By Dr Matt Cooper, NIHR Newcastle PSRC, Safer Integrated Health and Social Care Environments Theme Research Associate.

Over the past year of the Tilly Hale Carer Research Panel, we have met on several occasions both in person and online. The sessions have been hugely beneficial to both myself and our research team. The purpose of the group was to establish a collaborative space where carers could help priorities and set the agenda for the research we are doing within the school and patient safety group. Initially I found it difficult to work out how to ensure the group made an impact and how we could become sustainable beyond the funding. I worried that the group would not have a single direction, and I wanted to ensure I brought meaning and a purpose to the group. Looking back over the past year I think the group has made more impact that I initially would have realised. 

Since the group was established, I have had the absolute honour in being able to listen and learn from the experts in what caring should be about, the challenges they face, and where we need to be doing more to research to support the development of services. The carers in the group are passionate about providing the best support for the people they care for, while providing a selfless act of giving their time and energy, despite the challenges they face or the impact on their own health and wellbeing. 

The group has informed my thinking and critical review of research more that I had accredited before, and they have made me think more holsitically about the research we can do. Within our research team we now have 7 projects in this space including, student carers, carers involvement in medication management, carers involvement in hospital at home care, carer wellbeing, and support for ethnically marginalised carers. All these projects I believe have been informed by the panel and give thanks to them and their openness to support this. 

Of course, we are also working on an art piece which has been commissioned around what it means to be a carer, and below is an intial draft of this. This piece I hope can be sent far and wide to demonstrate the vitally important role carers play in the healthcare landscape and support the research we are doing. I thank the research panel for their honest reflection when developing this piece and I hope that it does justice to their experiences. 

NIHR Newcastle PSRC, Professor Annette Hand

On a dull and foggy Thursday afternoon I travelled down to the House of Lords in London to represent the Newcastle NIHR PSRC for the launch of the National State of Patient Safety Report (2024). This report, first published two years ago, is produced by the Institute of Global Health Innovation at Imperial College London and is commissioned by the charity Patient Safety Watch. The report assesses the state of patient safety within the NHS, using all available data, and provides a detailed picture of the national state of patient safety in England.

After making my way through security I was ushered up a grand and spiralling staircase to the beautiful River Room to mingle with academics, researchers, politicians and charity staff, all personally invited due to their connection to improving patient safety. The event was hosted by Professor Lord Ara Darzi, Co-Director of the Institute of Global Health Innovation, who informed us that unfortunately there had been a decline in 12 out of the 22 metrics that had been reassessed. Lord Darzi stated that “Our latest report on patient safety in England reveals alarming declines…The NHS is now falling behind leading nations in patient safety. We urgently need to address these issues to repair the health service and provide high quality care for all patients and their families.”

   

He provided some of the headlines of the report which are:

• In 2023, the number of deaths that could have been avoided if the UK matched the top 10% of OECD countries: 13,495 deaths
• In 2023, the UK ranked 21^st out of 38 OECD countries for patient safety
• The NHS spends £14.7 billion a year treating people who have been harmed by mistakes made during their care.
• Cost of harm for claims resulting from incidents in 2023/24: £5.1 billion
• In June 2024, the number of people waiting for elective care was 7.6 million
• 2 in 3 staff feel unable to carry out their jobs fully due to workforce shortages

Whilst these are all stark statistics Lord Darzi eloquently illustrated the personal impact of this report stating that we must never forget that behind every statistic outlined in this report, is a life.  A life cut short, or seriously impaired. A family in grief, or now consigned to be life-long carers.  He described the only way we can properly commemorate the people affected by patient safety failings is to learn and improve.

The report also highlights that the impacts of unsafe care are not spread evenly across England but are greater in the North than the South, something we are only too aware of. The report also details a complex picture of national patient safety with evidence that the health system cannot keep pace with the number of recommendations already made on it. What was reassuring was rather than adding further recommendations it was advised that a focused set of patient safety priorities must be agreed that we can all work towards, and something I expect we will hear more about this in 2025.

We also briefly heard form Jeremy Hunt, Chair of Patient Safety Watch and Baroness Merron, the Minister for Patient Safety, on their progress and commitment to the patient safety agenda. Finally, we hear from Merope Mills, a senior editor of the Guardian and patient safety campaigner, providing us with an emotional update on the progress of Martha’s Rule NHS England » NHS to roll out ‘Martha’s Rule’, and the fantastic impact this is already having to so many lives within the NHS.  

I had plenty to reflect on during my long journey home, and whilst the report does provide some very sobering statistics, I know that together we can change this trend and make a real difference to patient safety outcomes. 

Read the report: https://www.imperial.ac.uk/stories/National-State-Patient-Safety-2024 

Lauren Lawson and Radin Karimi, NIHR Newcastle PSRC Safet Integrated Health and Social Care Environments & Safer management of polypharmacy in multiple long-term conditions Theme, PhD students.

The NIHR Academy Member’s Conference, held in Leeds on the 19th and 20th of November 2024, brought together researchers at all career stages to network and learn more about work supported by the NIHR. This year’s theme, Research Impact: Beginning with the End, emphasised planning for meaningful communication of research findings to diverse audiences.

A highlight of the event was the skills workshop led by Dr Oli Williams and Dr. Joe Langley on creative methods for impact. Here, we saw examples of creative projects, including evidence-based role-play scenarios given to participants to reconstruct serious incident investigations, encouraging empathy and insight. Another innovative project used a 3D model of a leg to visualise the effects of ‘pyjama paralysis’ on muscle mass in hospitals, and uneven-soled shoes illustrated the impact on balance. These creative approaches showcased how researchers can engage audiences and make their findings resonate, inspiring new ways to share and develop research. 

NIHR Newcastle PSRC PhD students Faiza Yaha, Lauren Lawson and Radin Karimi

The second day of the NIHR Academy Member’s Conference kicked off with an exciting and creative networking session using LEGO® SERIOUS PLAY. Attendees worked in groups to answer impact-related questions by building LEGO models, sparking new ideas and fresh perspectives on research challenges. This interactive activity highlighted how stepping outside traditional methods can inspire innovative solutions and stronger collaboration.

A standout moment was the keynote speech by Dr. Raphael Olaiya, known for his role on CBBC’s Operation Ouch! and as a data scientist in the NHS. Dr. Olaiya shared how he combines his expertise in science with engaging communication to reach broad audiences, encouraging researchers to think about how they share their work in meaningful ways.

The conference left attendees motivated to explore creative approaches to making their research more inclusive and impactful. It was a strong reminder of the power of collaboration and innovation in driving research that makes a real-world difference.

By Prof Hamde Nazar, NIHR Newcastle PSRC

At the PSRC PhD SafetyNet event in March 2024, it became clear that were individual researchers and doctoral students investigating various safety aspects of a model of care known as virtual wards, currently gaining a lot of traction. Virtual wards, or hospital at home is not a new concept, but there has been increased drive to better manage patients in their home to avoid hospital admission and/or facilitate early discharge. Virtual wards allow patients of all ages to safely and conveniently receive acute care at their usual place of residence, including care homes.

After some corridor discussion, Prof Beth Fylan (Yorkshire and Humber PSRC) and Prof Hamde Nazar (Newcastle PSRC) decided to organise a collaborative Virtual Wards PSRC Safety Event.

In September, guest speakers, researchers, doctoral and pre-doctoral students across NIHR infrastructure were welcomed to the cross-PSRC Virtual Wards event in Newcastle University. The aim was to facilitate discussions to identify and develop research priorities and foster partnerships in this area of research.

The day was opened with an informative update by the virtual ward programme lead at NHS England, Charlotte Lynch. Charlotte provided an overview of the current evidence base and newly published Virtual Wards operational framework. It was recognised that there have been priority areas such as frailty, respiratory and heart failure and an increasing focus on children and young people. The national virtual wards team are keen to hear more evidence about what features of virtual wards are associated with positive outcomes and for which patients. There is interest to understand the longer-term impact on patients and establish how patient safety can be measured in this context.

Sophie McGlen then delivered interim findings on the barriers and enablers to implementation of virtual wards across the Midlands integrated care system. Sophie described the many factors across the system, organisation and practitioner levels that are important to consider around virtual ward implementation.

Maggie Westby provided an update on a realist review on virtual wards for patients with frailty. The key take home messages were around having more proactive care, keeping people safe and stable to prevent deterioration and potential crisis.

Representatives from four of the PSRCs (Newcastle, Yorkshire and Humber, Greater Manchester and North West London) showcased patient safety in virtual wards research projects.

Three round table discussions then focussed on:

• Research priorities for patient safety in virtual wards
• Potential methods and strategies to researching patient safety in virtual wards
• How to embed patient and public involvement and engagement and equality, diversity and inclusion into research 

Attendees agreed on some key areas that required further evidence. namely:

• Establishing shared definitions and standards for virtual wards​
• Investigating data availability, integration, sharing and governance​ for virtual wards
• Investigating patient safety in virtual wards ​ – understanding appropriate metrics and strategies
• Investigating safe and appropriate patient assessment for and monitoring within virtual wards
• Understanding the need for and nature of workforce training, preparedness and competence​

There was an appreciation that evaluations of virtual wards to date have been mainly single-site and observational in nature. There was a consensus that multi-site studies employing robust research designs, experimental where possible, are needed to improve the quality of the evidence base.

All attendees discussed the need for sustainable, well-resourced and diverse patient and public involvement to feed into all stages of the research process.

The final discussions of the day were to establish the next steps for this group given the shared interests and endeavours. There is an intention to set up a community of practice around patient safety in virtual wards where researchers can share, disseminate and signpost evidence and findings. The group are interested to explore the potential for collaboration for research and funding applications.

Researchers interested in joining the mailing list for the community of practice can contact Hamde Nazar from the Newcastle PSRC hamde.nazar@newcastle.ac.uk

Following on from this event, Prof Hamde Nazar has been invited to share the directions of research as identified by the PSRCs at a Virtual Wards sand pit event in October 2025 that is supported by the Advanced Care Research Centre based at the University of Edinburgh, the NIHR Applied Research Collaboration (ARC) North East and North Cumbria and Newcastle University.

I am not a medic, nor an academic. For over 34 years, I observed and lived with someone who was constantly taking medication as he had had a transplant, then for around 20 years his health gradually changed, more conditions developed, and the number and levels of medication were a daily matter of existence. For around seven years I became a regular attendee at hospital visits, meeting consultants and learning about changes to his health, the consequences of these and the potential for enabling a good quality of life to continue. So, gradually my interest in the respective roles of patient, carer and medical practitioner grew.

Oliva Grant, Patient and Public Involvement and Engegement Lay Co-Theme Lead

“At the heart of it all, I think, RESPECT is fundamental.”

The one thing I observed was the need for listening, of all of us. My husband was the person needing the medial support but in later years I needed to be part of discussions and to understand, so that I could support him.

At the heart of it all, I think, RESPECT is fundamental. Patients know themselves and their circumstances best, academic understanding may lie with medics but each needs to listen to and consult with one another. It is not a one-way street.

During those years I did not know there was such a thing as PPIE. Learning about that came several years after his death.

In the early months of 2020, when alone at home in lockdown I was slightly ‘at a loose end’ and was approached by a senior medic at Newcastle who had spotted and cut out several cancers from my husband. He told me about the potential for joining, as a lay person, a bid for funding into the potential role for Artificial Intelligence in aiding the diagnosis of medication for people with multiple conditions. I am fascinated by the potential for AI (for good and ill) and multiple medications had been part of my life for years. So, I said yes.

There was though one condition from me to be part of this research. That the role of PPIE must be at the heart of the dialogue, researchers are not just doing this fascinating research for themselves, it has purpose. At the heart research is FOR patients, therefore patients must be integral to, listened to and heard. For that to work the researchers must be enabled to speak directly with patients, so training and enabling researchers to get this skill and ability to listen is a fundamental part of the work of PPIE. It is about being respectfully and mutually informed.

So, I would urge researchers to take up every opportunity to listen, meet and ‘hear’ what is said by PPIE members. Use lateral thought as well as deep interrogation type thinking and try to hear effectively is being said. People you are meeting are those for whom this research is directed. Essentially listen and learn, this is true both for PPIE members and researchers.

Written by Ayesha Sahar, Research Associate, Artificial intelligence and data science in multiple long-term conditions theme.

In recent months, I have focused on developing models to predict patterns and uncover relationships in large datasets, particularly in healthcare. For example, understanding why certain health conditions often co-occur or how long-term medication prescriptions affect patients over time can be challenging. Data modeling provides a solution by analyzing historical data to identify and predict these connections. 

One method I have explored is topic modeling, which organizes complex datasets into groups or “topics.” In healthcare, this might mean identifying clusters of related conditions—such as diabetes and hypertension frequently occurring together—or grouping treatments and prescriptions commonly used for managing these conditions. This helps researchers and clinicians make informed decisions, whether tailoring treatment plans for individual patients or designing studies to explore new healthcare solutions. 

To enhance these insights, I have also employed Principal Component Analysis (PCA). PCA reduces the complexity of large datasets by identifying clusters of related variables (or components) that explain the most variance in the data. This approach simplifies the relationships between numerous conditions and prescriptions, making the data more manageable and meaningful. 

However, raw PCA results can be difficult to interpret. That’s where varimax rotation plays a critical role. This mathematical technique adjusts PCA components to make them more distinct and interpretable. Instead of overlapping clusters, varimax rotation sharpens the focus, clearly linking specific conditions to corresponding treatments. 

By combining these methods, my work simplifies the complexity of healthcare data, transforming it into actionable insights. These models not only reveal patterns but also support better clinical decisions, enabling healthcare providers to design effective, patient-centered care pathways. As we refine these approaches, the potential to improve both research and patient outcomes grows exponentially. 

Public and patient involvement and engagement (PPIE) is a very valuable part of research, and one I have found both enjoyable and incredibly useful for planning projects and ensuring my work reflects the views of those the research is about. For my PhD project on the financial impacts of childhood illness, I have recently completed PPIE work with two youth groups in the North East – the Young People’s Advisory Group (YPAG) North East and the Youth Forum in Gateshead.

For both groups I delivered a session exploring young people’s perspectives of the barriers to young people’s healthcare access during the cost-of-living crisis (COLC). The experience I gained from these sessions working with the public and having engaging discussions has been extremely valuable for developing my skills as a researcher as well as providing me with perspectives I had not encountered in my background research. 

“Incorporating PPIE into my PhD project was an invaluable experience for developing both my research itself “

These sessions revealed local and accessible healthcare, transport, dependence and family situations, negative perceptions and mistrust, and communication as six key barriers to young people accessing healthcare in the COLC.

I was able to present the findings from the PPIE sessions back to YPAG so they could confirm no important points were missed, and the work is ready to be taken forward to help inform my future research. The group were also shown a youth theatre performance of Fed Up! about child food poverty in the North East at this feedback session, allowing the young people to see both how their input will be used to inform future research as well as watch a dynamic theatre performance informed by those greatly impacted by the cost-of-living crisis in the UK.

Incorporating PPIE into my PhD project was an invaluable experience for developing both my research itself and my skills as a researcher for working with the public. It was also an experience I greatly enjoyed, and would recommend to all PhD students to build into their research.

Our first NIHR Nrewcastle PSRC Theme Implementation Management Group meeting, thankfully shortened to TIMG, for our theme on safer, integrated care environments was great! It was a meeting that could not have better met its terms of reference. Providing input and advice on the theme direction, priorities, and strategies to investigate them.

We had stakeholders from organisations and sectors who could understand the big-picture problem being addressed in the theme and were generous with their suggestions and signposting. It helped that they were all clearly champions in their fields of work and motivated towards improving practice around integrated care and patient safety.

As a theme lead, getting a steer on the key issues in relation to the topic areas we currently have active projects was invaluable. But the most significant discussion point was about something myself and researchers in our theme had not come across; ‘Shared care’. As soon as this was mentioned as an area of possible interest from our ICB representative, other TIMG members contributed their emotive perspective. This highlighted something that was clearly causing contention in practice on multiple fronts with implications on patient safety, with seemingly little being done to resolve and/or investigate and optimise.

This piqued our interest; something under the radar and causing this much drama was worth investigating. Our first delve into literature was unsuccessful in retrieving anything. Dr Google was more fruitful with a few guidance and policy documents to describe shared care as ‘an agreement to ensure seamless prescribing and monitoring of medicines which enables patients to receive care in an integrated manner’. 

This seemed like something we could be looking into. The available documents, however, made this initiative sound quite benign and actually like something that could work out really well for patients. So, why the drama?

The following weekend, I happened to be having a social encounter with a family member, who is also a practising GP. So, over coffee and cake I asked about shared care. I was not prepared for the head-in-the-hands response. The implementation and reality of this agreement in clinical practice sounds messy, complex and potentially riddled with risks to patient care through monitoring, identifying and addressing fluctuations in chronic conditions in patients who are often experiencing multiple long-term conditions and have complex health and social care needs. Also, shared care appears to be here to stay in the NHS…at least for a while.

So, what has this meant for us within our theme; we have started to look at this problem more systematically. Given the lack of published evidence on this initiative, stakeholder engagement will be crucial to understand it better in terms of its design, delivery and implementation, work out the risks and potential benefits and investigate how patient safety is protected and consolidated. It looks like our first TMIG has flagged a potential theme priority…watch this space!

The PSRC PhD SafetyNet Networking Event was held on the 4^th March 2024 in Leeds, bringing together students and supervisors from across the 6 PSRCs in England. It was a fabulous day with an opportunity to learn from one another and grow collaborations in a supportive, nourishing environment.

Before the event, I was excited to meet fellow PhD students and learn more about the work that other PSRCs are doing. However, like other new PhD students that I had spoken to, I didn’t really know what to expect or what I would gain from the event. Quite adventurously, after discussion with my supervisors, I decided to take the leap, and submit an abstract for a protocol that I had just written up for developing logic models on step-down virtual wards. Imposter syndrome kicks in, “I am only a few months into a PhD- what have I got to talk about?” On the other hand, I knew that delivering presentations and the thought of public speaking were my worst nightmare. That said, I also knew that I needed to fight my fears and start somewhere!

When the email came back saying my abstract was accepted – an inner shriek of excitement, surprise and panic kicked in! “Where do I start?” Amidst the feeling of anxiety and perceived inexperience, I procrastinated and delayed even thinking about the presentation. With some reassurance and moral encouragement from peers and supervisors, I knew that this was the ideal opportunity to share my plans for the PhD. The event was a supportive environment of like-minded people, many of whom were likely to be on, or had been through, the same journey making this a perfect forum for feedback, sharing knowledge and developing key skills. It was great knowing that many other students were presenting their work (or planned work) at the event via a poster or oral presentation.

Everyone is at a different stage of their journey, but it was great to see how people support each other and in research this should not be under-estimated. Personally, listening to more advanced PhD students gave me the inspiration to see the future and that ‘I can do this!’. Similarly, talking to newer PhD students gave me the confidence to see how far I had come in my experience to date and that in fact, I may have some bits of wisdom to share which may help others.

Great Opportunities

In my opinion, I found that the PhD SafetyNet event opened the door to shared learning practices, a community of peer support in patient safety research and great opportunities, such as: 

• Networking
• Learn Together Discussions

Prior to starting my PhD, I was jokingly dubbed by my fellow research interns as ‘the networking queen’, however I never truly thought about why networking was so important. Reflecting on my journey so far, I would not have started my PhD without networking and speaking to people who were happy to share their experiences. I have come to realise that often these little informal chats and introductions can lead to great connections, bringing wisdom and expertise further down the line. 

Whilst some experts suggest that networking is a start to building connections for your long-term career¹, it is vitally important to recognise that networking is a mutual ground for positive exchange of knowledge and support. Conferences and events such as these are vital in enabling trainees to develop and apply competency in key skills such as presentations, communication, dissemination of their work and equally networking.² We are fortunate within the NIHR PSRCs to have these networks of peer support and building communities of practice together in patient safety. The saying goes ‘it is a small world’ but on reflection, in the research world you can’t really work in isolation. It is often the work of great teams and collaborations that is needed to make an impact.

These discussion workshops were valuable and allowed people to connect and share experiences. I found the ones I attended useful, and I chose the sessions that were relevant to me. In particular, I was keen to attend the session on ‘Navigating the first 6 months of your PhD’ as it was unlikely that I would get this experience elsewhere, other than rich discussions with the people who have just experienced it or experiencing it currently. This was potentially the start of building great academic networks, peer support and collaborations in patient safety moving forward. I learnt helpful tips from the other students, namely technical tips and basic key skills that are essential. For example, some discussions revolved around how to organise your literature, how to make notes, and several types of software that may be useful. Other workshops explored various aspects of research such as the importance of Patient and Public Involvement and Engagement (PPIE), Equality, Diversity and Inclusion (EDI), co-design in research, writing effectively and Impact and Dissemination.

In summary, events like the PhD SafetyNet Event provide a fantastic opportunity for PhD students and their supervisors to share work, learn from each other or establish connections. I look forward to attending more of these events throughout my PhD and beyond.

Acknowledgements and thanks go to the Yorkshire and Humber PSRC for hosting the event this year.

References

• Pickman, A., & Chauveron, L. Networking: How to market yourself and your PhD. In J. B. Urban & M. R. Linver (Eds.), Building a career outside academia: A guide for doctoral students in the behavioral and social sciences. pp. 151–160. American Psychological Association; 2019. https://doi.org/10.1037/0000110-014
• Subramanian S. The importance of conferences and networking in PhD and postdoctoral training. Current Protocols Essential Laboratory Techniques. 2020 Dec;21(1):e44

14^th March 2024 was the Academic Career Development (ACD) Forum in London, for all the ACD leads and the theme for the day was ‘research culture’. Representing the Newcastle PSRC, we headed down. It was our first such day. We’d put our training community’s video forward for sharing as a message from our community. And we were ready to learn all things great and mighty – directly from the NIHR Academy!

The usual train cancellations aside, we arrived relatively organised and alert. We found ourselves positioned at different tables, which was good as we got to create new links. We heard about some of the newer Academy schemes, were given feedback from the Postdoctoral event and listened to presentations on how we can develop and nurture a diverse research culture. We shared our community’s video and received some great feedback, which we will relay to our fellows (they did all the hard work on this) (Newcastle PSRC Academic Career Development Community Video). We had some lunch, swopped notes with colleagues old and newand made plans on how we can all be more collaborative. And then it was time to head home.

Our main learning from the day didn’t really hit us until on the train home, when we had a good 3 hours to unpack what we had heard, and to reflect on what it all meant for our Newcastle PSRC, and our wider Newcastle Health Innovation Partners’ Academy. And the more we reflected, the more we realised the substantial change that is in the horizon.

The times are changing. The next 5-10 years will see the stepping down of a whole generation of “training people”. Those of us who have lived and breathed training, career development and capacity building for the past 15-20+ years. Those who coined the term training lead, who came up with the idea of NIHR Academy, and who set up how we do things now. Those of us who have helped lead  the implementation across regions.

At the same time, the hugely positive shift – from historical hierarchies to much more multidimensional points of differences and richness of perspectives – is now, fortunately, looking inevitable. Not the least made so by the healthy refusal of the next generations of leaders to bow to such hierarchies but, instead, actively challenge us all to enact a more open, broad culture – for everyone.

But what does all this mean? I think it means: the future for the future leaders is now. If we have done our job of the past 15 years well, then the future is bright.