Professor Patricia Wilson PhD, MSc, BEd (Hons), RN, NDN
Professor of Primary and Community Care
- 01227 816093
I was appointed CHSS Professor of Primary and Community Care in April 2014 to lead the new Kent Academic Primary Care Unit (KAPCU). The unit will play a major role in ensuring that Kent will benefit from primary and community care which is a national example for quality and patient-centred care. Good primary care forms the bedrock of the NHS and leads to better health outcomes. Before joining CHSS I was a Reader in Patient Experience in the Centre for Research in Primary and Community Care at the University of Hertfordshire.
My career began in NHS community nursing - I was attracted by working with patients and families as partners in the community. My particular interest is in long term conditions management and in involving patients, carers and the public in health services at all levels - including a say in NHS structures. During the 1990’s I moved into higher education and was programme lead for the specialist community nursing degree and developed an MSc Advancing Practice in Primary Care.
In 1999 the white paper “Our Healthier Nation – Saving Lives”, first mentioned the concept of “expert patient”. This was a turning point for me, bringing together a long-held professional interest, policy agenda and some personal experience of managing a long term condition. It led to a PhD, programme of research and a series of publications charting the development of chronic disease self-management programmes both in the UK and internationally. This work helped deliver local Expert Patients Programmes, and contributed to national and international work developing self-management programmes for people with learning disabilities, sickle cell anaemia, cancer and other chronic diseases.
Over the past six years my interest in involving people in their care at self-management level has extended to the field of patient and public involvement (PPI) within NHS structures and health research. I have a national and international PPI profile and was part of a group working to establish more regionally focused and synergistic PPI by bringing together component parts of the research infrastructure – CLAHRCS, AHSN, RDS and the research networks. I co-led the PPI research theme within the newly formed CLAHRC East of England. I was a member of the Eastern Academic Health Science Network node board and advised particularly on PPI. I was appointed to the NIHR INVOLVE advisory board and Self-Management UK (formerly the Expert Patients Programme) national advisory panel in 2012, and sit on the Editorial Board of a new journal, Research Involvement and Engagement.
In my previous role I was part of the Primary Care Research Network East of England management group, with specific remit for community services research. In 2014 I was appointed Primary Care Academic Speciality Lead, Division 5, Kent Surrey and Sussex NIHR Clinical Research Network. I also sit on the editorial board of Primary Health Care Research and Development, and was recently appointed to the South East Research for Patient Benefit regional funding committee having previously served on the East of England committee.
In 2015 I was appointed as co-convenor of the International Collaboration for Community Health Nursing Research, and link with a number of international colleagues.back to top
Also view these in the Kent Academic Repository
Identifying stroke/TIA survivors' needs and preferences KeMIST This new project puts patients’ long-term needs and preferences at the heart of a new NHS service to improve patient outcomes. Specifically, it aims to reduce the chance of recurrent strokes or cardiovascular events and develop a long term support service for patients beyond stroke rehabilitation. Little is known about how stroke/TIA survivors’ perceive the burden of using long-term medicines, their needs and preferences for medicines support, or how these change over time. Qualitative interviews with survivors of stroke or TIA (and their hospital and community carers), and community pharmacists. The data gathered around problems encountered and support needed by those prescribed life-long, multiple medicines will inform the design of a toolkit for patients, carers and Health Care Professional (HCPs) to identify the medicine support needed by individuals. The research will inform design of a suitable pharmacy support service making use of relevant available technologies. People affected by stroke/TIA and HCPs will be involved at all stages of the project to ensure the new service is fit for purpose. Start date: 01/02/2016 End date: 31/01/2018 Funder: Stroke Association Funding: £58,198
Do 'Breathe Easy' patient groups improve health outcomes in chronic lung disease?
Evaluation of the benefits of the British Lung Foundation's 'Breathe Easy' peer support network. ‘Integrated Breathe Easy’ is a two year evaluation undertaken on behalf of the British Lung Foundation (BLF) funded by the Cabinet Office through Nesta. It will assess whether integrating Breathe Easy groups into local respiratory care pathways results in better health and well-being outcomes for patients and carers. More than 230 BLF ‘Breathe Easy’ voluntary patient groups meet monthly across Britain. They aim to develop knowledge and increase self-management levels among those with long term lung disease including COPD, asthma and sarcoidosis. They offer support from health professionals and social activities. The study compares three cohorts to measure impact and assess outcomes: groups not integrated into the NHS care pathway new groups which are integrated control group - patients not attending Breathe Easy, but would be willing to. The focus is on patient understanding and self-help. Data collection in year one will explore patient self-efficacy levels, and their knowledge of where to seek help and advice. Carers will also be questioned about their confidence and burden of care. Year two will focus on cost effectiveness of the groups. Rowena Merritt leads and project manages the CHSS research team which includes Research Fellow Ferhana Hashem, Health Economist Olena Nizalova and Statistician Tracy Higgins. Start date: 01/04/2014 End date: 30/04/2016 Funder: British Lung Foundation Funding: £74,725
Improving competencies of PWPs/Counsellors to work with people with Long Term Conditions
Government policy has highlighted the need to extend NHS mental health service provision to meet the needs of those with co-morbid mental and physical health conditions. To work effectively with this population, mental health workers require specialist training in supporting people with long-term conditions (LTCs). We worked with NW London Collaboration of Clinical Commissioning Groups to develop, deliver and evaluate training focusing on three common conditions: diabetes, chronic obstructive pulmonary disease (COPD) and coronary heart disease (CHD). Training was delivered to 60 NHS mental health workers via 2-day interactive workshops. An online version of the training programme was also developed. Training was developed with input from stakeholders including clinicians, service managers and service users. Participants’ knowledge of the three conditions significantly following training, along with their understanding of the role of psychological therapies in supporting people with LTCs and confidence in using specific assessment and intervention methods. The online training programme launched in October 2017 and is available at http://www.trainingltcs.org.uk/ Start date: 1/3/17 End date: 31/12/17 Funder: NHS NW London CCG Funding: £110,678 Improving competencies of PWPs/counsellors to work with people with LTC - Read the Final Project Report (December 2017) (pdf)
Realist Evaluation of Autism Service Delivery
Realist Evaluation of Autism Service Delivery: (RE-ASCeD) How should child development and child and adolescent mental health teams provide timely and cost-effective, high quality diagnostic assessments of children with possible Autism? Autism is a complex neuro-behaviour condition. People with autism have difficulty with social interaction and in communication with others. They may struggle with change, and repeat actions over and over. Life may be very anxious or stressful. The signs of autism can occur at any age but often appear in the first two years of life. There is no one type of autism, but many, so the condition is now called autism spectrum disorder (ASD). Autism is lifelong but this study is only about children. Caring for a child with autism can be difficult and can sometimes be tough on the whole family. Specialist doctors diagnose autism. When general practitioners think a child might be on the autism spectrum, they refer them to a specialised team. These specialist teams carry out assessments. The number of children referred for assessment has been increasing recently. Diagnosing autism is not easy. One reason is that different specialist professionals might need to assess children. Another reason is that professionals might assess children for more than one condition. Our recent survey found some families spend over one year waiting for a diagnosis. The 2019 NHS England Long Term Plan made services for people with autism a priority. The Long-Term Plan aims for more families to get the right help, quicker. To do this, waiting times need to be shorter so children will get the right support sooner. This project aims to guide the people who plan services for families and children. Different teams and services that do autism assessments will help us. We will ask teams and services: What speeds up diagnosis? What delays diagnosis? The study comprises four work packages: 1. We will review research in the UK and abroad to find evidence and ideas that will help speed up diagnosis. 2. We will survey professionals who work for the specialist teams who diagnose autism. The survey will be about each step in the process and ask which professionals get involved. We will ask about the number of children they see and the time it usually takes to reach a diagnosis. This will give us a picture of the national situation. 3. After the national survey, we will select around six or eight teams. These teams will be using different and innovative approaches. We will study those approaches. We will talk to clinical staff, managers, referrers, parents and young people. Parents and young people will have gone through the diagnostic process. We will ask parents and young people about their experiences and views. We will review the steps in the diagnosis process for about 70 children in each service. We will find out how long each assessment takes, how much clinical time it takes, and how much it costs. We will compare findings across teams and services. 4. We will have national meetings with autism experts and patient groups. We will show them our findings. These groups will agree recommendations for practice. Clinical teams, service managers, commissioners, parents’ groups, and NHS England will receive recommendations. The research team has specialist expertise in autism, health services, economics, and statistics. The team includes public and NHS England partners. This will ensure we take account of the needs of families and we send the findings to people who plan services. This study is a collaboration with University of Surrey, Newcastle University, Council for Disabled Children, Autistica and others. See https://www.sussexcommunity.nhs.uk/get-involved/re-asced-research.htm for details. Research Team: PI: Dr Ian Male, Consultant Community Paediatrician, Sussex Community NHS Trust, Honorary Senior Lecturer Brighton and Sussex Medical School Co-PI/project manager: Dr William Farr, Senior Research Fellow in Paediatric Neurodisability, Honorary Clinical Research Fellow Brighton and Sussex Medical School Methodological expertise, realist evaluation: Tricia Wilson, Professor of Primary and Community Care, CHSS, University of Kent Start date: 31/10/19 End Date: 30/6/22 Funder: Sussex Community NHS Foundation Trust Funding: £66,463 Publication: Abrahamson, V., Zhang, W., Wilson, P., Farr, W. and Male, I. (2020). A Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD): Which diagnostic pathways work best, for whom and in what context? Protocol for a rapid realist review. BMJ Open [Online] 10:1-8. Available at: https://bmjopen.bmj.com/content/10/7/e037846.
COV-VOL: Community-based volunteering in response to COVID-19
How can a community-based volunteer workforce be rapidly and safely implemented? What is the impact of a community-based volunteer workforce on providing support for self-isolating and vulnerable older members of the community during the COVID-19 pandemic? This project, led by Tricia Wilson, is funded by the NIHR ARC KSS. Research Team: CHSS, University of Kent: Professor Patricia Wilson (CI), Dr Julie MacInnes (Project Manager), Sabrena Jaswal (RA), Dr Vanessa Abrahamson (advisory group), BSMS Kat Frere-Smith (RA), Dr Priya Paudyal (advisory group), University of Surrey Prof Heather Gage (health economics), Dr Bridget Jones (RA), Dr Jo Armes (advisory group) ARC/AHSN Rebecca Sharp (implementation lead) Project Objectives: Conduct a rapid review of existing evidence on the implementation and impact of community-based volunteers supporting older vulnerable people. Map the range of approaches to organising and supporting volunteers within the statutory and third sector organisations working in the community across Kent, Surrey, Sussex (KSS). Ascertain how Covid-19 has impacted on pre-existing volunteer services supporting older vulnerable people. Explore the experience and impact of KSS COVID-19 volunteers through undertaking qualitative telephone interviews with health and social care practitioners, those organising and supporting volunteers, volunteers and recipients of their support. Identify how organisations and volunteers identify and communicate with recipients of support, particularly those who do not use digital (excluding phones) methods. Develop a set of key messages for KSS local authority (community hubs), local resilience forums, health and social care providers, voluntary organisations and community groups in order to facilitate safe implementation of a COVID-19 volunteer workforce. Start date: 4 May 2020; End Date: 4 September 2020 Funder: NIHR via Sussex Partnership NHS Trust Funding:£24,339
Embedding research into Encompass, an NHS England Five Year Forward, New Models of Care, Vanguard site
Published in 2014, the NHS England’s Five Year Forward View saw the beginning of an ambitious programme to develop new models of care. The result has been the establishment of new ways to organise health services being piloted in a number of ‘Vanguard’ sites around the country. The Encompass Vanguard sits within the Canterbury and Coastal Clinical Commissioning Group (CCG) and involves general practices in Whitstable, Faversham, Canterbury and surrounding areas including Ash and Sandwich. Serving a population of 170,000 people, Encompass is formed into a new model of integrated care known as a Multispecialty Community Provider and is focussed on moving specialist care from hospitals to the community and in particular emphasising on integrated care for older people – a key element within the Five Year Forward View. The new models of care aim to address longstanding problems in the UK health system. Integration of health and social care services will ultimately meet patients’, service users’ and carers’ needs more effectively. Whilst shifting services from hospital to community settings, and closer health and social care service integration are far from new concepts, developing effective new ways of community working to address health and social care demands remains a challenge. A research office has been established as a joint partnership between the Encompass Vanguard and CHSS. The office supports research undertaken within the 16 practices that make up the Encompass group and also conducts and supports research and evaluation of aspects of Encompass’ activities. The research function ensures delivery of high quality national portfolio studies working in collaboration with the NIHR Clinical Research Network and generates and facilitates research activity within all the member practices. The aim is to make research part of the normal everyday activity of the practices and use the knowledge generated by new research to improve care quality. The research will ultimately contribute to the development of the new model of care, provide educational and development opportunities for practice staff and improve staff recruitment and retention. Start date: 01/02/2016 End date: 31/03/2018 Funder: Encompass Vanguard Funding: £164,000
Optimum Hospice at Home services for end of life care
What are the features of Hospice at Home models that work, for whom, and under what circumstances? Offering people a choice about where they receive their care at the end of life is central to UK policy and the numbers of people wishing to die at home is increasing. We also know from work undertaken with the general public that care at home is an important concern for many people. Much effort has been invested in health services to support care at home, including services called “Hospice at Home” (HAH) which aim to offer hospice care in the individual’s home. The aim of hospice care is to improve the quality of life of people who have an incurable illness up to the point of death. This includes medical, emotional, social, practical, psychological, and spiritual care, as well as addressing the needs of the person’s family and carers. Currently a range of different HAH services exist in the UK and it is unclear which features of these services enable better care and outcomes at the end of life for patients and families. Professor Claire Butler based at CHSS is leading a national study to answer: What are the features of Hospice at Home models that work, for whom, and under what circumstances? The project is led by the University of Kent in collaboration with the University of Cambridge, University of Surrey, Oxford University Hospitals NHS Foundation Trust, Pilgrim’s Hospice and the National Association for Hospice at Home. The project is spearheaded by a team of post-doctoral researchers based at the University of Kent and the University of Cambridge. Start date: 01/02/2017 End date: 22/03/2021 Funding: National Institute for Health Research: Health Services and Delivery Research (project 14.197.44) £760,162 More about this project: 1. Study Design The study started with a national telephone survey of all HAH services to find out about the services they provide. We contacted hospice at home service managers identified through the Hospice UK and National Association of Hospice at Home directories to take part in a survey. We asked the service managers to provide information on how they are funded, which health care professionals work for them and what kind of roles they have, and whether they provide care overnight and at weekends. We had a fantastic response to our phase 1 survey with 70 HAH services taking part (see map of survey responders left). The results of this survey helped us to understand the different types of HAH services running nationally and to select a number of HAH services as case study sites for in depth investigation in Phase 2 of the project. A method called ‘realist evaluation’ is being used to gain an understanding of how the services delivered within the different models impact on patients and carers and whether they are supported and cared for as well as possible. We will also compare the costs of delivering services in the different models, and talk to providers of services about local issues that help or hinder the delivery of a good service. The final phase of the project (Phase 3) will involve presentation of our initial findings and discussion with stakeholders in two workshops to validate interpretation of the data and to refine our understanding of what works, for whom, and under what circumstances. These consensus events will help to develop our findings into guidelines for services and commissioners for developing HAH services matched to local needs. 2. How will we make sure the research is on the right track for patients and families? We are aware that the project needs to be conducted sensitively and we are experienced in undertaking research with bereaved people. We are working closely with patients and members of the public to advise us on the most sensitive approaches. Our team includes two lay co-applicants who are members of the project team and involved in co-producing the research with us. Both have experienced bereavement as a carer and they have a key role in the team to ensure a thoughtful and ethically sound approach. One of our lay co-applicants recently presented with Charlotte Brigden (Pilgrims Hospice), at the RDS South East/INVOLVE UK event in London. They showcased the OPEL H@H study as an example of public co-production in research. The project also benefits from input from independent experts and public members who sit on the Project Oversight Group for the study. This group oversees the project progress and ensures the study delivers on its objectives, produce findings relevant to the public and national healthcare services. It also ensures that the study has involved public and patient input throughout. Throughout the project we have been reviewing and documenting the PPI input in to the project and how this has changed the project and our approach over time. See a link to this overview below. PPI feedback Year 1 PPI feedback Year 2 3. How will we make the research findings available? Publication of the full and complete account of the research will be in the NIHR HS&DR Journal. This will allow the research to be freely and publically available via the NIHR journals library website. We will also publish our findings as they arise in peer reviewed journals such as BMJ, Social Science and Medicine and British Journal of General Practice to reach broad audience coverage in community services, and Health Services Journal to reach service commissioners. See below for links to what we have published so far. We will present our findings through presentations or posters at existing research forums such as the European Association of Palliative Care Congress; Clinical Research Network forums; Cicely Saunders Institute, King’s College, London; Hospice UK annual conference; National Association for Hospice at Home (NAHH) conference. See posters we have already below. Guidelines will be developed for services to help plan HAH services in the future. We also aim to engage with commissioners through the links and influence of our commissioner co-applicant, Professor Bee Wee as National Clinical Director for End of Life Care for NHS England. At the end of the project, a report and summaries for lay audiences will be produced. The draft report was submitted to NIHR on 22/3/21 and we expect it to be publicly available in early 2022. The study data will also be available to researchers and the NHS on completion in line with national and international recommendations to benefit wider society. This will also be disseminated to our research participants. In addition, dissemination of findings aimed at the public will be facilitated through links with specific organisations including the National Council for Palliative Care, Hospice UK and the National Association for Hospice at Home (NAHH). These links with National organisations may also assist with bringing the results of the research to the attention of National Policy makers. Case Study Site Newsletters: Feb 2018 May 2018 July 2018 Sept 2018 Dec 2018 Mar 2019 May 2019 June 2019 Study Publications: Hashem, F., Brigden, C., Wilson, P. and Butler, C. (2020) "Understanding what works, why and in what circumstances in Hospice at Home Services for End of Life Care: applying a realist logic of analysis to a systematically searched literature review", Palliative Medicine. Sage, pp. 16-31. doi: 10.1177/0269216319867424. Abstract | View in KAR Rees-Roberts, M., Williams, P., Hashem, F., Brigden, C., Greene, K., Gage, H., Goodwin, M., Silsbury, G., Wee, B., Barclay, S., Wilson, P. and Butler, C. (2019) "Hospice at Home services in England: a national survey", BMJ Supportive and Palliative Care. BMJ Publishing Group, pp. 1-7. doi: 10.1136/bmjspcare-2019-001818. Abstract | View in KAR Butler, C., Brigden, C., Gage, H., Williams, P., Holdsworth, L., Greene, K., Wee, W., Barclay, S. and Wilson, P. (2018) "Optimum hospice at home services for end-of-life care: protocol of a mixed-methods study employing realist evaluation", BMJ Open. BMJ. doi: 10.1136/bmjopen-2017-021192. Abstract | View in KAR Selected Conferences, posters and presentations: Abrahamson V, Butler C, Wilson P, Mikelyte R, Brigden C, Silsbury G, Goodwin M. 2021 International Conference for Realist Research, Evaluation and Synthesis. Feb 2021. Optimum Hospice at Home Services for End-of-Life care: realist evaluation and co-production. https://www.youtube.com/watch?v=fQX6-ka1VwU&feature=youtu.be Brigden C, Goodwin, M, Silsbury, G, Rees-Roberts M, Butler C, Greene K, Hayes C, Hashem F, Gage H, Williams P, Wee B, Barclay S, Wilson P, Mikelyte, R. Oct 2018. National Association for Hospice at home Annual Conference 2018. Patient and public involvement in hospice research: an example of co-production in action. PPI poster Brigden C and Silsbury G, July 2018 NIHR Research Design Service South East / INVOLVE. Co-production in the OPEL Hospice at Home Study Slides from RDS/INVOLVE UK co-production event – OPEL study project presentation Rees-Roberts M, Mikelyte R, Hayes C, Hashem F, Brigden C, Gage H, Williams P, Greene K, Wee B, Barclay S, Wilson P, Butler C. 2017. National Association for Hospice at Home annual conference 2017. Poster & presentation. Phase 1 poster Phase 1 findings A4 summary 4. Consensus Events 2020 Dates Leeds – 16 January 2020 Venue: The Met, King Street, Leeds, LS1 2HQ London – 23 January 2020 Venue: Wellcome Collection Event Spaces, 183 Euston Road, London NW1 2B Our findings were presented at two national workshops. At these workshops, we sought feedback on the implications of our findings from the audiences including members of the public, carers, HAH providers and health service commissioners. We combined all this information to assess which models of service provision are likely to lead to the best outcomes, represent best value for money and create guidelines for planning HAH services in the future. A summary of the consensus events can be found in the Phase 3 summary (pdf).