Health and Biomedical Research

2026-2030

PI: Professor Jason Hughes (University of Leicester)

Co-I's: Prof Hannah Farrimond (University of Exeter), Professor Celia Morgan (University of Exeter), Dr Michael Dunning (University of Leicester)

Funding awarded: £2.5 Million

Sponsor:  Wellcome Trust

This five-year project, led by the University of Leicester and University of Exeter, will investigate grassroots harm reduction practices among the millions of people using substances like magic mushrooms (psilocybin), LSD and MDMA to alleviate serious health problems.  

The programme comes at a time of growing international attention on how psychedelics might help people with a range of health issues. While clinical research continues to expand, many people experiencing mental health difficulties, chronic pain, neurological disorders such as cluster headaches, and other treatment-resistant conditions are using psychedelics as therapeutics outside formal healthcare settings. PATHS will examine the experiences, risks, care practices, and harm-reduction strategies that have emerged within these communities, to generate evidence that can support safer practice and inform future policy discussions. 

The project brings together five interconnected strands of research. It will trace the historical re-emergence of therapeutic psychedelic use, investigate the experiences and pathways of diverse user groups, examine how care and support are provided in extra-medical settings, and analyse the industries and services emerging around therapeutic use.

Community partners: ClusterBusters, OEV Partners, and PsyCare Welfare and Harm Reduction UK. 

2020-2025

PI: Naomi Sykes (UoE History & Archaeology).

Co-I’s: Angela Cassidy (UoE SPSPA);  Garry Marvin (Roehampton), Stuart Black (Reading), Andrew

Project postdocs: Ginny Thomas, Oli Moore (both now left UoE but still affiliated); Hannah Mortimer)

Funding awarded: £1,569,836.56

Sponsor: Wellcome Trust Collaborative Award

People all over the world feed animals every day, something which goes back thousands of years. But what happens when so many people feed so many animals for so long? What happens to the people? And the animals? And the environment? Researchers from multiple disciplines working on the project From ‘Feed the Birds’ to ‘Do Not Feed the Animals’ have been investigating these questions.  Do Not Feed the Animals? is a Wellcome Trust funded collaboration across the Universities of Reading, Exeter, and Roehampton, with National Museums Scotland; key partners include the MERL, Royal Zoological Society of Scotland, British Trust for Ornithology, Fishbourne Roman Palace, and The Powell-Cotton Museum.  The Egenis facing theme of the Animal Feeding project focused on engaged research, partnership working and anthropological-historical investigations of animal feeding, with sites of encounter including regenerative agriculture, zoo nutrition, wildlife reintroduction programmes, and pest control governance.

https://animalfeeding.org/

30 September 2016 - 30 September 2017

PI/s in Exeter: Emeritus Professor Susan Kelly

Research partners: Dr Jacqueline de Souza Gomes (Federal Fluminense University)

Funding awarded: £9,985

Sponsor(s): British Academy

About the research

The project: transfer knowledge of sociology of diagnosis; strengthen the relevant research capacity of Brazilian and British colleagues; and establish collaboration between Brazilian and British researchers. Aimed to improve early diagnosis and quality of life for people with rare and emerging diseases, and better understand social costs, impacts and consequences of diagnosis in rare and emerging diseases, especially for patients and families. We held a training workshop in the sociology of diagnosis and identify rare disease case studies in the Brazilian context.

We conducted:

• theoretical analysis of the applicability of the sociology of diagnosis to rare and emerging diseases;
• study of Brazilian national health policy/system, focusing on the National Policy of Care for People with Rare Diseases;
• study of practices, costs and consequences of diagnosis for the quality of life for people with rare diseases and people affected by the emerging disease Zika.

1 April 2016 - 30 September 2017

PI/s in Exeter: Prof Hannah Farrimond

Research partners: Professor Charles Abraham (University of Exeter Medical School)

Funding awarded: £ 43,249

Sponsor(s): Cancer Research UK

About the research

Background

The international Tobacco Control field remains mired in controversy over the exponential rise in e-cigarette use, with ongoing debates about their risk and how they should be regulated. This has created a considerable and immediate challenge for Stop Smoking Services (SSS) in the UK concerning if, and how, to reframe their services in the light of ecigarette use. Recent SSS guidance (McRobbie, 2015) has suggested taking a pragmatic approach. Some services have declared themselves ‘e-cigarette friendly’. However, little research has investigated what is meant by this or how services are approaching ecigarettes as a smoking cessation tool on the ground.

Aims

The aim of this project will be to conduct exploratory stakeholder research with smoking cessation professionals and service users of SSS (smokers who want to quit smoking, including through e-cigarettes). It will investigate how cessation professionals (advisors, managers, commissioners) see the role of Stop Smoking Services in supporting quit attempts that involve e-cigarettes. It investigated how current and potential users of cessation services (smokers, dual users, vapers, those not already engaging with services) understand e-cigarettes in relation to their smoking cessation and what they require from services. It will also provided outputs that stimulate debate and innovative thinking about the incorporation (or not) of e-cigarettes and vapers into Stop Smoking Services.

Methods

This research takes a stakeholder-driven approach, researching with two partner Stop Smoking Services in the South West of England, to undertake research with their service users and staff. The design is exploratory, using qualitative interviews (n=45) of staff, current SSS users and potential service users. The services chosen serve areas with above average smoking rates and pockets of high deprivation, with contrasting populations (inner city/rural). Stakeholders were involved in the design and dissemination stages and NHS ethics review will be required.

How the results of this research was used

The outcomes will be an informed understanding of the perceptions of SSS providers and service users, identification of needs (knowledge, resources) as well as a stakeholder-driven framework to work towards best practice in relation to smoking cessation and e-cigarettes. This research will be used to inform SSS provision nationally. This research will also speak to national and international policy debates about the role of e-cigarettes in reaching Tobacco Control goals.

1 October 2015 - 30 September 2017

PI/s in Exeter: Professor Christine Hauskeller

CI/s in Exeter:

Funding awarded: £ 139,610

Sponsor(s): European Commission (H2020)

About the research

REGUCB is a research on how international, European and national regulations on Umbilical Cord Blood (UCB) banking influence the bioeconomy of this field of biomedicine, that is the collection, banking, research and clinical application of UCB derived stem cells. The aim of REGUCB is to understand how this bioeconomy is structured, how value is produced and what are the main societal issues related.

REGUCB aims at offering a novel approach to Science and Technology Studies (STS) of current biomedicine and its economic and societal implications. It has developed a new analytical model for analyzing the production of value in UCB economy and for considering the embeddedness of UCB banking in social relations. It analyses the entanglement of value production and social relationships that links individuals, families and the general society with the related obligations, social bonds and forms of solidarity.

We have elaborated an analytical model that analyses value production in UCB banking surpassing the dominant model employed by bioethics and biomedical literature. Our model shows that the whole UCB bioeconomy cannot be enclosed in rigid distinctions (public-private, redistributive-market economy), but it works through complex economic configurations that overlap, crisscross and hybridize economic forms and institutional arrangements.

Main publications

C. Hauskeller, L. Beltrame 2016. The hybrid bioeconomy of umbilical cord blood banking: Re-examining the narrative of opposition between public and private services. BioSocieties 11(4): 415-434

C. Hauskeller and L. Beltrame 2016. Hybrid Practices in Cord Blood Banking. Rethinking the Commodification of Human Tissues in the Bioeconomy. New Genetics and Society 35(3), pp. 228-245.

L. Beltrame 2018. The bioeconomies of stem cell research, in Hauskeller, Pichl and Manzeschke, The Matrix of Stem Cell Research Revisited, Routledge, 2018

1 October 2015 - 30 September 2020

PI/s in Exeter: Professor Ginny Russell

Funding awarded: £ 509,391

Sponsor(s): Wellcome Trust

About the research

This investigation explores the role that diagnosis plays in society and in medicine, using diagnosis of autism spectrum disorder as a case study.

While some patients seek diagnosis, others resist the use of diagnostic labels and argue diagnosis can be used as a form of social control. The investigation will explore how a diagnosis is experienced by adults. What are the benefits of, and objections to the diagnostic label? What are the consequences of diagnosis? How is diagnostic categorisation achieved by clinicians? What impact does a diagnostic label have on people's preconceptions? Autism diagnosis is particularly relevant because the label is increasingly applied, the diagnosis has clear costs and benefits, and its application is frequently contested.

The investigation will document and analyse the experiences of adults in the neurodiversity movement together with those who have sought a clinical diagnosis of autism. The neurodiversity movement comprises politically mobilised adults with autism who frame neurological difference as a valuable aspect of human variation and argue against medical diagnosis claiming it pathologizes normal behaviour.

Several workshops will teach film-making skills to adults with autism. Academic outputs will include journal articles, a book and a PhD thesis.

1 April 2015 - 31 December 2015

PI/s in Exeter: Professor Ginny Russell

Funding awarded: £ 4,985

Sponsor(s): Wellcome Trust

About the research

This small-scale social epidemiology project seeks to establish evidence for a gender bias in the diagnosis of childhood Attention Deficit Hyperactivity Disorder (ADHD). It will question whether boys are more likely to receive a diagnosis than girls, given equally severe symptoms. Social epidemiologists in child psychiatry have suggested there is likely to be both real differences in ADHD symptomology between genders and additional referral / identification bias towards boys. The latter may be because ADHD is stereotyped as a 'male disorder', therefore boys are more likely to be assigned the label, whereas girls with comparable difficulties are overlooked. The methodology will be a secondary analysis of data from a birth cohort which comprises 14,000 children. Two groups, one with, and one without ADHD diagnosis will be matched on symptom severity. Gender ratios will be compared between these two groups. It is important to establish whether there is referral/ labelling bias to help clinicians recognise girls who might benefit from ADHD diagnosis. The findings will also inform on-going debates about over-diagnosis of ADHD in boys. Outputs include one journal article, a press release, and workshops with ADHD charities.

1 May 2014 - 30 October 2017

PI/s in Exeter: Emeritus Professor Susan Kelly

Research partners: Professor Angus Clarke (Cardiff University), Professor Anneke Lucassen (University of Southampton), and Dr Peter Turnpenny (Royal Devon and Exeter Hospital)

Funding awarded: £ 620,475

Sponsor(s): ESRC

About the Research

The potential for genomics to contribute to clinical care has long been recognised, accompanied by optimistic scenarios for clinical use of a patient's genetic information. New findings of clinical significance are already becoming available: for example, new information about the significance of particular genetic profiles for heart disease has recently entered NHS practice with implications for understanding individual risk of developing this disease. The knowledge base regarding genomics and health is expanding, and decreasing logistical complexities and costs of assessing genomic variation are contributing to drives to incorporate genomic findings into various areas of clinical care. A recent review of implementation projects in the US found that 'follow-up of genotyped patients', 'outreach to at-risk family members' and 'consent' were among chief challenges faced in implementation (Manolio et al, 2013). These are challenges this proposed project seeks to address, in a framework that addresses clinical implementation processes more broadly. There are a number of obstacles preventing the transfer of this new technology and understanding to patients. A key issue is that of professional responsibility: is there a moral and professional obligation for healthcare providers to re-contact former patients and families when new developments of clinical significance become available? What are professional and patient expectations concerning by whom, how, and under what circumstances patients should be re-contacted in light of new genetic information? As genetic medicine continues to be incorporated into mainstream medicine, that is, as genetic tests are increasingly ordered by medical specialities other than clinical genetics such as oncology, cardiology and paediatrics, the phenomenon of re-contacting is becoming both more likely and more complex. Different healthcare professionals may be responsible for communicating genetic test results to patients and families and to re-contact them when information becomes available such as improved diagnosis or therapies. Important psychosocial aspects are involved in re-contacting; new genetic information can have significant and complex repercussions on patients' lives in relation to reproductive decisions, lifestyle choices, employment and wellbeing. Re-contacting can potentially cause anxiety, concerns over health and the future, and may be viewed as an intrusion of patients' and families' privacy. Research exploring re-contacting is limited, even while it is recognised as being of increasing importance in healthcare. This project will examine re-contacting in current clinical practice in the NHS; legal contexts and relevant guidelines; ethical issues; and expectations of patients and healthcare professionals. We are aware of no empirical work that is this comprehensive, that has addressed these specific aspects, nor that has employed a framework of potentially conflicting professional cultures and expectations in this context. There is limited empirical knowledge and evidence about professionals' and patients' perspectives on re-contacting and there is an urgent need for more research on the capacity of the healthcare system to record and respond to patient preferences for re-contacting in an effective, equitable, ethically sound, and acceptable way. The outcomes of this project will extend our understanding of the implications of rapid innovation in genetic information for patients and families. It will also provide evidence-based recommendations regarding communication between healthcare professionals and patients, potentially leading to the development of an informed ethical and professional framework regarding re-contacting. The project team has significant relevant expertise, including clinical paediatric, cancer and cardiac genetics and knowledge of how these specialties are incorporating genetic information; and in sociology of medicine, technology and genetics.

1 April 2013 - 30 September 2014

PI/s in Exeter: Professor Ginny Russell

CI/s in Exeter:

Funding awarded: £ 147,104

Sponsor(s): ESRC

About the research

This project was funded by the ESRC under its Secondary Data Analysis Initiative, and ran from 2013-2014.

The number of children diagnosed with childhood developmental disorders, including autism has risen sharply over the last 20 years. The project’s primary aim was to examine whether the proportion of children with the symptoms that underpin autism increased over a ten year period. 

The findings from this analysis are discussed in an accompanying podcast and video.

The project also assessed the association between ADHD and socio-economic disadvantage. This led to a PhD studentship for Abby Russell.

Finally, the study identified children with reading difficulties (characteristic of dyslexia), analysing which child and family characteristics predicted dyslexia, and assessing how frequently children with reading difficulties are given either an autism or ADHD diagnosis.

Associated Publications

Russell, G., Collishaw, S., Golding, J, Kelly, S &  Ford, T. (2015)  Changes in diagnosis rates and behavioural traits of autism spectrum disorder over time: a cross-cohort comparison. British Journal of Psychiatry –Open 2, 110–115.

Russell, A., Ford, T. & Russell, G. (2015) Socioeconomic associations with ADHD: findings from a mediation analysis Plos-one. June 1, 2015 DOI: 10.1371/journal.pone.0128248

Russell, G. Ryder, D.  Norwich, B. & Ford, T.  (2015) Behavioural difficulties that co-occur with specific word reading difficulties: a UK population- based cohort study. Dyslexia.

Russell, G., Ford, T., Rosenberg, R. & Kelly, S. (2014) The association of attention deficit hyperactivity disorder with socio-economic disadvantage: Alternative explanations and evidence. Journal of Child Psychology and Psychiatry. 55(5) 436-445: DOI: 10.1111/jcpp.12170

Russell, G., Ukoumunne, O., Ryder, D., Golding, J, & Norwich, B. (under revision) Predictors of word reading ability in seven year old children: A UK cohort study.  Journal of Research in Reading.

Other outputs

Magazine articles

An accurate diagnosis? Nasen: Special. (July 2015) National Association of Special Educational Needs Coordinators, p24-25.

Across the Spectrum. Britain in 2015. ESRC Publications. p230-38.

Presentations

Recent trends in symptoms and diagnosis of autism: a cross cohort comparison. Society for Research in Child Development, Philadelphia USA, March 2015

Is there an epidemic of autism in the UK?  British Association for Childhood Disability annual Meeting, January, 2015

Time Trends in diagnosis rates and symptom levels of Autism Spectrum Disorder. Royal College of Psychiatrists, Annual Meeting, Cardiff, UK, Sept 2014

UK cohorts in social science research: Comparing data from two longitudinal birth cohorts. Launch of Q-Step Centre , School of Social Science, University of Exeter,  March 2014.

The development of dyslexia: Findings from the Millennium Cohort, UK. International Conference on Language and Communication, Bangkok, Thailand, Dec 2013.

Shifts in diagnosis and prevalence of autism. Autism Today: Winter Meeting. International Conference Centre, Manchester, Nov 2013.

Project team

Dr Ginny Russell is currently a Senior Research Fellow at the medical school and at the Egenis research centre in School of Social Science. Her research encompasses developmental psychology, health services research and sociology. She is the primary contact for questions relating to this project.

Professor Tamsin Ford is an academic child and adolescent psychiatrist. She leads a group of researchers whose work focuses on the effectiveness of services and interventions to support mental health and well-being of children and young people.

Dr Stephan Collishaw is a developmental psychologist at the University of Cardiff. 

Professor Susan Kelly is a medical sociologist. She is the leader of the Health Technology and Society research group.

Dr Obioha Ukoumunne is a senior medical statistician.

Professor Jean Golding OBE is Professor Emeritus of Paediatric Epidemiology at the University of Bristol.

1 October 2012 - 30 September 2014

PI/s in Exeter: Emeritus Professor Susan Kelly

Research partners: UEA, University of Cambridge, University of York, Victoria University of Wellington

Funding awarded: £ 1,620 (total funding of £ 18,034)

Sponsor(s): ESRC

About the Research

It is only very recently that the sociology of diagnosis has finally begun to take shape and garner interest. This project is a series of seminars investigating what a diagnosis might mean for patients, medical professionals, and policy makers alike, and how public understanding and policy making will be changed by new technologies. The overall aim of the seminar series is to further develop the sociology of diagnosis, to elicit debate around the practices, costs and consequences of diagnosis, and to explore how health care institutions, professionals, managers, practitioners, patients and carers shape and respond to the shifting nature of diagnosis.

1 May 2012 - 31 May 2012

PI/s in Exeter: Emeritus Professor Susan Kelly

Funding awarded: £ 1,900

Sponsor(s): Foundation for the Sociology of Health and Illness

About the research

Novel technologies, including those based on post-human genome project developments such as whole genome sequencing, are raising the promise of earlier, faster and more detailed diagnostic tests than ever before. While scholars in the sociology of health and illness have begun to address the ELSI's raised as such technologies move towards clinical application, the likely impact of new diagnostic regimes on existing practices and processes of post-diagnostic intervention remains a relatively neglected area both for social scientists and within healthcare practice and management itself. If changing diagnostic methodologies reframe the boundaries and meaning of disease categories how does this affect the meaning and choice of available interventions, and the subsequent trajectories of disease management, for patients and physicians? Do new diagnostic technologies affect existing organisational practices and if so how and with what outcomes? This one day symposium provides a platform to bring together scholars working in the sociology of health and illness to address these and other key issues and develop a more detailed research agenda for further work in this area. The symposium will consist of a series of presentations by key speakers in the morning session, followed by an afternoon workshop session intended to maximise the opportunities for productive discussion and knowledge exchange.

1 November 2011 - 31 October 2017

PI/s in Exeter: Professor Christine Hauskeller

Funding awarded: £ 54,983

Sponsor(s): European Commission (EC)

About the Research

Toward Harmonised Ethical Standards is a sociological and ethical research project. We study how a multi-centre stem cell clinical trial passes through the various regulatory steps required before patient recruitment can start. As work package 7 (WP) the research is an integral part of the clinical trial BAMI funded by the European Commission. The clinical study aims to standardise the treatment and care of patients after acute and severe myocardial infarction, trialling whether the injection of stem cells from the patients own bone marrow reliably leads to improved heart function. BAMI is the first Phase 3 multi-national trial that had to use a set of amended and new EU regulatory instruments.

The ethical and sociological study accompanies BAMI from the planning of the funding application for the trial to the completion of patient recruitment, engaging with the clinical staff in 10 countries. All the events encountered on the route to and later for maintaining approval are recorded and followed up with semi-structured interviews with BAMI clinical staff and project managers. We also use mini-surveys and analyse documentary evidence. The research intends to foster better exchange within BAMI and to report on the logistical obstacles multi-national European regenerative medicine clinical trials face following ongoing and recent harmonisation of relevant regulations.

Outputs include academic articles and a report containing recommendations for the harmonisation of clinical trial practice in the field of cell therapy to the EU Commission.

Publications:

Christine Hauskeller and Nicole Baur (2017) 'Standards, Harmonisation and Cultural Differences: Experiences from a European Stem Cell Clinical Trial', Special Issue edited by A. Rosemann, Science as Culture, in press, 2017.

Christine Hauskeller (2017) 'What to expect when preparing a multi-national European stem cell clinical trial?', in Regenerative Medicine (IF 2.602), entitled: 'Regenerative Medicine in Society: Interdisciplinary Perspectives', in press, expected September 2017.

Christine Hauskeller and Nicole Baur (2017) 'Travelling cells - Harmonised European Regulation and the BAMI stem cell trial', in P. Van Pham and A. Rosemann, in press, expected May 2017.

Anthony Mathur, F Fernandez-Aviles, S Dimmeler,

C Hauskeller, et. al. 'The consensus of the Task Force of the European Society of Cardiology concerning the clinical investigation of the use of autologous adult stem cells for the treatment of acute myocardial infarction and heart failure: update 2016', in: European Heart Journal (2017)

1 August 2011 - 30 September 2012

PI/s in Exeter: Prof Hannah Farrimond

Funding awarded: £ 4,395

Sponsor(s): Richard Benjamin Trust

About the Research

Current clinical recommendations propose using family history to identify and intervene to prevent Type 2 diabetes. However, little research has studied how lay people understand or respond to familial diabetes risk. This project takes a social psychological approach using social representations theory which emphasises the group and identity dimensions of thought and behaviour. Semi-structured interviews will be conducted with 'at risk' individuals and their first-degree relatives. Thematic analysis will identify within-group (intra-family) and between-group (inter-family) differences in representations. The study will produce a theoretically grounded psychological 'underpinning' for the design of interventions with 'at risk' families in the future.

Research Objectives

• To investigate the social representations of diabetes, inheritance and genetics amongst family members with familial diabetes risk
• To explore the utility of social representations theory in explaining identity positioning within and between self-defining sub-groups (e.g. families)
• To feedback findings into clinical recommendations for family history interventions with 'at risk' families

1 October 2010 - 30 November 2012

PI/s in Exeter: Emeritus Professor Susan Kelly

Research partners: Professor Sally Wyatt (VKS, Maastricht, Netherlands)

Funding awarded: £ 63,625

Sponsor(s): ESRC

About the research

Examining on-line representation of psychiatric genetics, scientific controversies and test development, and user community responses. We have made numerous conference presentations from our research under this project, and have two publications accepted and several in process.