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In this blog, Siân Slade shares how, through her research interest into the difficulties of navigating the healthcare system in Australia, she created a policy and advocacy project: #NavigatingHealth. The aims of the project are to streamline the silos and address the fragmentation of healthcare by bringing together all those who are developing solutions to enable patients and carers to better navigate healthcare journeys.  Background About 10 years ago, I listened to a friend’s experience navigating cancer and puzzled over the challenges encountered. These made me question my prior assumption of 'patient-centricity' across healthcare. In 2015, the Organisation for Economic Co-operation and Development (OECD) released a report highlighting the complexities of the Australian healthcare system. This led me to realise that while we do have patient-centred care, it is often provider dependent, not system-wide, and relies on the patient (or carer) to navigate the system; a time when individuals are at their most vulnerable. Given 'the standard you accept is the standard you walk past”, I decided to do 'my bit' to address this. I enrolled in a Master of Public Health, researching healthcare navigation in Australia. I found there was a fragmented approach to try and address an already fragmented problem. This led me to embark on a PhD as well as develop a policy and advocacy platform: #NavigatingHealth. Setting up a national network and community of practice My focus has always been on a practical approach that solves problems for individuals but also seeks to understand how to scale these at a systems level to sustain change in the long-term. If this was a known problem, why was nothing being done to address it? Surely this was something government were addressing... or there must be an app? I spoke to lots of people—patients, carers, speakers at conferences, those who had written books of their healthcare experience and, yes, those developing apps. Everyone agreed it was a problem, but nothing was addressing the totality of the problem. The problem was not just in navigating healthcare, but also the challenges navigating related systems, such as those for people with disabilities, or for aged care, as well as social services and education. #NavigatingHealth started life as two, 60-minute webinars held in mid and late September 2021, supported by the Australian Disease Management Association. The inaugural webinar speakers provided vignettes across a life journey—from childhood through to getting older—based on their own lived-experiences as patients, carers or professionals (not-for-profit, health services and government). The positive reception of the webinars led to setting up a bimonthly national network and community of practice in Australia that ran until the end of 2024. The meetings were deliberately not recorded to build a safe space for people to share ideas, build tacit (word of mouth) knowledge and a like-minded solutions focused community. Summaries of all the events and speakers are available on the #NavigatingHealth project page. In health, information and projects evolve. Building an online community was low-cost and accessible to everyone. The success of the Australian approach led to a series of global webinars using the same format of expertise provision from individuals in research, policy, and advocacy and health services. The first global webinar was held in 2022 attracting over 20 countries. Connecting and collaborating The 'glocal' community continues to grow. Projects are constantly evolving, elevating and expanding as well as exiting often impacted by funding constraints. In the spirit of a complex adaptive learning health system, core to our success is the community knowledge built through relationships, trust, like-values and non-linear interactions. Taking an approach that is resourceful versus one requiring constant resourcing (we use accessible tools such as LinkedIn and more recently Bluesky) to provide an effective, free platform to keep individuals in touch with one another. Our dedicated #NavigatingHealth project page on the Nossal Institute for Global Health website at the University of Melbourne acts as a central hub for events and resources. The genesis during the pandemic and expansion virtually through Teams and Zoom, as well as in-person post-pandemic, has enabled different ways to expand the national community, the global network and we welcome all-comers. The project is voluntary and our success is based on linking people, developing relationships, sharing expertise, maintaining momentum and the opportunity we all have to impact into #NavigatingHealth. The annual forums, 2024 #NavigatingHealth Simplifying Complexity and 2025 #NavigatingHealth Enabling Patients, System-Wide, focused on bringing together colleagues nationally in Australia. The in-person workshops created the opportunity to build community, share ideas, leverage learnings and also provide educational content. These collaborations have allowed development of materials for curriculum and teaching, and an evolving conversation about the importance of systems-thinking. We developed a short global project collecting stories from individuals who are happy to be involved. Our video, NavigatingHealth - why this matters, provides a glimpse of our approach. Looking forward The Future of Health Report published in 2018 highlights that our health systems, locally and globally, will change from 'one size fits all' to one that is personalised. The challenge is how? Future of Health Report, CSIRO 2018. The 'secret sauce' is that by working collaboratively we can all be part of evolving and effecting systems change. The work is underpinned by equity and a focus on enabling early access to care, addressing barriers, such as financial or cultural constraints, and helping to make visible information asymmetries and power imbalances to ensure effective collaboration and co-production. Building on the success of our past forums, planning for 2026 is underway. Block out 1 April 2026 in your calendar for the inaugural #NavigatingHealth Day! Our collective expertise is our power—let’s do this! Want to know more? Please get in touch with Siân at [email protected] or via LinkedIn. Further reading on the hub: The challenges of navigating the healthcare system How the Patients Association helpline can help you navigate your care Lost in the system? NHS referrals

This blog provides an overview of a Patient Safety Partners Network meeting on the 4 February 2024. At this meeting, members of the Network were joined by Professor Henrietta Hughes, Patient Safety Commissioner for England. The Network includes Patient Safety Partners, in both paid and voluntary roles within NHS organisations, whose role is to improve patient safety. Patient Safety Learning provides a monthly drop-in session, sometimes with guests, to talk through topical and relevant issues. This facilitates information sharing, peer support and safe space for discussion. The role of Patient Safety Commissioner for England was created by the UK Government after a recommendation from the Independent Medicines and Medical Devices Safety Review, chaired by Baroness Julia Cumberlege. This Review examined the response of the healthcare system in England to the harmful side effects of three medical interventions: hormone pregnancy tests, sodium valproate and pelvic mesh implants. It described the healthcare system as being “disjointed, siloed, unresponsive and defensive” and found that it did not “adequately recognise that patients are its raison d’etre”. The Patient Safety Commissioner acts as a champion for patients, leading a drive to improve the safety of medicines and medical devices. Role and work of the Patient Safety Commissioner Opening the meeting, the Patient Safety Commissioner, Professor Henrietta Hughes, outlined the background to her post, reflecting that since her appointment in 2022: She has worked with two governments, a wide variety of different NHS organisations and national healthcare bodies such as the Care Quality Commission, NHS England and the Health Services Safety Investigations Body. There has been significant changes made to improve information provided to women of childbearing potential taking teratogenic medications (which carry risks if taken during pregnancy). The roll-out of Martha’s Rule has proceeded at pace across 143 pilot sites in the NHS. Henrietta spoke about the importance of improving how patients are listened to by the healthcare system and the need to place the patient voice at the heart of decision making. Working towards this, she noted that her strategy includes a focus on advocate for partnerships which embed patient safety and patient voice through the healthcare system. Her strategy identifies the roll out of Patient Safety Partners across England as a key element of this. She also spoke about her launch of seven Patient Safety Principles, published last year following a public consultation. She talked about her optimism of seeing these put into use to support planning and collaborative working with patients as partners throughout the healthcare system. She welcomed the opportunity to meet Patient Safety Partners and praised the Network and the work it does to engage, support and inform. Network discussion Subsequently the meeting opened out into a question and answer session which touched on the following areas. Support and impact There was a discussion about what more can be done to maximise the impact of Patient Safety Partners and improve the level of support they receive from the NHS. Henrietta spoke about the parallels between this and the time it took to embed Freedom to Speak Up Guardian roles in the health service. She was previously National Guardian. She also reflected positively on how new NHS planning guidance could support this, with its emphasis on patient experience. Role clarity There was a conversation about how the role of Patient Safety Partners in organisations can be strengthened. It was noted that existing guidance does not specify in significant detail how these roles should work, which can lead to a lack of clarity for Patient Safety Partners. Henrietta reflected on the need to ensure that what is said about ambitions for patient involvement and patient voice at a Board level is also reflected in the practical actions that trusts undertake. Training Henrietta shared her views on how Patient Safety Partners could potentially utilise the Network both to support and learn from each other. She noted the value of being able to understand what training is being provided at different trusts, which Patient Safety Partners could then use to return with new thoughts and ideas to their own organisations. She also pointed to her Patient Safety Principles as a framework for establishing where there may be gaps in what their organisations currently do. Retaining knowledge There was a discussion about how Patient Safety Partners can build on and share their experience once their terms come to an end. This included considering how they might use this in other roles in the NHS, such as governors and non-executive director roles, and the importance of ensuring knowledge and experience is shared with new incoming Patient Safety Partners. Implementation of Martha’s Rule Henrietta highlighted the progress made to date in implementing Martha’s Rule in the NHS. She noted that while it is currently early days, initial data showed that it was already supporting clinical reviews leading to changes in care and safety improvements. She emphasised that this showed the wider value of including patients as part of the healthcare team. Concluding thoughts Hopes and aspirations for the Government’s forthcoming Ten Year Health Plan was also a topic of discussion. Henrietta reflected on the need for the voice of patients to be a core part of this. She is continuously advocating for this in her engagement with Ministers and the leaders of national organisations and regulators. Closing the session, she said that she thought the Patient Safety Partner Network was fantastic and she was pleased that so many people regularly joined these meetings to share valuable insights and experiences. How to join the Patient Safety Partners Network The Patient Safety Partners Network meets monthly in a virtual capacity and now includes more than 160 Patient Safety Partners. These meetings provide a supportive and safe space for Patient Safety Partners to: discuss barriers and opportunities share successes discuss how they can use their collective voice to make a difference for patient safety. Only Patient Safety Partners working within NHS organisations in England can join, although experts are often invited to present or discuss specific topics. If you are a Patient Safety Partner, you can find out more about the Patient Safety Partner Network, and how to join here. If you would like to attend a Patient Safety Partners Network meeting as a guest speaker, please contact us at [email protected]. Related reading Patient Safety Partners: a toolkit of resources – this webpage brings together a range of different resources designed to share insights and information about the Patient Safety Partner role.

On 23 October 2024, the Patient Safety Commissioner for England published a set of Patient Safety Principles. In this blog, Patient Safety Learning sets out its reflections on these principles, highlighting key points included in its response as part of the public consultation process earlier this year. The Patient Safety Commissioner’s new Patient Safety Principles are intended to act as a guide for leaders at all levels on how to design and deliver safer care for patients and reduce avoidable harm, in a just and learning culture.[1] They are as follows: Create a culture of safety Leaders have a responsibility to lead by example to inspire a just and learning culture of patient safety and quality improvement. They should set out to keep people safe through the adoption of a safety management system and by embedding continuity of care, a culture of compassion and civility, effective listening, and restorative practice. Put patients at the heart of everything Leaders should put the patient at the heart of all the work that they do, with patient partnerships the default position at all levels of the organisation. They should consider the needs of patients and communities to deliver person-centred care. Leaders should ensure that the patient voice is central in the design of services, in obtaining fully informed consent and to the implementation of shared decision making. Treat people as equals People should be treated with respect, equity and dignity. Leaders should incorporate the views of all, and proactively seek and capture meaningful feedback from patients, workers, and communities, acknowledging that those from disadvantaged groups may need specific support and encouragement to contribute. They should act upon feedback, to embed equity of voice. Identify and act on inequalities Health inequalities, and their drivers, should be identified and acted upon at every stage of healthcare design and delivery to drive improvements in patient safety and experience. Identify and mitigate risks Targeted and coordinated action should be directed towards patient safety risks. Patients, workers and communities should be encouraged and empowered to proactively identify and speak up about risks, hazards and potential improvements. Leaders should promptly escalate new and existing risks to the most appropriate person or body. Be transparent and accountable Leaders should acknowledge that creating a culture of safety requires honest, respectful and open dialogue, where candour is the default position. This transparency should support a model of continuous improvement, which learns from both successes and events, and ensures that patients, workers and communities do not face avoidable harm due to a cover up culture. Use information and data to drive improved care and outcomes for patients and help others to do the same Leaders should enable patients to have access to their personal and other data to help them improve their own care. They should ensure that good quality data is collected and meets the needs of all patients, including those from underrepresented and inclusion health groups. Workers should be supported to use and share information and data to drive improved care and outcomes for patients, in accordance with the Caldicott Principles. Shared principles These principles were subject to a publication consultation, which we responded to on the 5 September 2024. You can find our full comments on each principle here. We welcome the principles that the Patient Safety Commissioner has set out today. There is significant overlap between these seven principles and the six foundations of safer care we identify in our report, A Blueprint for Action.[2] For example: “Put patients at the heart of everything” aligns with our foundation on “Patient engagement”. We believe that patients should be engaged for safety at the point of care, if things go wrong, in improving services, advocating for changes and in holding the system to account. “Use information and data to drive improved care and outcomes for patients and help others to do the same” aligns with our foundation on “Data and insight for patient safety”. We would also consider that these principles, when taken together, align with our view set out in A Blueprint for Action about the need for a transformation in our approach to patient safety placing this as a core purpose of health and care. The Patient Safety Commissioner’s proposed principles also share much in common with the World Health Organization’s (WHO) Global Patient Safety Action Plan.[3] This sets out a vision of a “world in which no patient is harmed in healthcare, and everyone receives safe and respectful care, every time, everywhere” and a goal of achieving the maximum possible reduction in avoidable harm as a result of unsafe care. There is again significant overlap between the points included in its seven strategic objectives and these principles. The principle “Put patients at the heart of everything” also reflects a wider international initiative in patient safety, the WHO Patient safety rights charter that was published earlier this year.[4] The Charter aims to outline patients’ rights in the context of safety and promotes the upholding of these rights, as established by international human rights standards, for everyone, everywhere, at all times. Areas not covered by the principles In our consultation response we also highlighted several areas not included in these principles. We would suggest these should also be considered when creating guidance for senior leaders on how to deliver safer care for patients and reduce avoidable harm. Shared learning This is one of the six core foundations of safer care we identify in A Blueprint for Action. Healthcare is systematically poor at learning from harm. If patients are to be safer, we need people and organisations to share learning when they respond to incidents of avoidable harm, and when they develop good practice for making care safer. It is vital that patients, clinicians, managers, and health and social care system leaders share learning about safety practice and performance to make care safer. This was the key driving force behind the creation of the hub, our platform to share learning for patient safety. Patient safety standards One of the primary reasons for the persistence of avoidable harm is that healthcare does not have or apply standards of good practice for patient safety in the way that it does for other issues. Standards that do exist are insufficient and inconsistent. At Patient Safety Learning, we believe that health and social care organisations need to have standards for patient safety. These can inform 'what good looks like' and enable organisations to self-assess against them.[5] Designing for safety and safety in use Treating patient safety as a core purpose of health and care requires us not just to respond to and mitigate the risk of harm, but also to design healthcare to be safe for patients and the staff who work within it. This would include greater use of human factors expertise and systems thinking to inform the safe design, safety management and approaches to investigating unsafe care. This is also covered in depth as part of the Global Patient Safety Action Plan’s second strategic objective, ‘High-reliability systems’. Challenge of implementation Publishing these principles, the Patient Safety Commissioner said that: “The Patient Safety Principles act as a guide for leaders at all levels on how to design and deliver safer care for patients and reduce avoidable harm, in a just and learning culture. They are relevant to healthcare providers as well as commissioners, regulators, manufacturers, and the broader supply chain. The principles provide a clear framework for planning, decision-making, and working collaboratively with patients as partners.”[1] While we welcome this aspiration, how these are used in practice will determine their success. We need everyone—politicians, policymakers, patients, families and communities, clinicians, managers, system and professional regulators, researchers and academics, and health and social care system leaders—involved in this effort. All too often when it comes to patient safety, there exists an implementation gap between what we know improves patient safety and what is said about this compared to what is done in practice.[6] An example of this can be seen concerning the first of these principles, “Create a culture of safety”. This emphasises the role of leaders having a responsibility to lead by example to inspire a just and learning culture of patient safety. A similar aspiration is also identified in the NHS Patient Safety Strategy, which includes patient safety culture as one of the two foundations required in working towards its safety vision “to continuously improve patient safety”.[7] However, despite this commitment in the NHS, blame cultures and a fear of speaking up continue to persist. As highlighted in our recent report analysing the NHS staff survey results, there often exists a significant gap in this respect between what organisations say about their approach to safety culture and how staff feel.[8] If these principles are to be realised, they will need not just to be accompanied by a endorsement from the Department of Health and Social Care and the NHS, but also clear action. References Patient Safety Commissioner for England, Patient Safety Principles, 23 October 2024. Patient Safety Learning. The Patient Safe Future: A Blueprint for Action, 2018. WHO. Global Patient Safety Action Plan 2021-2030, 3 August 2021. WHO. Patient safety rights charter, 18 April 2024. Patient Safety Learning. Standards, Last accessed 4 September 2024. Patient Safety Learning. Mind the implementation gap: The persistence of avoidable harm in the NHS, 7 April 2022. NHS England. The NHS Patient Safety Strategy: Safer culture, safer systems, safer patients, July 2019. Patient Safety Learning. We are not getting safer: Patient safety and the NHS staff survey results, 26 March 2024.

As part of the Patients Association's Patient Partnership Week, Dr Henrietta Hughes, Patient Safety Commissioner, discusses her work with Chief Executive Rachel Power. Since last year's Patient Partnership week the Commissioner has led on the introduction of Martha's Rule, published the Hughes Report, which sets out redress for patients harmed by sodium valproate and pelvic mesh, and, just recently, opened a consultation on Principles of Better Patient Safety, which align with our principles on patient partnership. Register

This blog provides an overview of a Patient Safety Management Network (PSMN) meeting discussion on 9 June 2023. At this meeting, members of the Network were joined by Dr Henrietta Hughes, Patient Safety Commissioner for England. The PSMN is an informal voluntary network for patient safety professionals in England. Created by and for patient safety managers, it provides a weekly drop-in session with guests to talk through issues of importance to patient safety managers, providing information, peer support and safe space for discussion. Find out about the network. The office of Patient Safety Commissioner for England was created by the UK Government following a recommendation from the Independent Medicines and Medical Devices Safety (IMMDS) Review, chaired by Baroness Julia Cumberlege. The Review examined the response of the healthcare system in England to the harmful side effects of three medical interventions: hormone pregnancy tests, sodium valproate and pelvic mesh implants. Role and work of the Patient Safety Commissioner Opening the meeting, the Patient Safety Commissioner, Dr Henrietta Hughes, outlined the background to her post, explaining that her role is: to seek improvements to patient safety around the use of medicines and medical devices to amplify patients’ voices and champion the value of listening to patients. Henrietta noted that much of her initial activities have involved collaborating closely with patients and families impacted by the medical interventions covered by the IMMDS Review. She spoke about working with Emma Murphy and Janet Williams from the Independent Fetal Anti Convulsant Trust (In-FACT), who have both had children affected by exposure to sodium valproate during pregnancy. She emphasised the importance of their campaigning efforts in helping to support a strengthening of regulations so that valproate medicines cannot be used in women of childbearing potential unless a Pregnancy Prevention Programme is in place. She also spoke about their work with the World Health Organization and other health systems internationally to reduce the risk of children being born exposed to sodium valproate. She moved on to highlight working with Kath Sansom from Sling the Mesh, who was seriously harmed following a pelvic mesh implant. Henrietta spoke about how the Patient Safety Commissioner’s office had developed, in partnership with the patient campaign groups Sling the Mesh and the Rectopexy Mesh Victims and Support, a letter for patients to help GPs identify the complications of pelvic mesh. It explains signs and symptoms of women presenting with pelvic mesh-related conditions and, if required, where to signpost them for further help. Talking about her first few months in office, Henrietta said that she had already been contacted about a wide range of safety issues relating to medicines and medical devices, varying from painful gynaecological procedures such as hysteroscopy to the after effects of medications such as isotretinoin. She also outlined culture change as another key area of initial focus in her work, noting that she was: Working with healthcare leaders to ensure the patient voice is heard and making it easier to speak up, tackling the issue of epistemic injustice in cases of healthcare harm where professionals fail to treat patient reports seriously. Supporting professions to improve consent and shared decision-making processes, in particular working with all regulators to attempt to align approaches to consent across different healthcare professions. She spoke about promoting the benefits of patient participation, for patient experiences, outcomes and the wider efficiency of the healthcare system, and the need to strengthen and improve responses to patient feedback. Henrietta also emphasised the importance of patient safety being on healthcare leaders’ agendas, with a greater focus on stopping harm in advance by identifying and managing the causes and controls. Network discussion Subsequently the session opened out into a broader discussion of patient safety and patient involvement, in which the following issues were raised: What we can do to move away from an adversarial approach to staff who raise patient safety issues; noting that where this exists for staff it may often be an even greater issue for patients and families. Acknowledgement that much more work needs to be done to create a culture where it is safe to speak up. This was highlighted by the latest National Guardian report, which raises concerns from the most recent NHS Staff Survey that we are actually going backward in this area, which Henrietta noted was ‘extremely disturbing’. Considering how the healthcare system and organisations can better engage with patients raising safety concerns and valuable insights through groups on social media. Henrietta spoke about the challenge of the hierarchy of evidence when it comes to avoidable harm, where too often anecdotal patient experiences are dismissed when these can provide important patient safety insights. The importance of co-production and how you embed this, with an emphasis on the need for true leadership support for this to be successful. The value of exploring the role of restorative practice after avoidable harm, with Henrietta noting that she would soon be meeting with a team from New Zealand who have been working on this. The need for NHS patient involvement processes to not just focus on the role that staff can play in improving this, but also looking at creating opportunities for patients to raise concerns that do not simply end up in complaints processes. The value of patient safety insight and experiences that can be gained from sources external to the NHS, such as Care Opinion. The importance of linking up the work of the new Patient Safety Partners in organisations with Freedom to Speak Up Guardians. How implementing the new Patient Safety Incident Response Framework (PSIRF) is presenting opportunities to increase and improve patient involvement in incident investigations and gain important insights and learning as part of this. How to get involved in the Patient Safety Management Network Are you a patient safety manager interested in joining the Patient Safety Management Network? You can join by signing up to the hub today. When putting in your details, please tick ‘Patient Safety Management Network’ in the ‘Join a private group’ section. If you are already a member of the hub, please email [email protected].

Speakers for this session are Dr Tracey Herlihey, head of patient safety incident response policy at NHS England, and Dr Henrietta Hughes OBE, patient safety commissioner. Dr Herlihey will discuss how the patient safety incident response framework (PSIRF) is changing the culture amongst healthcare workers and what this means for individuals. Dr Hughes will discuss the events leading up to the creation of the patient safety commissioner role, her priorities, the role of leaders and ‘what matters to you.’ That is, why we must listen to patients and what happens if we don’t. Register