety improvement projects and investigation oversight groups. In our consultation response, we highlighted several areas where we feel these proposals require strengthening if they are to be successful. Training and guidance for staff The Framework rightly acknowledges the importance of having appropriate training and guidance for staff to help support the new PSP roles, pointing towards the new National patient safety syllabus as a key source. We have concerns that the National patient safety syllabus, in its current form, does not have a strong enough focus on patient involvement to provide this support. We highlighted the need for a greater emphasis on the skills and knowledge required to understand why and how patients can be actively involved in patient safety in our response to the consultation on the draft syllabus earlier this year.[6] We believe the syllabus could be significantly strengthened by drawing on further research and resources available in this area, such as the World Health Organization (WHO) Patient Safety Curriculum Guide.[7] Support and peer networks for PSPs We believe there needs to be more clarity about the induction and training that would be made available to PSPs. We also make the case that PSPs need access to networks with their peers PSPs in other organisations, enabling them to share good practice for safety improvement and receive support from others. We believe that it would be beneficial to create these networks alongside the new PSP roles. We suggest it would be helpful to draw on experiences of other programmes involving patients in patient safety, such as the WHO Patients for Patient Safety programme in the UK and the Canadian Patients for Patient Safety programme.[8] [9] Patient Safety Specialists The Framework makes brief reference to the relationship between future PSPs and the newly proposed Patient Safety Specialists, which all trusts and CCGs have been asked to put in place by the end of November.[10] We believe that if Patient Safety Specialists are to work effectively in organisations then these roles will need to be filled by leaders with expertise in patient engagement. Responding to a consultation earlier this year, we commented that those filling these roles will need strong skills and experience.[11] We also believe the Framework should place a great emphasis on the role of Patient Safety Specialists in supporting the work of PSPs. Co-production In our feedback, we also argue that there should be a strong emphasis on co-production with PSPs and more broadly throughout this Framework. ‘Co-production’ is an activity, an approach and an ethos which involves members of staff, patients and the public working together, sharing power and responsibility across the entirety of a project.[12] In our view, projects and patient safety programmes should always be co-produced with patients where possible. What needs to be included in the Framework As well as commenting on the specific proposals of the Framework, we identified two additional areas which we believe should be added to it: 1. Measuring and monitoring performance Patient Safety Learning believes that, to make improvements in the involvement of patients in patient safety, we need to be able to clearly measure and monitor our progress. Publicly reporting on changes and improvements made through patient involvement and patient safety allows for sharing examples of good practice. It would also mitigate against concerns that the role of PSP could become tokenistic in some organisations, resulting in little real impact. 2. Restorative Justice Many national healthcare systems and organisations are actively listening to, and engaging with, patients for learning through restorative justice. Restorative justice in healthcare allows patients to be heard, listened to, and respected. By patients, clinicians, healthcare leaders and policy makers engaging with one another on patient safety, it can help to establish trust with the patient. This can also provide the impetus for learning and action to be taken to prevent future harm. We commend the approach adopted by New Zealand’s Ministry of Health in how it responded to harm from surgical mesh and the impact this has had on improvements in patient safety.[13] Closer to home, there are some beacons of good practice within the NHS, such as the Mersey Care NHS Foundation Trust.[14] We believe that the NHS should do more to share and promote a just and learning culture, asking organisations to develop and publish goals on their progress. Only one piece of the puzzle We welcome and recognise the positive steps being set out in the Framework to improve patient involvement in patient safety within the NHS. Our comments and suggestions for improvement are mainly centred around the need to ensure other key pieces are in place. Significant change is still needed. The Framework focuses on increasing patient involvement in governance and decision-making. This wider need for change in how we engage patients in patient safety is outlined in the recently published WHO Global Patient Safety Action Plan 2021-2030.[15] It promotes a range of actions for governments and healthcare organisations to help engage patients and their families in patient safety; we would expect to see this reflected in the work of NHS England and NHS Improvement. Strengthened as we suggest, we believe that the Framework could make a big difference to improving patient involvement with patient safety. References Patient Safety Learning. The Patient-Safe Future: A Blueprint for Action, 2019. NHS England and NHS Improvement. The NHS Patient Safety Strategy: Safer culture, safe systems, safer patients, July 2019. NHS England and NHS Improvement. Framework for involving patients in patient safety, 10 March 2020. PHSO. Making Complaints Count: Supporting complaints handling in the NHS and UK Government Departments, July 2020. The Independent Medicines and Medical Devices Safety Review. First Do No Harm, 8 July 2020. Patient Safety Learning. Patient Safety Learning’s response to the National patient safety syllabus 1.0, 28 February 2020. World Health Organization. Patient Safety Curriculum Guide, 2011. Action Against Medical Accidents. Patients for Patient Safety, Last Accessed 15 October 2020. Canadian Patient Safety Institute, Patients for Patient Safety Canada, Last Accessed 16 October 2020. NHS England and NHS Improvement. Patient Safety Specialists, Last Accessed 15 October 2020. Patient Safety Learning. Response to the Patient Safety Specialists consultation, 12 March 2020. Dr Erin Walker, What should co-production look like?, 1 April 2019; National Institute for Health Research, Guidance on co-producing a research project, March 2018. Jo Wailling, Chris Marshall & Jill Wilkinson. Hearing and responding to the stories of survivors of surgical mesh: Ngā kōrero a ngā mōrehu – he urupare (A report for the Ministry of Health). Wellington: The Diana Unwin Chair in Restorative Justice, Victoria University of Wellington, 2019. Mersey Care NHS Foundation Trust. Just and Learning Culture – What it Means for Mersey Care, Last Accessed 16 October 2020. World Health Organization. Global Patient Safety Action Plan 2021-2030: Towards Zero Patient Harm in Health Care, 28 August 2020.