2eeccab4-e624-4137-9443-6893d09b0589 Change in treatment burden among people with multimorbidity: Protocol of a follow up survey and development of efficient measurement tools for primary care Principal Investigator: Professor Simon Fraser Start Date: 01 October 2020 End Date: 30 September 2024 Background Treatment burden is the effort required of patients to look after their health and the impact this has on their functioning and wellbeing. It is likely treatment burden changes over time as circumstances change for patients and health services. However, there are a lack of population-level studies of treatment burden change and factors associated with this change over time. Furthermore, there are currently no practical screening tools for treatment burden in time-pressured clinical settings or at population level. This is a three-year follow-up study of a cross-sectional survey of 723 people with multimorbidity (defined as three or more long-term conditions; LTCs) registered at GP practices in in Dorset, England. The survey collected information on treatment burden (using the 10-item Multimorbidity Treatment Burden Questionnaire (MTBQ) and a novel single-item screening tool), sociodemographics, medications, LTCs, health literacy and financial resource, as at baseline. Descriptive statistics were used to compare change in treatment burden since the baseline survey in 2019 and associations of treatment burden change were assessed using regression methods. Diagnostic test accuracy metrics were used to evaluate the single-item treatment burden screening tool using the MTBQ as the gold-standard. Routine primary care data (including demographics, medications, LTCs, and healthcare usage data) were extracted from medical records for consenting participants. A forward-stepwise, likelihood-ratio logistic regression model building approach was used in order to assess the utility of routine data metrics in quantifying treatment burden in comparison to self-reported treatment burden using the MTBQ. What we found Out •Among over 800 people aged 55 or older, living with multiple long-term conditions across Dorset, high treatment burden was common (about a fifth of all survey respondents) •Making lifestyle changes and arranging appointments were particular sources of difficulty. Having limited health literacy and experiencing financial difficulty were strongly associated with greater treatment burden. Having more conditions and more prescribed regular medications were also associated. •A single-item treatment burden measure was only moderately good at discriminating between high and non-high burden. •Among 300 of these people who responded to a follow up survey after an average of two and a half years, about a third experienced an increase in treatment burden. This was linked to having more than five long-term conditions and living more than ten minutes from the GP, particularly for people with limited health literacy. •A slightly revised single-item measure still only performed moderately, so it needs more development before being used in general practice. •Using data from participants’ GP records also only performed moderately at reflecting high treatment burden, so further development is needed to use routine health records to identify those at risk of high treatment burden. What difference will this knowledge make? •Given the high prevalence of high treatment burden in people living with multiple long-term conditions, healthcare professionals can legitimately engage with patients on this issue to recognise and seek to minimise avoidable burden. •Health systems (including Integrated Care Boards/Systems) should include consideration of treatment burden in policies and in service design and commissioning, aiming for ‘minimally disruptive medicine’. •Healthcare professionals can anticipate that treatment burden tends to worsen over time in a significant proportion of people living with multiple long-term conditions. •Further development of the short treatment burden questionnaire is underway in a separate NIHR-SPCR-funded study and could be introduced in primary care if it performs better. •Identifying ‘burden’ in data will be investigated in much more detail in a further NIHR-funded study Why is this important for patients, health and care providers and policy makers ? •Factors such as improving access to primary care, particularly for those living further away from services, may reduce treatment burden. •Different modes of health service delivery to specifically meet the needs of those patients more likely to feel overburdened may be needed •Improving health literacy should be an important goal for the health system •Overburdened patients may be more likely to struggle with adherence to self-management •Being overburdened may result in greater use of unscheduled care. This is a priority for the NHS and the link needs further investigation In related work we published a paper on a systematic review of system factors influencing treatment burden, led by a Southampton MSc Public Health student. This has identified important gaps in the evidence map for treatment burden. Providers and policy makers need to recognise the financial and administrative burden for patients and the lack of evidence on this: doi.org Influence of health-system change on treatment burden: a systematic review Background Treatment burden is a patient-centred concept describing the effort required of people to look after their health and the impact this has on their functioning and wellbeing. High treatment burden is more likely for people with multiple long-term conditions (LTCs). Validated treatment burden measures exist, but have not been widely used in practice or as research outcomes. Aim To establish whether changes in organisation and delivery of health systems and services improve aspects contributing to treatment burden for people with multiple LTCs. Design and setting Systematic review of randomised controlled trials (RCTs) investigating the impact of system-level interventions on at least one outcome relevant to previously defined treatment burden domains among adults with ≥2 LTCs. Method The Embase, Ovid MEDLINE, and Web of Science electronic databases were searched for terms related to multimorbidity, system-level change, and treatment burden published between January 2010 and July 2021. Treatment burden domains were derived from validated measures and qualitative literature. Synthesis without meta-analysis (SWiM) methodology was used to synthesise results and study quality was assessed using the Cochrane risk-of-bias (version 2) tool. Results The searches identified 1881 articles, 18 of which met the review inclusion criteria. Outcomes were grouped into seven domains. There was some evidence for the effect of system-level interventions on some domains, but the studies exhibited substantial heterogeneity, limiting the synthesis of results. Some concern over bias gave low confidence in study results. Conclusion System-level interventions may affect some treatment burden domains. However, adoption of a standardised outcome set, incorporating validated treatment burden measures, and the development of standard definitions for care processes in future research would aid study comparability. What are we going to be doing next? Several related studies are already underway: In the NIHR-funded MELD-B study, more in-depth exploration of the experience of living with multiple long-term conditions is underway. This study is exploring in depth the representation of the work/burden in electronic health records. See short animation here: https://www.youtube.com/watch?v=7mZptrMAapY In the NIHR SPCR-funded SPELL study, a Short Treatment Burden Questionnaire is being developed and tested, building on our findings. https://spell.blogs.bristol.ac.uk/ Work has been instigated with the Dorset Public Health team and ICS to explore the value of adding treatment burden concepts to frailty indicators to identify people who might benefit from a ‘carousel clinic’ which supports people with frailty/prefrailty in various ways. This work is ongoing With some additional ARC funding we are working with care coordinators in primary care in Southampton to take forward the learning from this study and the MELD-B study ( https://www.meldbstudy.org.uk/ ) to support and enhance their work with people living with multiple long-term conditions (MLTC): Https://www.arc-wx.nihr.ac.uk/research-areas-list/avoiding-care-escalations-through-targeted-care-coordination-for-people-with-multiple-long-term-conditions-%E2%80%93-a-knowledge-mobilisation-project Publications https://doi.org/10.3399/bjgp.2020.0883 https://doi.org/10.3399/BJGP.2022.0103 Simon Fraser delivered a BJGP podcast on this work which can be found here: https://www.youtube.com/watch?v=MLqrp4HOb7s

c1df1831-b7ba-4277-88cf-bcbed05e91b7 Pharmacological And Non-Pharmacological treatment of ADHD in Pre-schoolers: a systematic review and network meta-analysis: the PANPAP study Lead applicant: Professor Samuele Cortese Co-applicants: Andrea Cipriani, Corentin Gosling, Luis Farhat, Cinzia Del Giovane Background: Children with Attention-Deficit/Hyperactivity Disorder (ADHD) have problems with attention and need to move more than most children. About 5% of school-aged children and 2% of pre-schoolers have ADHD, respectively. This translates into almost 10,000 pre-schoolers with ADHD in the South West England area. Interventions for ADHD include pharmacological and non-pharmacological treatments. When not treated, ADHD entails a significant burden to society, estimated at more than £20,000 per year. Therefore, it is important to detect and treat ADHD in the early years to prevent the negative consequences of ADHD later in life. Experts and ADHD support groups agree that the NHS does not meet the needs of pre-schoolers with ADHD. Currently, there are either long waiting lists or no services for pre-schoolers with ADHD in the NHS. To provide the best care for pre-schoolers with ADHD, we need to make sure that the NHS offers treatments that work well and are safe. In 2018, the National Institute for Health and Care Excellence (NICE) recommended mainly non-pharmacological interventions (behavioral interventions) for the treatment of pre-schoolers with ADHD. Back then, there was a paucity of studies on other non-pharamcological interventions and on medications for ADHD in pre-schoolers. Since 2018, there has been an increasing number of studies on other types of interventions (e.g., family-based interventions and diet) and on medications. There has also been an increasing trend in some countries (e.g., USA) to use medications for pre-schoolers with ADHD. Therefore, we need to understand which is the best intervention for pre-schoolers with ADHD. Aim: To compare the efficacy and safety of pharmacological and non-pharmacological interventions for ADHD in pre-schoolers. Methods: We will not do a new study, which would be very expensive. Rather, we will use a new type of research, called “network meta-analysis”. This approach uses data from available studies to compare different types of treatments even when they have not been compared directly in the individual available studies. Therefore, we will first systematically search for published and unpublished studies of any pharmacological or non-pharmacological treatment for pre-schoolers with ADHD. We will then combine the information from these studies with a state-of-the-art statistical approach. We will finally assess the quality of the studies included in the analysis and the strength of the evidence that we will generate. We are well known experts in this type of research. The study will be conducted at the University of Southampton, in collaboration with international researchers, including a statistician with renowned expertise in this type of analysis. Impact: The findings of our research are expected to inform future regional, national and international guidelines on the treatment of ADHD in pre-schoolers. As such, our results will be disseminated to local commissioners and policy makers, NICE, and international guidelines groups such as the European ADHD Guidelines Group. We will also disseminate our findings to associations of families with children with ADHD in the Wessex area, at the national (for example, National Attention Deficit Disorder Information and Support Service, ADDISS), and international level (ADHD Europe). Findings Our findings show that both New Forest Parent Training and Methylphenidate were significantly superior to placebo/active controls in reducing total ADHD symptoms. Methylphenidate was superior to New Forest Parent Training, while New Forest Parent Training outperformed executive/attention function training. Both pharmacological and specialised behavioural parent training (NFPT) are effective for preschoolers with ADHD. While current guidelines support prioritising behavioural interventions as first-line treatment in this age group, our Network Meta Analysis found evidence of methylphenidate showing the greatest symptom reduction. The findings can inform clinical guidelines and policy.

f1f73a06-b3fc-4e9d-b46d-0ecc2e946c91 PARIEDA - Prediction of Acute Respiratory Infection outcomes prior to Emergency Department Attendance Principal Investigator: Dr Daniel Burns, Senior Research Engineer, University of Southampton, d.burns@soton.ac.uk Team: Professor Michael Boniface, Professorial Fellow of Information Systems, University of Southampton, m.j.boniface@soton.ac.uk Professor Matthew Inada-Kim, National Clinical Director-Infection, AMR & Deterioration-NHS England & Improvement, National Clinical Lead COVID NHS@home Visiting Professor, University of Southampton Chair COVID pathways group, matthew.inada-kim@nhs.net Dr Stephen Kidd, Lead Healthcare Scientist, Hampshire Hospitals Foundation Trust, stephen.kidd@hhft.nhs.uk Starts: 1/4/2023 Ends: 30/9/2024 Aim: We will help community doctors and nurses decide how best to care for patients with serious respiratory illness. The right care depends on how ill a patient is and if they will get worse. Care may include home monitoring or hospital visits. We aim to use computer algorithms to help doctors and nurses make these decisions. We expect patients to avoid unnecessary trips to hospital and to feel more supported. Background: Hospitals have had record number of emergency departments visits. Respiratory infections are almost half of the visits. Many of these patients were not admitted to hospital. This means that some patients could be cared outside of the hospital in the community. COVID-19 is a serious respiratory illness. During the COVID-19 pandemic a new way to care for patients was created. Instead of patients going straight to hospital, they were assessed in the community. Only the most serious cases were then sent to hospital. Community care and assessment is now being considered for other respiratory illnesses. Approach: We will use computer algorithms to help community doctors and nurses decide which patients are at most risk of serious respiratory illness. Risk assessment will be done using machine learning. Machine learning is a way to train a computer to categorise patients into groups using data about patients and services they use. We will use historical hospital data to identify patients in high-risk groups. The patient categories will then be used to inform community decisions before attendance at hospital. Patient and Public Involvement: Patients and public have helped develop the research through evaluation pilots for community assessment hubs. PPI will influence data usage and the use of risk groupings within care pathways. Two public members will participant in a Steering Committee. A PPI Committee will organise three workshops involving ten patients and public in the research. Dissemination: Communication will engage the public and decision makers. We will work with patients and the public to design engaging communication and seek acceptance. Our results will be published and will inform national policy.

Rajneesh Kaur and Eloise Radcliffe < Back PPI reflection on experience in attending an academic conference "Prescribing and deprescribing is something we do to patients so their viewpoint does matter." Rajneesh Kaur and Eloise Radcliffe Picture: Kinda Ibrahim, Eloise Radliffe, Nina Fudge, Jalpa and Rajneesh Kaur In September 2024 I attended an International Conference on Deprescribing in France (ICOD2). I'd been looking forward to this event since first coming to know of it about a year before. When registering for the conference it stated that they welcomed all 'researchers, clinicians and teachers in the deprescribing field'. This prompted me to email the organisers to ask if I could attend as a non-healthcare professional. They were very welcoming and reassured me that anyone can attend. I was excited not only to see what was happening at the cutting edge of deprescribing but also because I was going to meet the Southampton team in person for the first time at the conference. We had communicated over Teams before but the conference was a great way to meet each other in person. We recognised each other straight away and were in close company over the two days at the conference. The actual content of the conference reconsolidated a lot of what I had learnt about deprescribing so far. It was great to see leading figures deliver live and to be able to ask questions and have conversations with them. When mingling in the workshops and over lunch, people were interested to gain our perspective — I was attending with a good friend of mine who is also a non-healthcare professional like me, but as she is a solicitor, the healthcare professionals at the conference seemed very interested in the legal angle of deprescribing when speaking to my friend. This legal area does need exploring I feel. The viewpoint of patients and carers seemed like something the healthcare professionals valued, yet I felt it was under-represented in the conference. Prescribing and deprescribing is something we do to patients so their viewpoint does matter. I enjoyed listening to the presentation from David Gardner in particular, who shared a patient's experience, with the patient (George) interacting live on the call. This really brought to life how deprescribing can make a difference. Bringing the patient's perspective forward can bring inspiration and motivation to healthcare professionals to be more comfortable with stepping into the unknown and trying something new. I also appreciated that the conference organisers were trying to be open and ethical about their funding, especially pleased that they were not accepting funding from pharmaceutical companies. This made it seem OK that we didn't have any extravagant lunch arrangements, I'd rather that and keep the soul of the conference alive. Also, my friend and I were humbled and surprised to see that every other person at the conference was a pharmacist. It was almost as if after working with medication so closely, these pharmacists realise the harm as well as the good that medicines can do and therefore have come to the conference to understand and acknowledge the importance and challenges of deprescribing. Although deprescribing should be a part of prescribing, it is practised far less than prescribing. In fact, I would say that the benefits of deprescribing are just now being realised and are not mainstream at all. As a result, it seemed very challenging when I first set out looking for pathways to come off medication safely and only then eventually even came across the term deprescribing. The conference was international and it opened doors to meet people from other countries who were on the same page. I especially remember my encounter with a researcher from Denmark who said something very profound, she explained that it's not the patients that need educating, if we make a safe space where people can be deprescribed from medication — they will come. This researcher had struggles with a loved one who is on medication. This conference was a great platform to network and strengthen beliefs in deprescribing. It was only the second international conference ever held on this topic and I am very much looking forward to ICOD3 Eloise: One of the highlights of attending the International Conference on Deprescribing in Nantes, France, was meeting Rajneesh in-person, our highly valued and very engaged Patient and Public Involvement (PPI) team member. She has been a PPI group member of the ARC Wessex-funded MODIFY study (Medication review and deprescribing intervention for older people living with frailty in primary care) and is now chairing the PPI group for a new ARC Wessex-funded study DOMINO-HF (Deprescribing and medicines optimisation in older people with heart failure). I had previously only met her online and the conference was a great opportunity to talk in-person about the presentations and workshops by international leaders in the field of deprescribing and discuss Rajneesh’s ideas for future projects. The conference was a very welcoming and supportive environment and I would definitely agree with Rajneesh that more patients and caregivers should be represented at the conference, and will hopefully be encouraged to attend and participate in the next one, ICOD3 in 2 years time! Previous Next

Senior Research Fellow < Back Miguel Garcia-Argibay Senior Research Fellow Healthy Communities Coming soon Previous Next

28e06f68-57c1-47e6-a549-0943eeae5264 OPTIM Park - Optimization of community resources and systems of support to enhance the process of living with Parkinson’s Disease: a multisectoral intervention COMPLETE: Optimization of community resources and systems of support to enhance the process of living with Parkinson’s Disease: a multisectoral intervention (Linked to PARTNERS) Chief Investigator: Professor Mari Carmen Portillo – University of Southampton Funder : The Optim Park, April 2019-December 2022, aimed to establish the feasibility and acceptability of an intervention that will enhance the process of living with PD for patients and family-carers by building multisectoral care pathways, with a special focus on how to optimize the use of resources and systems of support in the community in disadvantaged populations of different European countries. The Optim Park consortium was composed of 4 countries (Denmark, Norway, Spain and UK (coordinators)). running according to plans considering we are reporting a period of 9 months (the project starting in April 2019). The consortium has worked efficiently and important professional and personal links have been established across partners. A total of 6 WPs were completed: 1. Patient and public involvement 2. Evidence on systems of support and integrated care for people with PD 3. Roles and working relationships between agencies and levels of care 4. Feasibility trial 5. Dissemination and 6. Management. The research design of the Optim Park project included reviews of evidence and statutory documents, qualitative research (166 interviews with people with PD, carers, stakeholders and professionals), and quantitative research (feasibility trial of a designed intervention with 220 participants including people with PD and family carers). Our findings led to the design of an intervention that consisted of introducing the PD coordinator role and personalised assessment of needs, prioritisation of needs and referral to community resources with follow up. We have developed a very strong and sustainable PPI plan for this project, and we have liaised with key national and international voluntary organisations for PD and clinical sites, which were essential for the delivery and implementation plans of our work. Dissemination of the project took place through scientific and lay routes. Additional funding has been secured throughout the life of the Optim Park project for next research steps, the PD Coordinator role in the UK, exchange opportunities for PhD candidates and the development of young researchers and postdoctoral mobility. These are our published papers Portillo, M.C. , Anita Haahr, Navarta-Sánchez, M.V. (2021). Management, levels of support, quality of life, and social inclusion in Parkinson’s disease: interventions, innovation, and practice development, Parkinson's Disease, DOI: 10 1155/2021/4681251. Portillo, M. C., Haahr, A., & Navarta-Sánchez, M. V. (2021). Management, levels of support, quality of life, and social inclusion in Parkinson’s disease: interventions, innovation, and practice development . Parkinson´s Disease , https://doi.org/10.1155/2021/4681251 . Soilemezi, D. , Palmar-Santos, A., Navarta-Sánchez, M.V., Roberts, H., Pedraz-Marcos, A., Haahr, A., Sørensen, D., Bragstad, L., Hjelle, E., Bjørnsen Haavaag, S., Portillo, M.C . (2022), Understanding support systems for Parkinson's disease management in community settings: A cross-national qualitative study. HealthExpectations, https://doi.org/10.1111/hex.13691 . Soilemezi, D. , Roberts, H., Navarta-Sánchez, M.V. Kunkel, K., Ewings,S., Reidy, C., Portillo, M.C. (2022). Managing Parkinson’s during the COVID-19 pandemic: perspectives from people living with Parkinson’s and health professionals. Journal of Clinical Nursing , DOI: 10.1111/jocn.16367. *Nielsen, T. , Kruse, N., Haahr, A., Hjelle, E.G., Bragstad, L.K., Palmar-Santos, A., Navarta-Sánchez, M.V., Pedraz-Marcos, A., Bartolomeu Pires, S., Roberts, H., Portillo, M.C . (2022). Exploring health and social services in Denmark, Norway, Spain and the United Kingdom for the development of Parkinson's care pathways. A document analysis. Health and Social Care in the Community, doi:10.1111/hsc.13970. Vester, L.B. , Haahr, A., Nielsen, T.L., Bartolomeu, S., Portillo, M.C. (2023), A Parkinson care-coordinator may make a difference: A scoping review on multi-sectoral integrated care initiatives for people living with Parkinson's disease and their caregivers. Patient Education and Counselling, doi: 10.1016/j.pec.2023.107931. Hjele, E.G. , Rønn-Smidt, H., Haahr, A., Haavaag, S., Sørensen, D., Navarta-Sánchez, V. Portillo, M.C., Bragstad, L.K. (2024). Filling the gap in service provision Partners as family carers to persons with Parkinson’s disease: A Scandinavian perspective. Chronic Illness, DOI:10.1177/17423953231174470. Navarta-Sánchez, M.V. , Palmar-Santos, A., Pedraz-Marcos, A., Reidy, R., Soilemezi, D., Haahr, A., Sørensen, D., Rønn Smidt, H., Kildal Bragstad, L., Gabrielsen Hjelle, E., Bjørnsen Haavaag, S., Portillo, M.C. (2023). Perspectives of people with Parkinson's disease and family carers about disease management in community settings: a cross-country qualitative study. Journal of Clinical Nursing, https://doi.org/10.1111/jocn.16636 . Pedraz-Marcos A, Palmar-Santos AM, Portillo MC, Navarta-Sánchez MV. Management of Parkinson's in the Community: Interests and Expectations of People Living with Parkinson's, Family Carers, Healthcare Professionals and Stakeholders in Spain. Glob Qual Nurs Res. 2025 Nov 3;12:23333936251384434. Who did we work with? Coordinator/chief investigator of the project: United Kingdom : University of Southampton, Professor Mari Carmen Portillo Country leads : Spain: Autonomous University Madrid, Dr Victoria Navarta Sanchez Spain, Fundación La Princesa, Dr Lydia López Denmark: VIA University College, Dr Anita Haahr Norway: University of Oslo, Dr Line Kildal Partners: Parkinson’s disease associations in the four countries

Healthier Southampton Many of the things that affect our health also affect the environment. For example, the foods that we eat and whether we walk or drive. Some of these things also affect whether we can access good quality, nutritional food- for example, what lunches are provided by schools or colleges, and whether people can get a local allotment. It can be useful to see weight, food, and the environment as part of a complex system, a web of things that all influence each other. We are running a research exercise with local community members in Southampton on the 26th November, and we’ll share the results of that meeting here. We will run some more community gatherings on 3rd December 2025 where we will talk through the results of our research exercise and take part in a series of activities in small groups designed to explore the Southampton system in more detail. If you have any questions or comments about this research, please email j.l.barker@soton.ac.uk .

54d3d6a4-2f97-4fa8-8c83-e41613f3b35d Co-POWeR - Consortium on Practices of Wellbeing and Resilience in BAME Families and Communities Principal Investigator: Professor Iyiola Solanke, University of Leeds Team: Professor Maria Stokes, School of Health Sciences, University of Southampton; Professor Sabu Padmadas, School of Economic, Social & Political Sciences, University of Southampton; Professor Monica Lakhanpaul, Institute of Child Health, University College London; Professor Claudia Bernard, Professor of Social Work. Department Social, Therapeutic and Community Studies, Goldsmiths College; Professor Shirin Rai, Politics and International Studies, University of Warwick; Professor Raminder Kaur, School of Global Studies, University of Sussex; Professor Gargi Bhattacharyya, Law and Social Sciences, University of East London; Professor Florence Ayisi, Faculty of Creative Industries, University of South Wales; Professor Anna Gupta, Department of Social Work, Royal Holloway, University of London. Duration: 18 months Summary Two viruses - COVID-19 and discrimination - are currently killing in the UK (Solanke 2020), especially within BAMEFC who are hardest hit. Survivors face ongoing damage to wellbeing and resilience, in terms of physical and mental health as well as social, cultural and economic (non-medical) consequences. Psychosocial (ADCS 2020; The Children's Society 2020)/ physical trauma of those diseased and deceased, disproportionate job-loss (Hu 2020) multigenerational housing, disrupted care chains (Rai 2016) lack of access to culture, education and exercise, poor nutrition, 'over-policing' (BigBrotherWatch 2020) hit BAMEFC severely. Local 'lockdowns' illustrate how easily BAMEFC become subject to stigmatization and discrimination through 'mis-infodemics' (IOM 2020). The impact of these viruses cause long-term poor outcomes. While systemic deficiencies have stimulated BAMEFC agency, producing solidarity under emergency, BAMEFC vulnerability remains, requiring official support. The issues are complex thus we focus on the interlinked and 'intersectional nature of forms of exclusion and disadvantage', operationalised through the idea of a 'cycle of wellbeing and resilience' (CWAR) which recognises how COVID-19 places significant stress upon BAMEFC structures and the impact of COVID-19 and discrimination on different BAMEFC cohorts across the UK, in whose lives existing health inequalities are compounded by a myriad of structural inequalities. Given the prevalence of multi-generational households, BAMEFC are likely to experience these as a complex of jostling over-lapping stressors: over-policed unemployed young adults are more likely to live with keyworkers using public transport to attend jobs in the front line, serving elders as formal/informal carers, neglecting their health thus exacerbating co-morbidities and struggling to feed children who are unable to attend school, resulting in nutritional and digital deprivation. Historical research shows race/class dimensions to national emergencies (e.g. Hurricane Katrina) but most research focuses on the COVID-19 experience of white families/communities. Co-POWeR recommendations will emerge from culturally and racially sensitive social science research on wellbeing and resilience providing context as an essential strand for the success of biomedical and policy interventions (e.g. vaccines, mass testing). We will enhance official decision making through strengthening cultural competence in ongoing responses to COVID-19 thereby maximizing success of national strategy. Evidenced recommendations will enable official mitigation of disproportionate damage to wellbeing and resilience in BAMEFC. Empowerment is a core consortium value. Supporting UKRI goals for an inclusive research culture, we promote co-design and co-production to create a multi-disciplinary BAME research community spanning multi-cultural UK to inform policy. CO-POWeR investigates the synergistic effect on different age groups of challenges including policing, child welfare, caring and physical activity and nutrition. WP1 Emergency Powers investigates these vague powers to understand their impact on practices of wellbeing and resilience across BAMEFC. WP2 Children, Young People and their Families investigates implications for children/young people in BAMEFC who experience COVID-19 negatively due to disproportionate socio-economic and psychosocial impacts on their families and communities. WP3 Care, Caring and Carers investigates the interaction of care, caring and carers within BAMEFC to identify how to increase the wellbeing and resilience of older people, and paid and unpaid carers. WP4 Physical Activity and Nutrition investigates improving resilience and wellbeing by tackling vulnerability to underlying health conditions in BAMEFC. WP5 Empowering BAMEFC through Positive Narratives channels research from WP1-4 to coproduce fiction and non-fiction materials tackling the vulnerability of BAMEFC to 'misinfodemics'.

894e3c82-d20e-4fbc-a56a-7d96277ba61e PARTNERS Project: Development and implementation of a digital tool for multisectoral support and management of long-term condition PARTNERS Project: Development and implementation of a digital tool for multisectoralsupport and management of long-term condition Principal Investigator: Professor Mari-Carmen Portillo Co Applicants : Line Bragstad, Dr Dorit Kunkel, Dr Kat Bradbury, Dr Lindsay Welch, Hayden Kirk, Dr Caroline Barker, Sandra Bartolomeu Pires, Christopher Edwards, Lindsay Cherry, Francesca White, Caroline Aylott, Cathal Doyle. Partners: University of Southampton, University of Oslo, Hampshire and Isle of Wight NHS Foundation Trust, University Hospital Southampton NHS Foundation Trust, Hampshire and Isle of Wight ICS, Versus Arthritis, and Parkinson’s UK. Lay Summary Background to the research : Self-management is an approach to help people with long term conditions manage their health daily. Existing NHS self-management tools focus on healthcare (medication management, appointments) and fail to capture aspects of how people live with and adjust to long-term conditions. This includes social support (family/friends) and other resources and networks available like the voluntary sector, industry and community groups.We have created an intervention (an action to improve a situation or prevent it getting worse) to support self-management for people with Parkinson’s Disease and their family/carers. This intervention recognises the role of social support, voluntary sector, industry, and community groups in adjusting to living with a condition. Our next step is toadapt this intervention to the needs of people living with other conditions like Arthritis and for those living with more than one condition and create a digital tool. Aim of the research : To develop, implement and evaluate a digital tool that supports the management of people with Parkinson’s Disease and/or Arthritis. The tool will support professionals and other organisations to connect, share resources and optimise communication and referrals, leading to more personalised and cost-effective use of resources (beyond healthcare) in the community. Design and methods: The research will take place in community settings in Wessex. We will prioritise disadvantaged groups (those less comfortable using technology and less able toaccess available resources and support). We will : 1. Work with our patient and public involvement (PPI) representatives, relevant voluntary organisations, health and social care providers, and key people involved in policy making and NHS strategy. They will have a voice ineach decision to ensure our tool is relevant and acceptable to those using it. 2. Host discussion groups with people with Parkinson’s Disease and/or Arthritis and theirfamily/carers to understand the positive and negative aspects of existing digital tools, from a patient perspective. 3. Design our self-management tool. 4. Test the tool through two primary care surgeries (GP) and voluntary organisations (Parkinson’s UK and Versus Arthritis).Testing will help understand how the tool is used and what helps or hinders its success. Deliverables : The research will generate: a digital tool to support more effective self-management of Parkinson’s Disease and/or Arthritis, recommendations for policy development, evidence for how to improve NHS services. Public Patient Involvement: We willwork with people with Parkinson’s Disease and/or Arthritis and their families/carers. We will work together as equal partners to define their level of involvement, roles, methods to input and training needs. We will also explore what works best or what we should do differently intheir involvement. Dissemination : We will share our learning across the different groups involved. This will include presentations, policy briefings, newsletters, and public events. What did we find out? We found that people with Parkinson’s and/or arthritis, their carers and professionals involved in their care wanted a digital app that was: • Simple • Easy to navigate • Hybrid – in person contact also signposted Included: • Community resources from voluntary/charity sector • Free or inexpensive resources • Links to peers/buddy for support What next? PARTNERS 2 has evolved, as a continuation project. This allowed time for: A suitable digital company to be found with previous experience of working with people with health condition Full briefing of the digital company about what was required of the digital web app. Development of a 'Life Boost' app Trade marking 'Life Boost' Real-world evaluation of the app with Social Prescribers in Hampshire Linking 'Life Boost' to MyMedical Record (University Hospital Southampton NHS Foundation Trust) The PARTNERS 2 project will now: Ga in full exposure by having it adopted onto the My Medical Record platform at the University Hospital Southampton NHS Foundation Trust Be used in the real-world and a business/company/organisation will be sought to adopt the app for further development and management

Research Fellow < Back Stephanie Hughes Research Fellow Ageing and Dementia Steph Hughes is a Research Fellow in the ARC Wessex Mental Health Hub at The University of Southampton conducting research into alcohol use disorder in older adults. Steph has a PhD from The University of Southampton where she explored the impact of significant others on men undergoing active surveillance for prostate cancer. Steph has expertise in qualitative research, self-management of illness and intervention development. Past projects span topics such as irritable bowel syndrome, chronic pain, weight management and primary care communication. Previous Next

e57a4343-00e9-4e08-9056-d084e47c8870 Reframing responsibility through public empowerment: examining environmental cues influencing poor diet Team Dr Nestor Serrano-Fuentes. Senior Research Fellow. School of Health Sciences, University of Southampton. Dr Lyn Ellett. Associate Professor of Clinical Psychology. School of Psychology. University of Southampton. Prof Mari Carmen Portillo. Professor of Long-Term Conditions. School of Health Sciences University of Southampton. Prof Janis Baird. Professor of Public Health and Epidemiology, MRC Lifecourse Epidemiology Centre, University of Southampton. Prof Christina Vogel. Deputy Director, Centre for Food Policy City, University of London. Rachael Eckford, Occupational Therapist Partners Dr Lindsay Welch. Clinical associate professor at the University of Bournemouth. Previous Program Lead Health Inequalities (Health Innovation Wessex) Start: 27th February 2023 End: 30th September 2024 What's the issue? The United Kingdom (UK) consumes the most ultra-processed diet of any country studied in Europe. This scenario indicates that poor diets have become normalised in this country. Consequently, there has been a dramatic increase in diet-related conditions, such as obesity, type 2 diabetes, cardiovascular disease or several types of cancer and the financial costs attached to them. The UK food system is a complex setting for individuals to navigate. Individuals choose which foods to purchase and eat based on many determining factors (both internal and external). Our food environment has changed in the last 50 years and the term ‘obesogenic environment’ is now used to describe some of our food environments. Obesogenic environment meaning a setting which encourages weight gain and discourages weight loss by making unhealthy foods readily available. The environment we live in is a large factor for determining our food choices and poor-quality diets cluster in disadvantaged groups, for example those with low levels of education, low incomes or living in deprived areas. Responsibility for our food choices is culturally framed on the individual What did we find? I n the ARC Wessex project ‘ Reframing responsibility through public empowerment: examining environmental cues influencing poor diets ’ we completed a review of thirty-six articles. Studies exploring public perceptions of poor diets acknowledged personal and broader systems drivers, with individual responsibility predominating across studies. Research analysing media portrayals showed similar patterns of individual responsibility among right-leaning newspapers, which focused on individual lifestyle changes. However, left-wing newspapers highlighted the role of the food industry and the government. Studies analysing government policies identified citizens as the primary agents of change through rational decision-making. Policies and media portrayals provided limited emphasis on these populations, with individual responsibility narratives prevailing. Following this review, we undertook a qualitative study with 15 individuals with obesity/overweight exploring their perceptions of responsibility for poor food diets, with particular attention to how individuals understood and positioned personal and environmental influences on food practices. Our findings highlighted that despite food choice being complex and having many external and internal factors, the public perception has been framed to hold the individual accountable for their food choices. There is consensus that lifestyle factors alone will not fix the problem of obesity and therefore individuals being ultimately responsible for their diets is not the solution. NIHR ARC Wessex supported this project, enhancing opportunities for dissemination, implementation and networking with key local authorities and organisations. We expect our findings to raise awareness of good food choices and the development of tools that could support community care of people with obesity or at high risk of obesity. Further policy work is needed to address the root causes of diet-related health inequalities to implement mandatory regulatory frameworks that set standards for commercial practices. Developing tools to raise awareness of poor diet choices and increase informed decisions Research papers and books Serrano-Fuentes N, Rogers A, Portillo MC. Beyond individual responsibility: Exploring lay understandings of the contribution of environments on personal trajectories of obesity. PLoS One. 2024 May 8;19(5):e0302927. doi: 10.1371/journal.pone.0302927. Serrano-Fuentes N, Ellett L, Vogel C, Baird J, Tavares N, Portillo MC. Mapping how responsibility for poor diets is framed in the United Kingdom: a scoping review. Public Health Nutrition. 2025;28(1):e167. doi:10.1017/S1368980025101079

Clare Phillips - Hepatology Nurse Specialist, MSc Global Health < Back My journey into research My interest in research came as a bit of a surprise. Clare Phillips - Hepatology Nurse Specialist, MSc Global Health My interest in research came as a bit of a surprise. In 2016, I started an MSc in Global Health part-time at BSMS. I had previously completed the Diploma of Tropical Nursing at London School of Health and Tropical Medicine and was working as a clinical nurse specialist in viral hepatitis at the time. I started the MSc thinking I’d be more interested in the policy side of the course or, where it might take me from a clinical perspective. But, it was working with Prof Gail Davey’s research group, for my MSc dissertation, that was the game changer. Prof Davey’s work in Ethiopia had shed light on the neglected tropical disease, podoconiosis , in quite a remarkable way - improving care for those living with the condition, giving a voice to the seldom heard, influencing national policy, challenging stigmatising attitudes and building research capacity (across disciplines) within Ethiopia. It was hugely inspiring and a clear example of how research had enormous scope to influence change. Having completed my MSc, I began voluntarily joining various research projects that were going on at work – collecting data for some, writing manuscripts for others. This helped me build my CV and confirmed that a career in research was right for me. I moved back to Southampton in summer 2019 and began working for the Alcohol Care Team at University Hospital Southampton. Inadvertently, I stepped into a research-focused team, who wanted to use research to make a difference to our patient group. And it made all the difference. In 2021, with my manger, Anya Farmbrough, and Richard Darch from Adult Safeguarding, I wrote a paper challenging perceptions of self-neglect in patients with alcohol use disorder ( More than a ‘lifestyle’ choice? Does a patient's use of alcohol affect professionals' perceptions of harm and safeguarding responsibilities when it comes to self-neglect? A case study in alcohol-related liver disease | Gastrointestinal Nursing ( magonlinelibrary.com ) ). With support from Anya and our medical lead, Prof Julia Sinclair, I applied for the ARC Wessex Mental Health (Alcohol) Internship in 2022. My internship focused on older adults with alcohol use disorder (AUD), analysing some pre-collected service evaluation data and working on a systematic review of AUD interventions in this cohort. The internship gave me the time (and funds) to focus on developing gaps in my skillset e.g. I took an online statistics course and had the opportunity to work 1:1 with the ARC statistician to refresh my statistics skills. I am not sure how or when I would have been able to do this without the internship. The internship also provided opportunities to present my work, from academic conferences to departmental meetings and PPI groups. This allowed me to get familiar with answering direct questions about my research, and how to deal with the trickier ones! As a result of the ARC Wessex Internship, I had 2 abstracts accepted at national conferences this year ( 1586 OLDER AGE IS AN IMPORTANT PREDICTOR OF NON-REFERRAL TO COMMUNITY ALCOHOL SERVICES FOLLOWING AN INPATIENT EPISODE: FINDINGS FROM | Age and Ageing | Oxford Academic ( oup.com ) , P28 Mortality and cause of death in patients aged 50–59, 12 months after review by an alcohol care team | Gut ( bmj.com ) ). The internship also got me thinking about my next steps and enabled some key conversations to take place. I am certain my future career is a research-focused one and am currently working on my application for Round 11 of the NIHR Doctoral Fellowship programme. I have an important research question that needs answering, and so its full steam ahead! More about Clare Previous Next