Blog 4
Value of Being Involved in PPIE – Tynara Kindred-McArthur
Being involved in PPIE has had nothing but positive impacts for me. Through the Youth Forum and YPAG, I have been able to be involved with countless research projects, I have been part of teams helping researchers target their work to children and young people, as well as contributing with what may be more or less beneficial for their work. Although I have worked with multiple researchers and staff, I have always felt heard and listened to. It has been so important to me to hear that young people are getting a chance to influence things that are targeted towards them.
Whilst there have been different styles of presentations, the structure I prefer is a brief introduction that explains the project in terms I can understand. It’s important that I am able to understand how the research is intended to help people, in order to offer the best advice. I find that open-ended questions work best, as they allow the young people to be able to fully express their views, which can lead to new ideas or conversation topics that researchers hadn’t previously considered. It is also helpful to have the choice of giving input anonymously, as that has allowed me to give more insight that I wouldn’t feel comfortable sharing publicly.
My experience of PPIE has given me a greater understanding of research. It has allowed me to understand the different methods used to gather data, as well as showing me just how wide an array of areas, even just within the medical world, can be benefited by research and PPIE.
My involvement has helped me develop more problem-solving skills, as I am often faced with questions and topics I have never considered before, meaning that each time I need to think of different ways something could be done or improved upon. This is also transferable to other areas of life and will continue to benefit me as I go through the world, as I am now already used to thinking in different ways in order to help to the best of my abilities.
Value of PPIE in Research, Abigail Collins
Working with young people like Tynara in PPIE work is incredibly important. PPIE allows members of the public to help shape research and gives them the opportunity to have more insight into the research process. I have found that involving PPIE enriches research projects greatly, and the value PPIE can have, not only for the research itself, but also for public contributors, should not be underestimated.
Blog 3
Bringing carers together to share their insights.
Participating in the Tilly Hale Carer Research Panel has been a transformative experience. As a carer and a public contributor to this panel, the opportunity to participate has had profound personal impacts. It has provided me with a deeper understanding of my own caregiving journey and a sense of purpose in contributing to the betterment of care systems. The process of collaboration, sharing lived experiences, and shaping the direction of research has been both enlightening and empowering.
At its core, the Tilly Hale Carer Research Panel is about bringing carers together to share their insights. From a personal standpoint, participating in this research panel has given me a sense of community and validation. The panel comprises carers from diverse backgrounds, each with their own unique challenges and triumphs. The opportunity to come together and discuss shared experiences has been incredibly valuable. It is rare to find a space where carers are not just seen as passive recipients of services but are actively shaping how those services should evolve. The recognition that our lived experiences as carers are critical to informing research has not only validated my role but also provided me with a platform to amplify the needs of carers on a broader scale.
One of the impactful aspects of being part of this panel is the chance to influence the direction of research. The topics we discussed, such as caring during transitions from hospital to home or supporting those with mental health or cognitive impairments, resonated deeply with me and many of the other carers involved. During discussions, we were encouraged to share our personal stories, reflect on the gaps in care, and highlight areas where improvements are desperately needed.
The research panel has also provided me with a deeper understanding of the broader implications of caregiving. It has been inspiring to see how the collaboration has evolved and how research projects have been informed by the input of carers, and by the discussions and insights shared within the panel.
The group’s discussions on topics like the use of digital technology in caregiving and supporting carers themselves have contributed to the research and have also influenced the ways I approach caregiving in my personal life. For instance, the exploration of digital resources and virtual wards has opened my eyes to the potential of technology in improving care delivery, particularly during times of transition when support systems can be fragmented.
One of the most rewarding aspects of being involved in the Tilly Hale Carer Research Panel has been the way it has impacted my own caregiving journey. The research is not just theoretical or academic; it is highly personal. The issues we discuss are the same ones I faced daily—whether it is appropriate support for mental health or cognitive impairments, or dealing with the emotional and physical toll caregiving takes on one’s health. The panel has not only helped me gain new perspectives on these challenges but has also empowered me to advocate for better support and resources. It has been incredibly validating to know that my experiences are part of a larger conversation and that I am contributing to research that could lead to tangible improvements in the care systems we rely on.
The art piece commissioned by the panel, which reflects the experiences of carers, is a testament to the power of storytelling in research. It not only serves as a visual representation of our collective experiences but also highlights the essential role carers play in the healthcare system. This piece, and the research it represents, gives a voice to those who are often overlooked and serves as a reminder of the need for systemic change to better support carers and the people they care for.
In conclusion, participating in the Tilly Hale Carer Research Panel has been a transformative experience. It has allowed me to reflect on my caregiving journey, contribute to meaningful research, and become an advocate for change. The collaborative nature of the group, the focus on lived experiences, and the opportunity to make a tangible impact on future research outcomes have all been invaluable. It has reinforced the importance of involving carers in the research process and has deepened my commitment to improving the lives of those who give so much of themselves in the service of others.
Public Contributor: David Black
Blog 1
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
Blog 3
Bringing carers together to share their insights.
Participating in the Tilly Hale Carer Research Panel has been a transformative experience. As a carer and a public contributor to this panel, the opportunity to participate has had profound personal impacts. It has provided me with a deeper understanding of my own caregiving journey and a sense of purpose in contributing to the betterment of care systems. The process of collaboration, sharing lived experiences, and shaping the direction of research has been both enlightening and empowering.
At its core, the Tilly Hale Carer Research Panel is about bringing carers together to share their insights. From a personal standpoint, participating in this research panel has given me a sense of community and validation. The panel comprises carers from diverse backgrounds, each with their own unique challenges and triumphs. The opportunity to come together and discuss shared experiences has been incredibly valuable. It is rare to find a space where carers are not just seen as passive recipients of services but are actively shaping how those services should evolve. The recognition that our lived experiences as carers are critical to informing research has not only validated my role but also provided me with a platform to amplify the needs of carers on a broader scale.
One of the impactful aspects of being part of this panel is the chance to influence the direction of research. The topics we discussed, such as caring during transitions from hospital to home or supporting those with mental health or cognitive impairments, resonated deeply with me and many of the other carers involved. During discussions, we were encouraged to share our personal stories, reflect on the gaps in care, and highlight areas where improvements are desperately needed.
The research panel has also provided me with a deeper understanding of the broader implications of caregiving. It has been inspiring to see how the collaboration has evolved and how research projects have been informed by the input of carers, and by the discussions and insights shared within the panel.
The group’s discussions on topics like the use of digital technology in caregiving and supporting carers themselves have contributed to the research and have also influenced the ways I approach caregiving in my personal life. For instance, the exploration of digital resources and virtual wards has opened my eyes to the potential of technology in improving care delivery, particularly during times of transition when support systems can be fragmented.
One of the most rewarding aspects of being involved in the Tilly Hale Carer Research Panel has been the way it has impacted my own caregiving journey. The research is not just theoretical or academic; it is highly personal. The issues we discuss are the same ones I faced daily—whether it is appropriate support for mental health or cognitive impairments, or dealing with the emotional and physical toll caregiving takes on one’s health. The panel has not only helped me gain new perspectives on these challenges but has also empowered me to advocate for better support and resources. It has been incredibly validating to know that my experiences are part of a larger conversation and that I am contributing to research that could lead to tangible improvements in the care systems we rely on.
The art piece commissioned by the panel, which reflects the experiences of carers, is a testament to the power of storytelling in research. It not only serves as a visual representation of our collective experiences but also highlights the essential role carers play in the healthcare system. This piece, and the research it represents, gives a voice to those who are often overlooked and serves as a reminder of the need for systemic change to better support carers and the people they care for.
In conclusion, participating in the Tilly Hale Carer Research Panel has been a transformative experience. It has allowed me to reflect on my caregiving journey, contribute to meaningful research, and become an advocate for change. The collaborative nature of the group, the focus on lived experiences, and the opportunity to make a tangible impact on future research outcomes have all been invaluable. It has reinforced the importance of involving carers in the research process and has deepened my commitment to improving the lives of those who give so much of themselves in the service of others.
Public Contributor: David Black
Researchers have developed AI, called DeepMerkel, which can determine the course and severity of aggressive skin cancers enabling medics to personalise treatment.
To read more please check out the Newcastle University Press Office post about it.
To read the related papers
Alongside Dr Anna Robinson-Barella, Dr David Sinclair, Dr Vanessa Davey, Prof Barbara Hanratty, and Prof Adam Todd in the journal of Age and Ageing.
Understanding polypharmacy for people receiving home care services: a scoping review of the evidence
This review comprehensively maps the evidence on the prevalence and management of polypharmacy in home care settings and highlights promising strategies for enhancing medication quality. However, significant gaps remain in understanding of how care staff and recipients experience and manage complex medication regimens, underscoring the need for further research in this area.
NIHR Newcastle Patient Safety Research Collaborative: Improving Patient Safety with Data
In the evolving landscape of modern healthcare, increased life expectancies, intricate dynamics of multimorbidity and disparities in healthcare access and outcomes, healthcare professionals face the challenge in optimising treatment whilst minimising risks to patient safety. The Newcastle Patient Safety Research Collaborative (PSRC) sets out to work across national networks aiming to improve patient safety by focusing research on service delivery, transitions between care settings, clinical decision making and patient safety behaviour, with a key emphasis on reducing safety inequalities in health care. The PSRC network will serve as a platform for national connectivity between key stakeholders such as NHS England, NIHR Infrastructures, Charities, Industry, and other partners.
Impact of accessing data
Data are a key driver in providing researchers a platform to conduct ground-breaking research, and in turn supporting healthcare professionals in improving the delivery of patient care and safety. The NHS have set out a recent strategy aiming to use data more effectively, to improve patient care and save lives. With this escalating drive on using patient data for ground-breaking research, it is paramount that it is dealt with in a safe and ethical manner. Therefore, the Department of Health and Social Care have been working with NHS England in investing in a data sharing system to allow for NHS data to be accessed on a shared platform, leading to the development of the Secure Data Environment (SDE). The SDE plays a fundamental role in dealing with NHS data in a sensitive manner but still allowing for it to play a pivotal part in research.
Why is this valuable to members of the public?
Having access to NHS data will enable us to address many issues that can affect both the general population and smaller populations groups in insistences of rare conditions. NHS data are reflective of the current population, offering great diversity and relevancy. These data can be used by researchers to better help understand diseases and identify lifesaving treatment. It also allows for current NHS services to be audited and analysed for quality improvement.
Working in partnership
Steve Lucas – Senior Delivery Manager
Recently, the North East and North Cumbria (NENC) Secure Data Environment (SDE) Project Support Service (PSS) has teamed up with the PSRC to improve patient safety research efforts. This collaboration is not just about data access—it is about shared goals. Through monthly meetings between the NENC SDE PSS and the PSRC’s research teams we can collectively discuss research objectives and pinpoint data needs, ensuring a tailored approach to supporting the PSRC’s objectives. This partnership is not just confined to regional boundaries. With the Newcastle PSRC acting as a national nexus, connections are forged with key stakeholders across the healthcare spectrum. This broader network enriches the collaboration, fostering knowledge exchange and amplifying the impact of research efforts. In essence, the synergy between the NENC SDE PSS and the Newcastle PSRC has allowed for us to pool resources and expertise, to advance patient safety research, paving the way for a brighter, safer healthcare future for all.
Significant steps
As a PSRC, we have collaborated closely with NENC SDE PSS in developing the SDE and to secure access to critical data that will enable us to address significant questions directly related to patient safety. This opportunity has been an exciting opportunity and with a diverse range of skills and clinical backgrounds, as a team, we recognise data can play a pivotal role in our research, especially in understanding how pressing issues are affecting people within the region.
Next steps
Currently, this platform is in the initial phase of being set up. Numerous meetings have taken place, involving the research team, NENC SDE PSS and other key partners, to understand how data will be utilised and to ensure the upmost confidentiality of sensitive information. We are now in the final stages of securing approval for access to key datasets.
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.
