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Patient Involvement in Patient Safety theme

Testing and evaluating the Patient Wellness Questionnaire for Paediatrics

By Dr. Abigail Albutt

The current COVID-19 pandemic highlights just how important the timely recognition of, and response to, deteriorating patients in hospital is. Not only that, but patients and their families are being asked to monitor deterioration themselves at home and only use healthcare services if essential. In other words, patients and families are being asked to be involved in monitoring their condition and escalating their care in a manner never seen before.  In this blog, I describe a project our team has been working on for the past two years to support patient and family involvement in monitoring and identifying clinical deterioration.

Patients and families are likely to have unique knowledge of their norms and may intuitively sense if their or their relative’s condition is deteriorating. This has been especially well documented in paediatric deterioration where parents recognised signs that their child was deteriorating before healthcare staff. We wanted to understand how the expertise of patients and their families may be best utilised to support staff in the early detection of, and response to, clinical deterioration.

After speaking to healthcare staff about this topic, one suggested way to involve patients was to routinely ask them about how well they are feeling and if they feel their wellness has changed. Staff could then record patients’ views alongside routinely collected physiological measurements like temperature and blood pressure. To capture patient perceptions of changes in their wellness, we developed the Patient Wellness Questionnaire (PWQ; see below) in collaboration with patient representatives and healthcare assistants.


Initial small-scale findings were promising, and highlighted that patients were willing and able to respond to the PWQ when asked during routine observation (Click here for the full paper). Most interesting of all, the study showed that patients may be aware of changes in signs and symptoms, making them feel more unwell, before abnormalities are visible in their physiological measurements. This suggests that capturing patients’ views of their wellness using PWQ may give staff useful information to enable them to identify deteriorating patients earlier, and intervene sooner, reducing the negative impact of further deterioration (Click here for the full paper).

In 2019, I was lucky enough to receive an NIHR funded Short Placement Award for Research Collaboration (NIHR SPARC award) to spend some time in another part of the NIHR infrastructure, and conduct a research project in the area of patient deterioration. During my placement, I was hosted by Dr. Damian Roland, Consultant and Honorary Associate Professor in Paediatric Emergency Medicine at Leicester Royal Infirmary (LRI) Children’s Emergency Department. Dr. Roland has a wealth of experience and expertise in the identification of sick children in acute care settings and use of scoring systems. This was an ideal pairing to expand the research conducted within my PhD and explore using routinely recording patient-reported wellness in other populations and settings.

Parents and carers know their child best and may be well placed to recognise changes in their signs and symptoms that may need fast medical intervention. The PWQ for paediatrics aimed to capture parents (or children where appropriate) perceptions of their child’s wellness and was asked by nurses during initial assessment when parents and children first presented to the Emergency Department. Over 500 parent/child responses were captured and analysis is underway to explore how their views on their child’s wellness relate to physiological measures and outcomes for the child. This will help us to understand whether parent’s perceptions can support early recognition and response to deterioration in the Emergency Department.

The placement allowed me to gain experience working with doctors and nurses in a paediatric emergency department, an applied health setting that I have never had the chance to conduct research in before. Being in the department over a number of weeks allowed me to truly immerse myself in the setting and I was able to observe the data collection process during assessments with parents and children to have contextual knowledge of the data, gaining an in depth understanding of whether the PWQP could be embedded, and if it could enhance current practice.

Thank you to the NIHR Academy for funding my placement, and to Dr. Roland and the staff at LRI Children’s Emergency Department for making this research possible.




Plugging in the safety gaps: An integrative approach to gathering safety information from patients via Electronic Health Records

By Dr Abigail Albutt (Research Fellow within the NIHR Yorkshire and Humber PSTRC) and the Patient Involvement in Patient Safety research team

I recently attended the Sixth Annual NIHR Imperial PSTRC Symposium held in London. This year the conference had a focus on using innovations in digital technology to enhance healthcare quality and safety. A keynote presentation came from Professor David Bates, Harvard University, who is an internationally renowned expert in patient safety. Professor Bates discussed the use of patient monitoring technologies on medical surgical wards where patients are not typically continuously monitored, and how such information technologies are vital to the delivery of high quality, safe patient care. Cal Leeming, Security Advisor at River Oakfield, followed to talk about the importance of cyber security which led to a thought provoking panel discussion about this topic.

Next, Professor Rebecca Lawton, Director of the NIHR Yorkshire and Humber PSTRC chaired a panel discussion about enhancing patient and public involvement and engagement (PPIE) in safety. This discussion revealed many useful tips about how to engage patients and the public in patient safety research, particularly those from ‘hard to reach’ groups. Going to where the people are rather than inviting them to you, and finding a shared language, were proposed as key success factors. The discussion moved on to the interesting idea of whether PPIE is necessary for healthcare staff-facing interventions. Ultimately, as all interventions affect patients; the consensus was that PPIE is always necessary.

I was delighted to present a poster at the symposium, outlining one of our projects exploring how we might advance patient involvement in patient safety specifically within a primary care setting. It is now widely accepted that patients can meaningfully provide feedback on the safety of their care, and recent efforts have concentrated on novel ways of gathering this feedback. Increasingly, patients are encouraged to access their Electronic Health Record (EHR), with access associated with improved patient satisfaction and enhanced patient safety, by identifying medication errors for example.

Dr Abigail Albutt at the Sixth Annual NIHR Imperial PSTRC Symposium.

Bringing together these bodies of literature, the poster described an interview study exploring primary care user perspectives on identifying errors in their EHR and providing feedback about care experiences via their EHR. Most patients felt they would benefit from interacting with their EHR, and the majority of patients interviewed welcomed the opportunity to identify and report errors and the possibility of using EHRs as a portal to provide feedback about their care experiences.

Download the full poster 

Presenting the poster generated much discussion around the process of implementing such a system in practice. These discussions reinforced the importance of the next phase of this study, talking to primary care staff, to ensure this potential integrative approach to gathering safety information from patients in primary care is acceptable to staff. I will be presenting this work orally at the British Journal of General Practice Research Conference in March which will provide a brilliant opportunity to talk to primary care staff and begin to progress the study to explore staff perceptions.



This research is funded by the National Institute for Health Research (NIHR) Yorkshire and Humber Patient Safety Translational Research Centre (NIHR Yorkshire and Humber PSTRC). The views expressed in this article / presentation are those of the author(s) and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.