NIHR PSRC
PPIE-Impact-Case-Study-Domna-Salonen
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What can we learn from someone who has spent more than thirty years navigating complex health challenges? As This Curious Life begins its Global Conversation on Multiple Health Conditions, Victoria Bartle’s story offers a powerful reminder that some of the most important expertise in healthcare does not always come from textbooks, research papers or data. Sometimes it comes from the people living the reality every day. 

At the NIHR Newcastle PSRC, we are dedicated to improving safety and care for people living with multiple long-term conditions. While our research relies on rigorous scientific frameworks, Victoria’s insights highlight exactly why data alone isn’t enough. True progress happens when we combine clinical data with the deep, practical wisdom of patients who manage these complexities every single day.

Victoria’s journey shines a light on the questions that spreadsheets simply cannot answer—and reminds us who we are ultimately innovating for.

We invite you to dive into this insightful piece, explore the realities of navigating long-term conditions, and join the global conversation:

The Question Data Couldn’t Answer – This Curious Life

Victoria Bartle

Wednesday 16th September 09:30-16:30, Urban Sciences Building, Newcastle Helix, NE4 5TG

 

How do we make healthcare safer, fairer, and more connected for everyone?

 

Join the NIHR Newcastle Patient Safety Research Collaboration (PSRC) for an inspiring day dedicated to showcasing the groundbreaking research and projects we have driven forward over the last four years.

 

This showcase is a unique opportunity to explore how our research is directly improving patient safety, hear first hand how Patient and Public Involvement and Engagement (PPIE) is at the heart of everything we do, and connect with the minds behind the science.

 

Why Attend?

  • Join Rachel Carter, Director of Quality & Safety and Patient Safety Specialist at Newcastle upon Tyne Hospitals NHS Trust, as she discusses the key patient safety challenges facing large NHS trusts in 2026. Rachel will explore the Trust’s strategic priorities, the drivers shaping its safety agenda, and her perspective on the future direction of patient safety across the organisation.
  • Explore Our 4 Core Themes: Dive deep into the four pillars of our research:

Polypharmacy: Safer management of polypharmacy in multiple long-term conditions

Disadvantaged Communities: Safer management of multiple long term conditions in disadvantaged communities

Data and AI: Artificial intelligence and data science in multiple long-term conditions

Integrated Health and Social Care: Safer integrated health and social care environments

  • Engage in the Conversation: Each theme will feature a series of rapid-fire project presentations followed by a live, interactive panel discussion. We want to hear your voice—bring your questions and join the debate!
  • See PPIE in Action: Discover how patients and the public have actively co-designed and shaped our research to ensure it addresses real-world needs.
  • Network & Connect: Visit our interactive theme stands during breaks. It’s the perfect space to chat informally with researchers, view project posters, and build valuable collaborations.

Who Is This Event For?

 

This event is free and open to everyone interested in the future of healthcare safety, including:

  • Healthcare and social care professionals
  • Researchers, academics, and students
  • Patients, public contributors, and community advocates
  • Policy makers and industry partners

Spaces are limited, so reserve your free ticket today and help us shape the future of patient safety!

 

Register Now on Eventbrite at the button below

 

For any inquiries regarding accessibility or dietary requirements, please contact PSRC@newcastle.ac.uk

Click below to register

Register here

Pippa Wood NIHR Newcastle PSRC Operations Manager

I went to the NIHR SafetyNet Organisational Culture working group meeting in Birmingham on a cold day in January. I wanted to learn what “organisational culture” means and how it links to patient safety.

 

So, what is organisational culture?
After listening to researchers from different PSRCs, I learned that organisational culture is basically how people at work get along. It includes the relationships between colleagues, managers, departments, services and different job roles.

 

How does this affect patient safety?
The way people treat each other at work can directly affect the care patients receive. If communication and relationships between teams are poor, things can go wrong.
For example:

  1. A patient might be sent home from hospital, but no one tells their family or carers, so no one is there to meet them.
  2. A family may still be waiting for a call to say they can collect their loved one, only to find out the patient has already been taken home by hospital transport.

But when communication and teamwork are good, patients get much better care.
For example:

  1. Maternity staff might tell new mothers about breastfeeding support available in their community.
  2. If an older person is having surgery, hospital staff may work with community care teams and family members to plan what help the patient will need at home.

The biggest thing I learned

If staff are unhappy, feel unappreciated, experience bullied, or feel insecure in their jobs, this can lead to poor communication and bad relationships at work. This can then cause poor-quality services, lower standards of care, and higher risks to patient safety.

 

But if staff feel happy, valued, and supported, they are more likely to work well together. Good relationships between teams mean better services, higher standards of care, and safer experiences for patients.

Tracey Herlihey Deputy Director of Patient Safey (Digital) NHS England showing the alinghment with 10 year health plan
Tracey Herlihey Deputy Director of Patient Safey (Digital) NHS England showing the alinghment with 10 year health plan

Dr Matthew Cooper, NIHR Newcastle PSRC Safer Integrated Health and Social Care Environments, Research Associate

Dr Matthew Cooper, NIHR Newcastle PSRC Safer Integrated Health and Social Care Environments, Research Associate

 

Broadening My Understanding of Organisational Culture

 

Attending the organisational culture working group helped me to broaden my understanding of what organisational culture truly represents. Initially, I viewed workplace culture mainly in terms of supporting staff wellbeing and keeping people happy and healthy at work. Through the discussions, I realised how strongly organisational culture also influences patient safety and the consistent delivery of high-quality care.

 

  

Exploring the Ambition of the 10‑Year Plan

 

The working group explored the ambition of the 10-year plan, which is expected to drive change both during the next 10 years and for the future beyond. This however highlights some key risks:

  • That pressure to deliver quickly could lead to rushed decisions,
  • Missed input from some disciplines (implementation science for example), or
  • Action being taken without full consideration of the plausible impacts (for example removing resources from one service to fund a new idea).

A strong emphasis was placed on transparency of quality of care, including empowering patients through greater voice, choice and access to information. This was balanced alongside clearer accountability and stronger incentives for high-quality care. I was particularly struck by the challenge of double running costs, where services must continue to operate while resources are reallocated, and the importance of deliberately creating time for safety within this context.

 

Reaffirming the Core Purpose of Organisational Culture

 

Overall, the working group reinforced that the core goal of organisational culture is to support patients, underpinned by robust checks and balances, compassionate leadership, and a shared commitment to quality and safety at every level of the system. As a team at the NIHR Newcastle PSRC, this is something we are all hoping to reflect on and take forward in our research.

 

Learn more about the NIHR 10 year plan.

EDI Event Flyer. NIHR Newcastle PSRC Logo, Newcastle University Logo. School of Pharmacy at Newcastle University Presents ....... EDI Event Reasonable Adjustments and Inclusive Consultations of Patients. Image of Steve Storey he/him Lead Clinical Pharmacist at Cumbria, Northumberland, Tyne and Wear NHS Trust. Calendare Symbol: Wed 29th OCtober 2025, Clock Sympbol Welcome 12 noon Close 1pm. Navigation symbol. DENT RBG Lecture Theatre Medical School, Newcastle University. Register your interest by emailing: Anna Robinson-Barella, Director of EDI: anna.rebison-barella@newcastle.ac.uk or Matthew Cooper, Deputy Director of EDI: matthew.cooper2@newcastle.ac.uk @NCL_pharmacy @FMSdiversityNCL
EDI Event Flyer, . EDI Event Reasonable Adjustments and Inclusive Consultations of Patients. with Steve Storey, Lead Clinical Pharmacist at Cumbria, Northumberland, Tyne and Wear NHS Trust.

By PhD Student Jess McCann

For our October EDI event we welcomed Steve Storey, lead clinical pharmacist at Cumbria, Northumberland, Tyne & Wear (CNTW) NHS Trust, to come and speak to us about how we can make ‘Reasonable Adjustments to create Inclusive Consultations for Patients’.

Reasonable adjustments are described as small, sensible changes made so that people who face barriers to accessing and receiving care, due to a disability, mental health condition or other additional needs, are given equal opportunities.

 

He explained that we accept reasonable adjustments (like physical ramps, interpreters and assistive technology) in many areas of day-to-day life, so why should healthcare consultations be any different? Within healthcare settings, failing to make such adjustments could worsen existing inequities. For instance, people with un‐met communication, sensory or cognitive needs may experience worse outcomes, including higher mortality, simply because the system assumed a “one size fits all” approach.

In Steve’s session, he spoke of examples of what counts as “reasonable” vs. “unreasonable” adjustments. Sometimes, it isn’t about removing all risk or achieving perfect equality in consultation duration and structure, but about taking practicable, proportionate and effective steps to address disadvantages for that person, at that time. He then moved into an interactive exercise with the audience to experience some of the disadvantages people may face. He asked us to solve a complex mental‐math calculation within 30 seconds; then to try reading some text in a different language; then to try reading very small, blurry text. These simple activities illustrated how patients with cognitive impairment, language barriers, sensory loss or low health literacy are at a disadvantage when seeking, accessing or receiving health care. It was eye-opening to experience the frustration, the delay and confusion that patients are subject to.

Steve discussed several barriers for patients accessing care, such as language and language style, communication that isn’t just about language (e.g., neurodiversity, sensory needs, memory, processing speed), physical disability, diagnostic overshadowing and hypersensitivity (e.g., to sensory stimuli, environments, noise, smells). These may mean that reasonable adjustments to consultations are used; for example, longer appointment times, quieter environments, visual prompts, alternative formats, consultation breaks or bringing a support person to accompany.

Steve shared with us some very impactful real-life examples of people he has provided care for who have required reasonable adjustments, and demonstrated what it means to go the extra mile in delivering person-centred care.

 

 

 

 

 

 

 

 

Steve Storey presenting his work

He summarised that reasonable adjustments are not something necessarily taught within university or professional training but are central within professional capability. Being aware of additional needs, asking patients what they would prefer and anticipating barriers and how to act on them allows us to demonstrate humility and advocate for the best possible outcomes for our patients.

It was a very stimulating and thought-provoking session, and it was great to see a big audience of attendees, spanning undergraduate Pharmacy students, postgraduate students, members of the NIHR Newcastle PSRC, wider University network and clinical colleagues from Newcastle upon Tyne Hospital NHS Foundation Trust.  The talk provided valuable insights that we can apply not only in our current roles but also take with us throughout our future careers. Engaging with reasonable adjustments in consultation settings may allow us to be better equipped to promote person-centred care to diverse, underrepresented patient groups.

 

Thank you, Steve!

Dr Anna Robinson-Barella and Steve Storey

By Kamil, NIHR Newcastle PSRC Patient, Public Contributor

Lured by the promise of good food and new acquaintances, on Friday 17 October I made my way to Manchester for the NIHR SafetyNet Symposium – a gathering of clinicians, researchers and public contributors united by a single mission: tackling inequities in patient safety. Hosted by the Greater Manchester Patient Safety Research Collaboration (PSRC), the event brought together colleagues from the six PSRCs across England – Central London, Greater Manchester, Midlands, Newcastle, North West London and Yorkshire & Humber.

 

The day began with coffee and a bustling lobby filled with poster presentations. From the start, it was clear this wasn’t just an academic exercise. It was a collective effort to bridge the gap between policy, practice and lived experience.

 

One of the first things that struck me was the keynote by Dr Rosie Benneyworth from the Health Services Safety Investigations Body (HSSIB). I hadn’t heard of HSSIB before and I found its mission fascinating. The organisation investigates systemic issues in healthcare topics such as sepsis, prison health and fatigue without focusing on blame. Instead, it looks for learning and improvement. This shift from a ‘who’s to blame’ culture to one of collective accountability resonated deeply with me.

 

A presentation on avoidable healthcare-associated harm in prisons was another eye-opener. While I wasn’t surprised to hear that prisoners and people experiencing homelessness suffer significantly worse health outcomes, it was sobering to see how these inequities manifest in daily practice e.g. medication shortages, missed appointments and institutional barriers that make basic care difficult. As someone finishing reading a book on health promotion, I could connect the dots between theory and reality: these are not abstract inequalities, they are lived injustices.

Kamil Sterniczuk and Judy Baariu at the NIHR SafetyNet Symposium Manchester 2025
Kamil Sterniczuk and Judy Baariu at the NIHR SafetyNet Symposium Manchester 2025

One reflection that stayed with me came from a discussion about adoption and breaking cycles of poverty and violence. Even in systems that often feel broken, there are ways to create safety and opportunity through compassion and action.

Kamil Sterniczuk and Pippa Wood at the NIHR SafetyNet Symposium, Manchester 2025
Kamil Sterniczuk and Pippa Wood at the NIHR SafetyNet Symposium, Manchester 2025

Several sessions focused on the intersection of communication and safety, including translation and interpreting services. This hit particularly close to home. As a qualified Polish interpreter, I know how vital accurate translation is for patient safety, yet the pay rates offered by NHS providers are often so low that professionals can’t afford to take the work. Hearing that language access was being discussed as a safety issue, not just a convenience, was both encouraging and frustrating. We have the knowledge; now the system needs the will to act.

 

The Patient Safety Healthcare Inequalities Reduction Framework, presented by Dr Hester Wain, outlined five principles for change: communication and information, training and resources, data, co-production, and research. I was especially struck by her emphasis that the experiences informing the framework are what make it powerful.

 

By the end of the day, after many conversations in the poster corridor and a moving talk on ethnic inequities in patient safety by Professor Dawn Edge, I left Manchester feeling both hopeful and challenged. The message was clear: health doesn’t happen in a vacuum. Tackling inequity requires empathy, collaboration, and, above all, a commitment to listen to those whose voices are too often ignored. For me, as a patient-cum-public contributor, the symposium was a reminder that my lived experience isn’t just welcome in research – it’s essential.

 

 

 

 

 

By Henry Song, Artificial intelligence and data science in multiple long-term conditions theme PhD student

Attending the NIHR Newcastle PSRC/Pharmacy event on the 19th of June was a very positive experience for me. Although I was not able to present my latest research findings due to recent changes in my project dataset, the day still proved to be highly valuable.

 

I had the chance to see a wide range of presentations from fellow students and colleagues. Some of the work provided direct inspiration for my own research, while others helped to broaden my perspective on the diverse approaches within our field. I was particularly struck by the experimental-based studies on display, which were not only highly innovative but also showed real potential for future impact.

 

In the afternoon, the workshop on research funding applications was especially useful. It gave me a first insight into the key steps, structure, and approaches involved in applying for research grants. This will no doubt be very important as I continue to develop my academic career.

 

Overall, the event was an excellent opportunity to learn, connect, and reflect on both my own project and the wider research landscape.

Group of student presenting in front of a room or people
Dragons Den team presenting at the 2nd Annual PSRC Pharmacy Conference 2025 from left to right: Ashley Chiang. Monica Ogunbowale, Henry Song, Nutifafa Crown, Rajeev Shresthra, Liyuan Zhu

Co-authors: Domna Salonen, NIHR Newcastle PSRC PhD student Haley, Joanne and Carol from the co-development group

Patient safety research considers various matters of life, death and health. These are not any academic topics. For many people, these are experiences they have lived through and are living with.

 

Before I started my research training, I became a practitioner. Mental health occupational therapy taught me a lot about healthcare and relationships. I learned that it is wise to listen to patients. Two different people can have the same condition, but completely different experiences. I also learned that it is caring to have difficult conversations. At its best, healthcare is about moments when a person in pain gets to talk with someone who is wise and caring. Both the patient and the practitioner use their voice, both listen, both learn.

 

Now I am learning to research. I have clear boundaries between how I engage with people as a researcher and as a therapist. There are great differences in how to build and navigate relationships in each role. As different as it is to show up as a researcher and as a practitioner, there are some similarities. At its best, also research is about people having good conversations. Researchers and people with personal experience get together to speak, listen and learn.

Cups of tea or coffee on a table

In my doctoral research, I work with a group of people who I have met through my previous projects. Different group members have personal experiences to share. Some know how it feels to live with addiction, and how it is to recover. Some have been family carers for someone with mental health problems. The common ground is that we all have a strong idea on what mental health support is at its best and at its worst.

 

We all bring with us our own reasons and motivations to do our bit in research:

 

Joanne: I want to improve things for others. I want to make positive, long-lasting change easier for everyone: professionals, policymakers, patients, families.

Haley: I want people’s voices to be heard by those who make big decisions at the higher levels. Research is a vital help.

Domna: I research because I want to understand how health systems can grow in wisdom and care. In this group, I can test my ideas and connect with practice memories.

Carol: I want to share my lived experience as a carer by helping with research and use it to help make change for future generations. 

 

Together, we work with clear ground rules. One person speaks at a time, everyone listens. If someone shares a personal story in the room, it stays in the room. We agree and disagree with uncompromising respect. Honesty is essential and expression is free – we can swear, but not at each other.

 

While we keep the conversation flowing, we get things done. We have spent time talking through the logic behind the project. We have developed information sheets for research participants. We have thought through scenarios that could bring up ethical challenges. We prepare to make sense of data together in the next stages of the research. We have gathered ideas on who to connect with in the later stages of the project, to share findings and learning.

 

We keep the conversation alive to catch ideas and build new understanding – of healthcare and of each other. We can all agree that hope lives where people sit around a shared table and speak their minds.

A Pre-implementation Study to develop and test an Integrated Discharge Intervention (PreSIDInt study)

As part of a research project funded by the National Institute for Health and Social Care Research, Professor Hamde Nazar and Dr Evgenia Stepanova explore what happens to patients during the transition from hospital to home. In this video, they highlight the essential role of involving patients and the public through meaningful PPIE (Patient and Public Involvement and Engagement).

 

To ensure a safe and inclusive space for open dialogue, the project established two PPIE groups—a women-only group and a mixed group—each meeting four times throughout the study. These conversations offered crucial insights into real experiences of hospital discharge, revealing gaps in current research and shedding light on challenges that patients regularly face, such as feeling “in limbo”—with limited information, no clear point of contact, and uncertainty about available support.

 

Hamde and Evgenia reflect on how these contributions shaped the research and deepened its relevance and impact.

 

Programme Development Grants award NIHR205674 A Pre-implementation Study to develop and test an Integrated Discharge Intervention (PreSIDInt study)
Evgenia Stepanova, Research Associate, Nathioal Insitute for Health and care Research, Newcastle PAtient Safety Research