Patient Safety Partner Network

In 2023, Patient Safety Learning established a Patient Safety Partners Network.  Patient Safety Partners had been participating in the Patient Safety Management Network and many felt that a separate community of interest would also be invaluable.

The network provides a supportive and safe space to discuss the issues Patient Safety Partners face, share successes and discuss how they can use their collective voice to make a difference for patient safety. Only Patient Safety Partners can join, although experts are often invited to discuss issues at the monthly meetings.

Although there are some local Patient Safety Partners networks, to our knowledge there is no other national forum where people in this role can support each other and share insights. It now has over 130 members.

Survey

Discussions at the monthly drop-in meetings quickly focused on role clarity - the opportunities and barriers. To capture member insights, Patient Safety Learning developed a survey. The data from this survey gave a clearer picture of the different ways in which Patient Safety Partners are working around the country, and some of the challenges they face in fulfilling their role effectively, including the clarity needed to champion patient safety at every level of an organisation.

Members have commented that the survey results will be helpful to them in their discussions within their organisations and will provide insights for the wider patient safety community too.

Workshop

In discussing the survey, it was recognised that there would be great value in capturing in more detail where Patient Safety Partners are having impact in their trusts. The concept of a workshop was developed.

In April 2024, several members of the Patient Safety Partners Network attended the workshop to delve deeper into some of these conversations. The focus of the day, facilitated by Patient Safety Learning and AQUA, was the implementation of the Patient Safety Partner role and the question; “what does good look like?”

Attendees included national Patient Safety Partners as well as managers from trusts who had worked hard to integrate the role well.   

Many themes emerged from the rich and diverse conversations within the workshop and a huge amount of learning has been captured and will be shared more widely in the coming months through our global community platform the hub (sign up for free).

Key areas explored during the workshop:

• recruitment and internal readiness
• induction and training
• influencing and impact
• involvement
• culture
• purpose and measuring success.

Sadly, a recurring theme throughout the workshop discussions and network meetings has been the lack of role clarity many Patient Safety Partners have, and continue to, experience.

This blog focuses on role clarity, to reflect how Patient Safety Partners have consistently highlighted the importance of this. We will illustrate the challenges that stem from lack of clarity, as well as insights from good practice that can readily be adopted by other organisations.

Lack of clarity

Many Patient Safety Partners have expressed frustration at the lack of clarity around their role and purpose. This gap in information and support has affected them in several ways, causing uncertainty around:

• who they should be working with
• which meetings they should be attending
• the sort of work they should be involved in
• whether they are strategic partners or representatives
• what success looks like
• the training they should be accessing.

These challenges have been raised regularly, with many feeling that lack of clarity and guidance is preventing them from having the impact they would like.   

Patient Safety Partners shared some of their experiences:

"I am a Patient Safety Partner at two different trusts. One gives me a clear role, support and regular catch-up meetings. They also care about my emotional wellbeing. I cannot fault their commitment to PSIRF and the role of Patient Safety Partners. The other I was appointed to a year ago. I have had no clear guidance on what the role should be. I do not feel included and they don't seem to know what to do with a volunteer who has no clinical background. I feel I am adrift and am only there to tick a box."

"I wanted to make a difference as a Patient Safety Partner. To contribute to patients having an uneventful stay with the NHS, but I am fumbling in the dark with little guidance. It isn't clear what is expected of my role."

"I am amazed that the NHS appoints Patient Safety Partners and does not have a basic Risk Assessment course for us to attend."

Learning from good practice

It has become clear during the network meetings, workshop event and the  recent Patient Safety Partners survey, that there is a huge variation in how the Patient Safety Partner role has been embedded locally.

While many continue to feel unclear, poorly supported or left to carve their own way in their role, there are some excellent examples of organisations who have integrated the role well. Feedback from Patient Safety Partners within these organisations has been really positive, highlighting the value of clarity and guidance in enabling them to get involved and become true partners in improving patient safety.

Colin Fiske, Patient Safety Partner at United Lincolnshire Hospitals NHS Trust says:

"Our Trust approached the PSP role from the start with a strong implementation plan, a solid support structure in place and a clear commitment to listen to the patient voice. This has meant that as PSPs we have not only felt incredibly supported, but our voice has been listened to time and again. We feel valued not only by the Trust but by the staff and clinicians we continually engage with at all levels."

William Oldfield, Chief Medical Officer at Kingston Hospital NHS Foundation Trust says:

“Working with our Patient Safety Partners is pivotal to enhancing the quality of care we provide. Their unique insights and experiences enable us to identify and address safety concerns more effectively, ensuring that our system is safe and as responsible as possible.”

Key insights

The rich insights shared by well supported Patient Safety Partners and their managers, showed some clear elements that are needed to support the process.

These included steps that are taken before, during and after the Patient Safety Partner is appointed:

• clear role description and purpose
• time and resource invested in recruitment and planning
• internal preparation and education around the role
• senior management buy-in/sponsorship for the Patient Safety Partner role
• induction handbook
• invitations set up to key meetings
• introductions made to chairs of meetings and key staff
• regular meetings with a line manager
• links made with and/or a mentor and/or a buddy
• a shared understanding of what success looks like
• allowing room to shape and flex role within the broader remit.

These seemingly obvious and simple things make sure that Patient Safety Partners are not integrated in a tokenistic way or left feeling isolated. They can also help to welcome Patient Safety Partners into their new role, providing more clarity and guidance which enables them to contribute their skills and insights effectively.

Melanie Whitfield, Associate Director of Patient Safety, Clinical Governance and Risk Management at Kingston Hospital NHS Foundation Trust says:

“Clear role definition and guidance for Patient Safety Partners is crucial for effective, recruitment and engagement, to allow the voice of patient safety to be at the forefront. Without this, there is a potential for superficial acknowledgement of the role and a failure to enhance and improve patient safety or raise the profile of patient safety throughout the NHS. 

“Conversely, areas where organisations have established robust role clarity and structured guidance showcases the potential for significant improvements in patient safety and safety culture throughout the organisation. This best practice demonstrates the vital importance of empowering patient safety partners to raise the safety voice, providing them with the knowledge and support they need to contribute meaningfully to healthcare safety initiatives.”

Final thoughts

The Patient Safety Partner role was introduced to strengthen the involvement of patients in patient safety. Sadly, lack of clarity and guidance has been a barrier to progress for many Patient Safety Partners and this needs to be addressed as a priority. Without this investment, organisations risk losing an excellent resource that, as we have seen, has the potential to positively influence patient safety.

Helen Hughes, Chief Executive Officer at Patient Safety Learning says:

“Patient Safety Partners are one of the two core pillars of the NHS Framework for involving patients in patient safety. The Framework envisages them as having the potential to play a key role in embedding a patient-centred approach to safer healthcare.

“If they are to realise this potential, the volunteers who put themselves forward for these roles must be given clear responsibilities and realistic expectations, coupled with the support and commitment by their organisations. As the findings of the workshop indicate, echoed by our wider conversations with members of the Patient Safety Partners Network, too often this is not the case.”

At Patient Safety Learning, we continue to work with Patient Safety Partners to share insights and learning for patient safety. We will also be working with AQUA as part of their focus on supporting patient engagement. Together, we’ll be looking at how we can support organisations to gain impact from the Patient Safety Partner role. We would also like to thank the Royal College of Surgeons, Edinburgh their commitment to patient engagement and their hosting of the Birmingham workshop.

If you are interested in this area of our work, please get in touch at hello@patientsafetylearning.org.

Join the Patient Safety Partner Network

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 content@pslhub.org.

Most of the identified actions are linked to changing the culture to generate more patient-centred care and change the current reality, which looks predominantly from the perspective of the professionals and too little from that of the patients. Furthermore, none of the suggested actions fit within a sixth anticipated category, namely, ‘politics’. Future research should explore ways to implement a patient-centred care approach based on these actions. By doing so, space, money and time have to be created to elaborate on these actions and integrate them into the organisations’ structure, culture and practices.

Although we spend many of our waking hours communicating in various ways—writing, speaking, via technology, body language—communication is a skill not everyone performs as well as they can or as well as they think they do. This gap between perceived and actual communication skills can have significant repercussions, particularly when it involves patients.

The role of effective communication in patient safety

Effective communication is essential for ensuring patient safety in clinical trials and cancer care. Poor communication can lead to various negative outcomes, including lack of diversity in clinical trial enrolment, decreased adherence to treatment, patient dissatisfaction and inefficient use of resources. By fostering open, honest and clear communication, healthcare professionals can mitigate these risks and enhance overall patient safety.

Improving patient communication

1. Informed decision-making: Clear communication ensures patients fully comprehend the potential risks and benefits of participating in clinical trials. This informed consent process is crucial for patient safety as it empowers patients to make decisions that are in their best interest. Similarly, for patients to actively partner with their healthcare team regarding treatment decisions, education about available treatment options must be provided in terms patients can understand.
2. Adherence to treatment: Effective communication has been shown to improve patient adherence to treatment protocols. A study indicated that there is a 19% higher risk of nonadherence among patients whose physicians communicate poorly.[1] Improved adherence reduces the risk of treatment complications and enhances the efficacy of the treatment.
3. Management of side effects: Discussing potential side effects and how to manage them helps patients prepare for and cope with their treatment. This proactive approach may potentially reduce or prevent adverse events and improve patient safety by ensuring that side effects are promptly and effectively addressed.
4. Addressing barriers: Open communication helps identify and address barriers that might prevent patients from participating in clinical trials or adhering to their treatment plan. These barriers can include financial concerns, logistical issues or lack of support systems. By understanding and addressing these concerns, healthcare professionals can create a safer and more supportive environment for patients.

Strategies to improve patient safety through communication

1. Build trust: Establishing a trusting relationship with patients is foundational. Use empathy and non-judgmental communication to create a safe space for patients to share their concerns and preferences.
2. Ask open-ended questions: Encourage patients to share detailed information about their experiences, concerns and expectations. Asking open-ended questions helps uncover important insights that can inform safer care practices.
3. Engaged listening: Truly listen to what patients are saying without interrupting. This demonstrates respect and ensures that patients feel heard and understood, which can significantly impact their sense of safety and trust in their care team.
4. Provide clear and comprehensive information: Ensure patients receive all the necessary information about their treatment, potential risks and the specifics of clinical trials or cancer treatment in a way that is easy to understand. Avoid medical jargon and check for understanding to ensure clarity.
5. Cultural sensitivity: Be aware of and responsive to the cultural and language needs of patients. This can involve providing translation services or culturally relevant information to ensure that all patients have equitable access to safe care.
6. Follow-up and feedback: Regularly check in with patients to monitor their progress, address any new concerns and adjust care plans as needed. This continuous feedback loop helps maintain patient safety throughout the treatment process.

Conclusion

Improving communication between healthcare professionals and patients is a vital strategy for enhancing patient safety in clinical trials and cancer care. By building trust, actively listening, providing clear information and addressing barriers, healthcare professionals can create a safer and more effective care environment.

Reference

1. Zolnierek KB, Dimatteo MR. Physician communication and patient adherence to treatment: a meta-analysis. Med Care 2009 Aug;47(8):826-34. doi: 10.1097/MLR.0b013e31819a5acc. PMID: 19584762; PMCID: PMC2728700

View Tambre's poster here.

What does lived experience mean?

There are broadly 3 kinds of lived experience: lived, living, and learned.

The lived experience is when an individual has been through a health issue (either physical or mental), has been successfully treated, and that issue has been resolved. The living experience is when an individual is undergoing treatment, but there is no immediate or foreseeable resolution in sight. The learned experience is when an individual is close to another person who is going through, or has been through a health issue, and that proximity has given the person an insight into that healthcare pathway. Everybody reading this will meet at least one of these criteria and this is the starting point for learning how best to use the concept of lived experience.

Sharing insights and experiences

In my own life I have direct experience in all three categories and experience of patient safety issues with all three. One of my lived experiences is my personal journey with cancer which, owing to shortcomings in the structure of Primary Care Networks had an unpromising start. I visited my GP over a period of nearly twelve months with a persistent, and increasingly painful, irritation at the back of my throat. The GP practice where I live has a high turnover of staff, uses a considerable number of locums, and I saw four different doctors during this period. Eventually, I was sent for a scan with stage 3 cancer of the throat diagnosed. The consequent course of treatment was intense, exhaustive, and saved my life. The specialists conceded that they only just got to me in time, and it had been touch and go.

My living experience is my ongoing mental health journey which I have lived with since I was a teenager (I’m now 62). I am a multi-suicide attempt survivor and have been in and out of therapy for a number of years; at one point in my life, I was sectioned and spent time in a Secure Mental Health Unit. It was following this incident that I was placed on a waiting list to see a Clinical Psychologist; I waited nearly two years for this to happen. The Psychologist manged two appointments before informing me that they were dropping their caseload and taking indefinite leave due to work-related stress. This had a devastating effect on me, and I withdrew from any meaningful contact with the outside world altogether. I became a recluse, rarely left the house, and this state of affairs went on for several years.

Both of these examples highlight clear themes regarding patient safety. The first is to do with the patient and the lack of information and support that a good healthcare system should provide; the second is a complete absence of a trauma-informed, person-centred approach with a focus on shared decision-making.

Both of these examples also highlight the safety issues around the people who are delivering the care. Healthcare Professionals are being asked to work in circumstances that are not conducive to maintaining high standards and are given caseloads that are unrealistic. There appears to be an emphasis on quantity rather than quality when it comes to treating people in the NHS. This is the antithesis of what good patient safety should look like.

Working together for a safer future

I have used my own lived and living experience to illustrate how systems put people’s safety at risk, and I have tried to identify the key indicators that are behind this. This is the essence of lived experience and how it should be used. It would be simple for me to just complain about bad service, poor management, lack of resources or insight. It is far more constructive to use the experience to inform the service providers, and to do so without resentment. It is important to remember that the people delivering services are as trapped in the system as the service users.

It is only by working together, identifying the problems, finding the solutions that we will move to a safer service.

Related content:  Patient safety and co-production, a blog by Anthony O'Connor

Share your insights

Do you have lived experience insights to share that could help improve patient safety? Are you a patient, or health or social care professional who has been involved in work that is guided by lived experience? Could you tell us more about the benefits of working this way and the impact it can have on care? Comment below (sign up first for free) or get in touch with the editorial team at content@pslhub.org.

I try to co-produce as often as circumstances will allow. Sometimes this is easy; the right people with the right mindset working on a project that lends itself easily to co-production principles. Often, it’s more difficult than that, and this is particularly true in the NHS. Politicians can legislate, and Senior Managers can mandate, but unless there is a basic understanding of what co-production entails, it will always struggle to be adopted. This is a shame as co-production is not difficult to do, is often the best solution to a problem, and is generally used again by people who have previously used it successfully.

The benefits of co-production

When it comes to patient safety, co-production is an obvious resource for learning, sharing and embedding good, safe practices in all kinds of settings. When we teach Quality Improvement, co-production is an essential ingredient in getting all voices heard; patients, carers, providers, funders – everyone who plays a key role in patient safety.

Co-production is about levelling hierarchies and getting people to engage with one another in a mutual and reciprocal arrangement. It’s about sharing risk and responsibility and looking out for each other. Good co-production will always contain elements of lived experience, a fundamental resource in finding problems, fixing issues, and growing best practice. More than this, co-production enables the individual voices of lived experience to come together, identify common cause, and develop identifiable themes for progress. This elevates lived experience to a higher level where it’s impact as a resource takes on greater significance.

There will always be hierarchical hindrances in systems, but it is possible to deliver co-produced outcomes in targeted and specific programmes. Setting parameters is not necessarily a bad thing, particularly if these are to do with resources; co-production has a long history of being a useful management tool when resources are scarce and have to be shared across multiple stakeholders. The important thing is to make sure all of the stakeholders are present and make an equal and equitable contribution to the conversation.

Using co-production in multidisciplinary teams (MDTs)

A good example of where co-production could be more widely utilised to enhance patient safety within the NHS is the multi-disciplinary team (MDT). Research on these teams has shown that they work best when there is no hierarchy, each member has an equal voice, everyone knows what their own role is, and what their colleagues’ roles are. These teams operate most effectively when there is mutual respect and trust – two core principles of co-production. This approach has the added advantage of increasing staff safety; team members tend to watch out for one another. If you add into this mix the ongoing engagement and inclusion of the patients voice you will start to see real progress around patient safety issues.

Patient Safety Partners

The ongoing roll-out of the Patient Safety Partner role is a further opportunity to embrace some basic co-production ideas. This role with its wide brief of engagement with both service users and service providers could become a pivot for those all-important mutual and reciprocal conversations that really must take place if we are to make meaningful progress with patient and staff safety.

I believe there is an opportunity here to develop a safe space, co-designed, co-facilitated, and co-produced with patients, carers and staff where we can begin to build a better, more open culture of safe practice. The beauty of this approach is that there are no top-down demands, no stream of complaints in the other direction, just a recognition that this is everyone’s business and it need everyone’s attention. With co-production, everyone owns a piece of the work and that makes a profound difference to the mindset of the people involved.

A culture shift has begun – be part of it

Recent legislation has called for more use of co-production and of lived experience at every level of decision-making but this will only begin to happen when these concepts are more widely understood and appreciated. Like every change in culture, this starts in small ways, but will eventually reach everywhere.

I would encourage anyone reading this to learn more, and to try things out. In my own experience, whenever I have worked on projects that use co-production the results are good and everyone involved wants to do more of it.

Related reading:  Patient safety and lived experience, a blog by Anthony O'Connor

Share your insights

Have you been involved in co-production work as a patient, carer, healthcare professional or social care professional? Do you have insights to share around co-production and patient safety? Comment below (sign up first for free) or get in touch with the editorial team at content@pslhub.org. 

Download a pdf of the poster from the attachment below.

AI is not a safe replacement

People often ask if I am worried that AI will take over my work, and my answer is always “no”. Professional translators are taught a range of techniques and theory, such as quality assurance, cultural sensitivity, terminology, context, consistency, client preferences, and more importantly, risk mitigation and legal compliance. They are trained in one or several subject areas, such as legal, financial, technical, literary, journalistic, and medical. Medicine, in particular, is a challenging area because of the legal implications and risks involved, so there is often a more specialised approach to training medical translators.

I worry there is a growing misperception that unqualified translators or AI can easily do the job. This is particularly pertinent in healthcare, where there are cases of translated text being presented to patients or clinicians without any form of secondary review. Low-quality translations can have catastrophic consequences, such as inappropriate patient care, incorrect diagnoses or, in extreme cases, death. Unregulated AI translations present a serious risk to patient safety.

Common translations tools

Technology and translation have worked hand in hand for many years. For decades, translators have used a range of computer-assisted translation (CAT) and localisation tools. This is particularly useful for organisations that use the same chunks of text across different publications as it ensures consistency in terminology and style.

It is also common practice for translators to use machine translation engines within their CAT tools, which they review and post-edit. With newer large-language models and neural machine translation, this has advanced even further, and prompt-based AI translation has seen results like never before. However, in my opinion, it is still not good enough for medical translation as it lacks the quality, consistency, style and cultural insight a medical translator can provide. It is also prone to “hallucinations” (where information is made up) and factual errors, which can lead to serious mistranslations.

How can we use AI safely to assist translation in healthcare?

AI should be used to assist translators not replace them. This could be by producing first drafts that are then edited and proofread. It can also support translators with admin-heavy duties, such as terminology and translation memory management and might be useful for informal communication (such as social media) or for getting the “gist” of something in another language. In other words, AI-translated text without human review should never be used for public consumption in healthcare.

At EIDO, we do work with AI where necessary. For example, in India AI has been used to produce a first draft translation of EIDO information in Hindi and Marathi while using our translation memory as the base text. This is then proofread and edited by human translators and sent for a final review by an accredited medical organisation before publishing. This layered review process ensures that any inaccuracies and mistranslations are picked up along the way, and by using a translation memory, translations are kept consistent with previously translated content. This ensures patients in India can be given information leaflets that are both understandable and precise as well as being culturally sensitive to their needs.

How to choose a translation partner

I am often asked how I choose my translation partners. I would suggest using an accredited agency or translator from the ATC, ITI or CIoL. The following factors should be considered when choosing a translator:

• qualifications: ensure your translators are experts in the medical field.
• quality assurance: they should have an adequate process in place (i.e. translation followed by editing, proofreading and review by subject matter experts, where applicable).
• compliance: they should be compliant with healthcare regulations and standards in the target culture and language.
• confidentiality policies: should be in place to protect any sensitive information.

In the case of charities or non-profit organisations with budgeting constraints, I would recommend partnering with non-profit organisations, such as Translators without Borders. Some organisations may still make use of AI, but it must be used wisely, especially in the medical context, and by using accredited translation agencies or organisations, you are assured that your medical translation has all the necessary qualities.

Final thoughts

The use of AI in translation is a controversial subject, particularly in healthcare. There are serious cultural, medical and legal implications arising from the accuracy of information provided to both healthcare professionals and patients. These risks, if unmitigated, could lead to serious patient harm. AI translation without human supervision and review is therefore a false economy. It should not be used in medical translation unless handled by a professionally trained medical translator. By investing in high-quality medical translation, you can rest assured that patients receive accurate, safe information which leads to the right care and treatment.

Opinions expressed in blogs and other content are those of the author. Patient Safety Learning welcomes sharing content and opinions that promotes safer patient care and for the reduction of avoidable harm.  The views expressed on the hub however do not necessarily represent Patient Safety Learning's views or values. References to a specific product or service does not imply a recommendation or endorsement.

Numbers not words

• Interpretation of words like ‘rare’ and ‘common’ varies enormously. Always use a statistic such as 1 in 100 people alongside words like rare or common.

Use natural frequencies rather than percentages, for example 10 in 100, rather than 10%.

• When giving people two frequencies to compare, make sure they are both expressed as ‘out of’ the same number. For example, 1 in 100 compared with 2 in 100, NOT 1 in 100 compared with 1 in 50.

Use absolute risk rather than relative risk

• The absolute risk of an event increases from 1 in 100 to 2 in 100, but the relative risk of the event doubles. Using relative risk in isolation can be misleading.

Illustrating risk

• A great way to improve users’ understanding of risk and statistics is to use visual aids.
• Using a mix of numerical and pictorial formats to communicate risk is helpful.
• Visual displays may be most helpful for giving people an overall pattern, whereas actual numbers can be better for communicating detail.

Perceptions of risk

• Consider using both positive and negative framing, i.e. ‘3 out of 100 people experienced this side effect, but 97 out of 100 did not’.
• Consider adding some context to your statistics. What would make a useful comparison to give people a sense of the likelihood, or to help them make their decision?

Explaining uncertainty

• Communicate the uncertainty of data or if evidence is of low quality.

Pre-empt misunderstandings

• If something is easily misunderstood, or there is a common myth, it is better to address it head-on.