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Raising awareness of the unpaid, unselfish work unpaid family carers do.

I wondered if this group was genuinely interested in involving carers in its research. I knew Tilly Hale from Liver North, a brilliant organisation where we had talks with leading consultants and I felt valued and learned a lot.

 

The Tilly Hale Carer research group inspires me in my own research to raise awareness of the unpaid, unselfish work unpaid family carers do. The involvement of NIHR as funders adds strength for me that the group is genuine. The group helps me to meet others like me, albeit with different reasons for caring. I feel a little less isolated and my voice is heard with this group. In hospitals, carers need a stronger sense of inclusion in decision making and being involved in the triangulation of care as they have knowledge of the patient (and possibly power of attorney).

I was a senior nurse in the NHS in Scotland and left to support a loved one. He was a brilliant academic but also an alcoholic. I have had a roller coaster journey navigating basic care at the point of need and all the horrors of alcoholism in the family. I genuinely thought he would die of injury through intoxication, or refusal of treatment from all services. I feel the patient is often consulted without the family or carer present, so the patient is often not giving informed consent.

Following my work and being part of the Tilly Hale Carer Research Panel, I am preparing a poster for a Glasgow dementia conference in May to raise awareness of the vital work carers do.

 

Public Contributor: Anonymous

 

 

Natalia Ochodzka, MSci Biomedical Sciences Graduate

Natalia held a summer internship between May and June of 2024 with Dr Matt Cooper. Natalia worked on a systematic review looking to identify digital toolkits used in the self-management of long-term conditions within the home and reflects on her internship here:  

Hi! I am Natalia, a recent graduate of MSci Biomedical Sciences with a Professional Placement Year programme at Newcastle University. I was also a research assistant at the School of Pharmacy for six weeks in May and June this year. My project was a scoping review focused on home-based interventions that support mental and physical health self-management in patients with multiple long-term conditions. I was based at the Newcastle Patient Safety Research Collaboration office and spent 60 hours surrounded by a wide range of researchers – from undergraduate interns, through research assistants and doctoral candidates to associates.

The nature of a literature review is very methodological; you need to follow certain steps to diligently get through thousands of publications to narrow your search to the most relevant reports, which then combined will (hopefully) suggest an answer to your research question, or at least provide you with the most relevant information on the search topic. Although it seems like an individual job, the part of the internship I enjoyed the most was interacting with my team! Daily discussions on topics related (and not so much) to our research questions made me realise that there is no one right way to do things right and that I should never limit myself to thinking in the regular, three-dimensional way. I learned distinctive styles of working, studying, and teaching, and all of it combined made me a better researcher. I saw the value and consequences of diligent work ethics, networking, and collaborating with people from outside of your study/ work circle. I am certain that this experience alongside the support received at PSRC will empower my future in clinical research, focused on physical activity and experimental medicine.

Eleanor Allen MSc Forensic Psychology Graduate

Eleanor held a summer internship between May and June of 2024 with Dr Matt Cooper. Eleanor worked on a project evaluating a hospital to home discharge service with a local charity. Eleanor reflects on her internship:

My research internship spanned six weeks and primarily involved the design and delivery of a service evaluation. This project was commissioned by a local charity and focused on hospital-to-home transitions in care. Coming from a forensic psychology background, the project area was relatively unfamiliar to me. Nevertheless, the skills required were transferable, allowing me to utilise my previous experiences as a volunteer researcher, in court, and from my research methods training. While I had some prior experience with qualitative data collection, this was the most immersed and involved I had been with a project. I was responsible for coordinating participants, data management and conducting one-to-one qualitative interviews with the charity staff members. Throughout the data collection process, we reflexively updated the interview schedule, meaning that every interview influenced future iterations of the questions. This led to effective and meaningful data collection and allowed me to incorporate my insights from the interviews. I presented my initial reflections and findings at the School of Pharmacy conference. The event gave me the opportunity to discuss the project with others from a broad range of academic disciplines, and gain insight into the research community at the school. I was particularly interested in the language used by charity staff members, especially relating this to self-identification as a barrier for carers seeking help. Often, staff held dual roles as carers and employees, and their language reflected how normalised their caring roles were. The conference was an excellent opportunity to meet other researchers and learn about ongoing projects within the school.

Overall, this internship was extremely valuable. Conducting research in an applied context was highly rewarding, and despite my background in forensics, I was able to apply my existing skills to the role. My experience and insights were valued by the research team, and I felt able to contribute meaningfully to the project. I also developed novel skills, such as communicating with a wide range of people, including participants, external partners, and academics. My qualitative interviewing and data management skills were also strengthened through the project. I am happy to say that I have now started as an assistant psychologist in an NHS Trust conducting research! I spoke about my experience with qualitative interviewing and recruitment in my application. Above anything else they seemed to like how I spoke about rapport building and connecting with people. I’m super grateful for the experience because it really built my confidence with that. Thank you Matt!

Arisha Ahmed MSc Pharmacy Graduate

Arisha held a summer internship between June and August 2024, supervised by Dr Matt Cooper. Arisha worked on a systematic review looking to identify digital toolkits used in the self-management of long-term conditions within the home and reflects on her internship here:

This summer I undertook a research internship with the School of Pharmacy at Newcastle University with Dr. Matthew Cooper as my supervisor. This project has allowed me to develop skills valuable in both research and my own professional development. My role within the team included, developing a systematic search strategy, navigating research databases (e.g. Medline, Embase, PsychINFO and CINAHL), study selection, evaluation of research quality in addition to completing a data extraction. Whilst the project was rewarding, we faced a few setbacks that taught us important lessons about the research process. For example, the screening process and data extraction took longer than initially anticipated which impacted the long-term plan of the project. These challenges taught us the importance of setting realistic deadlines and maintaining flexibility within project planning. The setbacks allowed me to truly understand the complexity of the research process as well as the importance of delegating tasks to each team member effectively to ensure a robust and timely piece of research was produced.

The findings from this research will continue to contribute to ongoing research activities within the School of Pharmacy at Newcastle University. Outcomes from this project aim to advise healthcare providers with invaluable knowledge as well as inform advancements in digital medicine. The project team are particularly interested in how to inform and guide Artificial intelligence (AI) systems to create AI driven health solutions. These innovations have the potential to significantly improve patient care and enhance clinical decision-making in the future.

As a healthcare professional, this internship has allowed me to critically analyse studies, assessing their rigor, relevance and impact to provide evidence-based care to my patients. It has also enhanced my appreciation for the vast array of research available to us in medicine. I am excited to further explore how medical policy, and advancements can be shaped by research, and I hope to pursue a career in research alongside my role in the NHS, focusing on integrating innovative digital solutions to patient care.

Co-theme Lead Professor Adam Todd of “Safer management of polypharmacy in multiple long-term conditions” and Professor Clare Bambra of “Safer Management of Multiple Long-Term Conditions in Disadvantaged Communities” co-authored a recent article in the BMJ Open “Ecological study of the association between the English national vaccination programme and area deprivation inequalities in COVID-19 mortality“

The paper concludes that inequalties in COVID-19 mortality rates could be significantly reduced by the National COVID-19 vaccination strategies. However barries to vaccination uptake in the most deprived areas need to be overcome if more is to be acheived.

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. 

Kayleigh Davison Lead Advanced Pharmacist Practioner and NIHR In-Practice Fellow, Newcastle University,

Supervised by Professor Andy Husband (Director of NIHR Newcastle PSRC) and Dr Anna Robinson-Barella (EDI Theme Lead for NIHR Newcastle PSRC).

Hi I am Kayleigh Davison, Lead Advanced Pharmacist Practitioner and NIHR In-Practice Fellow, Newcastle University.  I’ve recently become the only pharmacist to be awarded a National Institute for Health and Care Research (NIHR) In-Practice Fellowship, which I’ll be balancing alongside my clinical work in General Practice.  The NIHR In-Practice Fellowship is an incredible opportunity that will allow me to develop as a researcher without stepping away from my clinical work. I started working in general practice as part of the NHS pilot for Clinical pharmacists in general practice and now work as an Advanced Pharmacist Practitioner. I have always worked and wanted to work within primary care providing the first point of contact in the healthcare system for our patients providing holistic care. I have been very fortunate to develop clinically within primary care over the years under the supervision and mentorship of excellent GPs. Through this time I have developed a special interest in polypharmacy (when patients are prescribed multiple medications) and in particular over 15 regular medications. 

My research focuses on polypharmacy (when patients are prescribed multiple medications) and health literacy. Health literacy is basically how well someone can understand and use health information to make decisions. Shockingly, 61% of adults struggle with understanding basic health information. For those on many medications, this can make managing their treatments much harder. But the connection between polypharmacy and health literacy hasn’t been thoroughly explored in the literature yet. My aim is to shed some light on this issue and find ways to better support patients who may find complex medication regimens challenging.

My advice for others that may want to consider a clinical academic career is to start talking to your colleagues in academic institutes about your ideas or opportunities that may be available. There is also a lot of support available via National Institute for Health and Care Research (NIHR) and within our region we are fortunate to have NHIP academy who supported me alongside the academics within the Newcastle Pharmacy school throughout my application process explaining the different fellowship options to giving me feedback on drafts, the academy was there every step of the way.

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.

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. 

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