Publications
24 results found
Piggin M, Alvarado Cruz L, Hargreaves D, et al., 2024, Online public involvement session on early life respiratory infections and their impact on lung age
Piggin M, Johnson H, Asantewa-Sechereh N, et al., 2023, Insight Report: Online public involvement session on proposed cardiovascular research programmes
A group of researchers across Imperial College London (some of whom are also part of the Imperial Biomedical Research Centre (BRC)) are applying for £5 million funding over 5 years from the British Heart Foundation (BHF) to fund a BHF Centre for Research Excellence at Imperial to support research on various aspects of cardiovascular medicine. The four research themes the funding proposal will cover are as follows: 1. Societal and Environmental Factors 2. Learning from Heart Patients 3. Vascular Ageing (Blood vessels)4. Remote (at home) personal monitoring
Adan N, Piggin M, 2023, Community health information session on bowel and prostate cancer screening awareness report - 07.11.22
Adan N, Piggin M, 2023, Diet and nutrition event report
The following report provides an overview of the Diet and Nutrition Event held for the Somali community. The event aimed to raise awareness about healthy eating habits, promote nutrition education, and address specific dietary needs within the Somali community.
Adan N, Piggin M, 2023, Diet and Nutrition Event Report
The following report provides an overview of the Diet and Nutrition Event held for the Somali community. The event aimed to raise awareness about healthy eating habits, promote nutrition education, and address specific dietary needs within the Somali community.
Piggin M, Smith E, Mankone P, et al., 2022, The role of public involvement in the design of the first SARS-CoV-2 human challenge study during an evolving pandemic, Epidemics: the journal of infectious disease dynamics, Vol: 41, Pages: 1-6, ISSN: 1755-4365
High quality health care research must involve patients and the public. This ensures research is important, relevant and acceptable to those it is designed to benefit. The world’s first human challenge study with SARS-CoV-2 undertook detailed public involvement to inform study design despite the urgency to review and establish the study. The work was integral to the UK Research Ethics Committee review and approval of the study. Discussion with individuals from ethnic minorities within the UK population supported decision-making around the study exclusion criteria. Public review of study materials for consent processes led to the addition of new information, comparisons and visual aids to help volunteers consider the practicalities and risks involved in participating. A discussion exploring the acceptability of a human challenge study with SARS-CoV-2 taking place in the UK, given the current context of the pandemic, identified overall support for the study. Public concern for the wellbeing of trial participants, as a consequence of isolation, was identified. We outline our approach to public involvement and its impact on study design.
Piggin M, Johnson H, Baker K, 2022, Science of Digestion Event Report: 26 April 2022, Science of Digestion Event Report: 26 April 2022, https://www.imperial.ac.uk/patient-experience-research-centre/
A report detailing a community event held on 26 April 2022 in collaboration with Guts UK charity to present gut health research to the North West London community and understand their gut health priorities and research questions.
Piggin M, Perry R, Balarajah S, 2022, Insight Report: Online public involvement session on the views of patients living with Inflammatory Bowel Disease (IBD) in relation to a Multiomic phenotyping of IBD., Insight Report: Online public involvement session on the views of patients living with Inflammatory Bowel Disease (IBD) in relation to a Multiomic phenotyping of IBD., https://www.imperial.ac.uk/patient-experience-research-centre/
A report summarising the insights of patients living with IBD about an Imperial BRC research project involving Multiomic phenotyping of IBD
Piggin M, Johnson H, Papadimitriou D, et al., 2022, Insight Report: Digital health online public involvement session on using artificial intelligence to improve health and care in North West London, Insight Report: Digital health online public involvement session on using artificial intelligence to improve health and care in North West London
Summary report on the views of members of the public on using Artificial intelligence as part ofbuilding the digital healthcare programme of research in North West London.
Piggin M, Johnson H, Baker K, et al., 2022, Insight Report: “Innovative, automated use of real-world healthcare data to improve outcomes for patients with ovarian cancer” project online public involvement session, Insight Report: “Innovative, automated use of real-world healthcare data to improve outcomes for patients with ovarian cancer” project online public involvement session
A summary of the insights gathered from a public involvement discussion involving patients and cares with lived experience of ovarian cancer and their views on a health data project “Innovative, automated use of real-world healthcare data to improve outcomes for patients with ovarian cancer”
Barker C, Collet K, Gbesemete D, et al., 2022, Public attitudes to a human challenge study with SARS-CoV-2: a mixed-methods study., Wellcome Open Res, Vol: 7, ISSN: 2398-502X
Background: Human challenge studies involve the deliberate exposure of healthy volunteers to an infectious micro-organism in a highly controlled and monitored way. They are used to understand infectious diseases and have contributed to the development of vaccines. In early 2020, the UK started exploring the feasibility of establishing a human challenge study with SARS-CoV-2. Given the significant public interest and the complexity of the potential risks and benefits, it is vital that public views are considered in the design and approval of any such study and that investigators and ethics boards remain accountable to the public. Methods: Mixed methods study comprising online surveys conducted with 2,441 UK adults and in-depth virtual focus groups with 57 UK adults during October 2020 to explore the public's attitudes to a human challenge study with SARS-CoV-2 taking place in the UK. Results: There was overall agreement across the surveys and focus groups that a human challenge study with SARS-CoV-2 should take place in the UK. Transparency of information, trust and the necessity to provide clear information on potential risks to study human challenge study participants were important. The perceived risks of taking part included the risk of developing long-term effects from COVID, impact on personal commitments and mental health implications of isolation. There were a number of practical realities to taking part that would influence a volunteer's ability to participate (e.g. Wi-Fi, access to exercise, outside space and work, family and pet commitments). Conclusions: The results identified practical considerations for teams designing human challenge studies. Recommendations were grouped: 1) messaging to potential study participants, 2) review of the protocol and organisation of the study, and 3) more broadly, making the study more inclusive and relevant. This study highlights the value of public consultation in research, particularly in fields attracting public intere
Johnson H, Piggin M, Abbara A, et al., 2021, Insight Report: Metabolic medicine and endocrinology online public involvement session on weight and fertility
Summary report on the views of members of the public on the proposed research on weight and fertility by the Metabolic Medicine and Endocrinology Theme of the Imperial Biomedical Research Centre.
Johnson H, Piggin M, McKibben S, et al., 2021, Insight Report: Respiratory medicine research prioritisation online survey
Insight report summarising the findings from an online survey aiming to help shape respiratory medicine research priorities in North West London.
Johnson H, Piggin M, Maslen L, et al., 2021, Insight Report: Online public involvement session on the use of molecular phenomics to improve health and care
Johnson H, Piggin M, Cunnington A, 2021, Online survey insight report: Involving children, young people, and families in our research, Online survey insight report: Involving children, young people, and families in our research
Insight report summarising the findings from an online public involvement survey to help shape child, young persons, and family research in North West London.
Johnson H, Godsland I, Oliver N, et al., 2021, Insight Report: Online public involvement session on the use of the Wynn Database for Metabolic Research, Insight Report: Online public involvement session on the use of the Wynn Database for Metabolic Research
Piggin M, Johnson H, Shovlin C, et al., 2021, Insight report: Online public involvement session on research exploring social, genetic, and environmental determinants of health
Piggin M, Johnson H, Papadimitriou D, et al., 2021, Insight Report: Digital health online public involvement session on using real world evidence to improve health and care in North West London, Insight Report: Digital health online public involvement session on using real world evidence to improve health and care in North West London
Summary report on the views of members of the public on real world evidence studies undertaken aspart of building the digital healthcare programme of research in North West London
Piggin M, Johnson H, Jayacodi S, et al., 2021, Insight report: public involvement to inform the NIHR Imperial Biomedical Research Centre Reapplication 2022 to 2027, Public Involvement to inform the NIHR Imperial Biomedical Research Centre Reapplication 2022 to 2027
Piggin M, Johnson H, Papadimitriou D, et al., 2021, Insight Report: Digital health online public involvement session on building our digital healthcare programme in North West London, Insight Report: Digital health online public involvement session on building our digital healthcare programme in North West London
Summary report on the views of members of the public on building the digital healthcare programme of research in North West London.
Johnson H, Piggin M, Manousou P, et al., 2021, Insight Report: Metabolic medicine and endocrinology online public involvement session on non-alcoholic fatty liver disease
Close J, Bornemann J, Piggin M, et al., 2021, Co-design of guidance for patient and public involvement in psychedelic research, Frontiers in Psychiatry, Vol: 12, Pages: 1-10, ISSN: 1664-0640
Within the context of scientific research, patient and public involvement (PPI) is defined as research performed ‘with’ or ‘by’patients and members of the public, rather than ‘to’, ‘about’ or ‘for’ them. When carried out systematically and thoughtfully, PPIhas the potential to strengthen the quality and impact of research by fostering accountability, transparency, and relevance. Thereexist numerous guidelines, frameworks and tools for supporting PPI, however, these do not account for the unique challenges facedin psychedelic research. This paper describes the co-design of guidance intended to help build, evaluate and improve PPI inpsychedelic research. A steering group was formed to design and run a co-design workshop alongside public collaborators. Insightsfrom this workshop were analysed and refined into a comprehensive and readily usable guide for planning PPI specific to the fieldof psychedelic research. Core values emerging from the process focused on the essential importance of trust, learning, purposeand inclusivity. It is hoped that this guidance will be a starting point for incorporating PPI in future psychedelic research, so that itcan grow and adapt as this burgeoning field of research progresses.
Atchison C, Pristerà P, Cooper E, et al., 2020, Usability and acceptability of home-based self-testing for Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) antibodies for population surveillance, Clinical Infectious Diseases, Vol: 2020, Pages: 1-10, ISSN: 1058-4838
BACKGROUND: This study assesses acceptability and usability of home-based self-testing for SARS-CoV-2 antibodies using lateral flow immunoassays (LFIA). METHODS: We carried out public involvement and pilot testing in 315 volunteers to improve usability. Feedback was obtained through online discussions, questionnaires, observations and interviews of people who tried the test at home. This informed the design of a nationally representative survey of adults in England using two LFIAs (LFIA1 and LFIA2) which were sent to 10,600 and 3,800 participants, respectively, who provided further feedback. RESULTS: Public involvement and pilot testing showed high levels of acceptability, but limitations with the usability of kits. Most people reported completing the test; however, they identified difficulties with practical aspects of the kit, particularly the lancet and pipette, a need for clearer instructions and more guidance on interpretation of results. In the national study, 99.3% (8,693/8,754) of LFIA1 and 98.4% (2,911/2,957) of LFIA2 respondents attempted the test and 97.5% and 97.8% of respondents completed it, respectively. Most found the instructions easy to understand, but some reported difficulties using the pipette (LFIA1: 17.7%) and applying the blood drop to the cassette (LFIA2: 31.3%). Most respondents obtained a valid result (LFIA1: 91.5%; LFIA2: 94.4%). Overall there was substantial concordance between participant and clinician interpreted results (kappa: LFIA1 0.72; LFIA2 0.89). CONCLUSION: Impactful public involvement is feasible in a rapid response setting. Home self-testing with LFIAs can be used with a high degree of acceptability and usability by adults, making them a good option for use in seroprevalence surveys.
Pristera P, Papageorgiou V, Kaur M, et al., 2020, Report 14: Online community involvement in COVID-19 research & outbreak response: early insights from a UK perspective
The Patient Experience Research Centre (PERC) at Imperial College London is developing research to explore and understand people’s views about, experiences of and behavioural responses to the outbreak in the UK and elsewhere. To guide that effort and to help inform COVID-19 research and responses more broadly - for example in mathematical modelling and policy - PERC launched an online community involvement initiative that sought rapid, early insight from members of the public and aimed to establish a network for ongoing community engagement.Priority areas for COVID-19 research Vaccine development was considered the most urgent research priority for many respondents. Social studies exploring the public’s experiences, risk perceptions and behaviours during this outbreak were necessary and important according to 95% of the respondents. Such research could:Improve the way the current outbreak response is planned and implemented;Improve the way information and guidance is provided to and understood by the public;Optimise the support provided to communities and vulnerable groups; andImprove future outbreak preparedness.Other recommended areas of research included:Understanding the role of the media in influencing how people react and respond;Furthering our basic understanding of the virus – how it spreads, who it affects the most and why, and whether people achieve and maintain immunity after being infected;Critiquing the UK’s response to the pandemic against that of other countries; andEnsuring lessons can be learnt from this outbreak to better equip us for future outbreaks, and public health emergencies in general.Key unmet needs amongst communities The main challenges described by respondents were ineffective communication, including access to information and information overload; and conflicting guidance and misinformation. Respondents’ described feelings of concern, confusion and, in some cases, panic as a result of these communication a
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