Review
Gastroenterology & Hepatology
Sailish Honap, Anne Buisson, Silvio Danese, Laurent Beaugerie, Laurent Peyrin-Biroulet
Summary: Participatory research, also known as patient and public involvement, is a collaborative approach that improves research outcomes by involving patients in the research process. It enhances the quality and relevance of research and satisfies the ethical argument for patient inclusion. This approach is now widely accepted as best practice.
JOURNAL OF CROHNS & COLITIS
(2023)
Article
Urban Studies
Anastasiia Galaktionova
Summary: This paper examines the relationship between citizens' city perception and their involvement in city improvement, based on the statistically significant relationship between the distribution of daily places perceptions and proposals for city improvement. It was found that citizens' emotions are closely related to these proposals, with positive emotions correlating with proposals to keep places intact and negative emotions correlating with proposals to improve places. However, both emotions and public proposals are found to be scarcely distributed in space, which poses a major limitation to public participation in urban planning.
Article
Public, Environmental & Occupational Health
Meghan Gilfoyle, Anne MacFarlane, Ailish Hannigan, Vikram Niranjan, Zoe Hughes, Jon Salsberg
Summary: This paper examines the history of Public and Patient Involvement (PPI) in healthcare and research across global jurisdictions, highlighting key themes and considerations. It advocates for a culture shift in Ireland by combining participatory health research (PHR) with policy drivers, and emphasizes the importance of capacity building. The authors call for Irish researchers and funders to consider the rich literature of PHR, the origins of different participatory health research methods, the leadership roles of community/patient groups in health research, and the value of co-learning and partnership synergy.
FRONTIERS IN PUBLIC HEALTH
(2022)
Article
Clinical Neurology
Vanessa L. Merker, Andres J. Lessing, Irene Moss, Maureen Hussey, Beverly Oberlander, Traceann Rose, Raquel Thalheimer, Tracy Wirtanen, Pamela L. Wolters, Andrea M. Gross, Scott R. Plotkin, REiNS Int Collaboration
Summary: The survey of REiNS members showed that providing sufficient opportunities for patient representatives to engage in research tasks and fostering a respectful, inclusive atmosphere were key to their satisfaction and impact. Patient representatives were perceived to improve the organization's research by directly contributing to research tasks and indirectly influencing other stakeholders, leading to the selection of more meaningful and relevant clinical trial outcomes. Challenges to patient engagement included scheduling difficulties and concerns about the level of scientific knowledge needed to effectively engage.
Article
Clinical Neurology
Vanessa L. Merker, Andres J. Lessing, Irene Moss, Maureen Hussey, Beverly Oberlander, Traceann Rose, Raquel Thalheimer, Tracy Wirtanen, Pamela L. Wolters, Andrea M. Gross, Scott R. Plotkin
Summary: Involving patient representatives in REiNS improved the perceived quality of neurofibromatosis clinical trial outcome measures. Providing sufficient opportunities for engagement, fostering an inclusive atmosphere, and navigating time pressures are crucial for effective patient engagement.
Review
Medicine, General & Internal
Francesco Perrone, Raimondo Di Liello, Piera Gargiulo, Laura Arenare, Lorenzo Guizzaro, Paolo Chiodini, Ciro Gallo, Maria Carmela Piccirillo
Summary: A wave of new treatments for solid tumours brings about uncertainty regarding the optimal treatment plan. Patient-journey study (PJS) proposes a model to track patients across treatment lines and generate comparative effectiveness data, aiming to optimize patient treatment in clinical practice.
Article
Medicine, General & Internal
Christel Nielsen, Kristofer Andreasson, H. Olsson, Malin Engfeldt, Anna Joud
Summary: The Swedish Tattoo and Body Modifications Cohort (TABOO) cohort was established to study the role of tattoos and body modifications as risk factors for adverse health outcomes. It is the first population-based cohort with detailed exposure assessment of various types of body modifications. Currently, the cohort is being used to investigate the incidence of health complaints after tattooing and the risk of immune-mediated diseases.
Article
Oncology
Paola Mosconi, Cinzia Colombo, Pasquale Paletta, Laura Gangeri, Chiara Pellegrini, Elena Garralda, Rosalba Miceli, Cinzia Brunelli, CEE DART Consortium
Summary: A survey conducted in seven European clinical and non-clinical centers reveals that most cancer researchers are aware of the concept of Patient and Public Involvement (PPI), although only slightly over half of them have any experience in this area. The level of PPI knowledge is found to increase with career seniority, and early-career professionals show the highest interest in training courses. The majority of respondents prefer practical tools in PPI training.
Review
Urology & Nephrology
Allison Tong, Nicole Scholes-Robertson, Carmel Hawley, Andrea K. Viecelli, Simon A. Carter, Adeera Levin, Brenda R. Hemmelgarn, Tess Harris, Jonathan C. Craig
Summary: Patient involvement in clinical trial design is crucial for improving participant recruitment and retention, increasing the uptake of interventions, and enhancing the impact of findings on patient outcomes. However, in nephrology, patients have limited involvement in trial design, which can compromise the relevance and reliability of trial evidence.
NATURE REVIEWS NEPHROLOGY
(2022)
Article
Medicine, General & Internal
Andrew Jull, Natalie Walker
Summary: Between 1999 and 2017, almost 90% of HRC-funded trials were registered and a similar proportion of completed trials were published, with no difference in time to publication based on trial result. However, only a small percentage of trials were published within the 2-year timeframe set by the WHO.
Article
Medicine, General & Internal
Ashley Kieran Clift, Julia Hippisley-Cox, David Dodwell, Simon Lord, Mike Brady, Stavros Petrou, Gary S. Collins
Summary: This study aims to develop breast cancer risk prediction models and evaluate their performance. Using data from QResearch, different modeling approaches will be used to predict the risk of developing breast cancer within the next 10 years, the combined risk of developing and dying from breast cancer within 10 years, and the risk of breast cancer mortality within 10 years of diagnosis. Performance and transferability of the models will be assessed through internal-external cross-validation and external validation. The results of this study will provide guidance for risk-reducing interventions and screening strategies for high-risk women.
Review
Biochemistry & Molecular Biology
Olalekan Lee Aiyegbusi, Christel McMullan, Sarah Hughes, Grace Turner, Anuradhaa Subramanian, Richard Hotham, Elin Haf Davies, Chris K. Frost, Yvonne J. Alder, Lisa Agyen, Lewis Buckland, Jennifer Camaradou, Amy V. Chong, Felicity J. Jeyes, Sumita M. Kumar, Karen Matthews, Patricia Moore, Jane Ormerod, Gary Price, Michael Saint-Cricq, David Stanton, Anita Walker, Shamil Haroon, Alastair C. Denniston, Melanie Calvert, TLC Study Grp, Kirsty Brown, Joht Singh Chandan, Georgios V. Gkoutos, Louise J. Jackson, Janet M. Lord, Tom Marshall, Steven Marwaha, Puja Myles, Krishnarajah Nirantharakumar, Samantha Cruz Rivera, Elizabeth Sapey, Nikita Simms-Williams, Tim Williams, David C. Wraith
Summary: The authors present a checklist for patient and public involvement and engagement in future research based on the lessons learned from the TLC study. Patient and public involvement can offer valuable insights into the experiences of those affected by a disease. Inclusive collaboration between patients, the public, and researchers can lead to productive relationships and address patient needs in health research.
Article
Medicine, General & Internal
Sofyan Jankowski, Isabelle Boutron, Mike Clarke
Summary: This study evaluated the impact on readers' interpretation of the results reported in an abstract for a hypothetical clinical trial with statistically significant results, spin, both, or neither. The findings suggest that statistical significance influenced readers' perception regardless of spin level, while spin influenced readers' perception mainly when the results were not statistically significant.
Article
Health Care Sciences & Services
Jacqueline Rix, Jonathan Branney, Alexander C. Breen, Philip Sewell, Sharon Docherty
Summary: Involving various stakeholder groups is crucial in developing research materials, as each group makes a unique contribution. Through feedback, readability and understanding of trial materials were improved, contributing to the informed consent process.
HEALTH EXPECTATIONS
(2021)
Article
Biochemistry & Molecular Biology
Daniel M. Goldenholz, Haoqi Sun, Wolfgang Ganglberger, M. Brandon Westover
Summary: Before integrating new machine learning into clinical practice, validation studies and sample size estimates are needed. Unlike hypothesis testing studies, the goal of validating predictive models is to obtain estimates of model performance. SSAML is an open-source method that provides a formal expectation of precision and accuracy for clinical validation studies of machine learning models.
Article
Health Care Sciences & Services
Edel Tierney, Rachel McEvoy, Ailish Hannigan, Anne E. MacFarlane
HEALTH EXPECTATIONS
(2018)
Article
Law
Mary-Elizabeth Tumelty, Kaitlyn Cinnamond, Ailish Hannigan, Sean Tierney, Eimear Spain
Summary: Defensive medicine refers to behaviors by physicians to avoid medical negligence litigation and complaints, which can lead to lower patient care standards and increased healthcare costs. This study examines the existence of defensive practices among surgeons in Ireland and explores the impact of civil and regulatory responses on patient safety incidents. The tension between the current medico-legal environment and medical practice has implications for quality and safety.
EUROPEAN JOURNAL OF HEALTH LAW
(2021)
Article
Anesthesiology
E. Ryan, A. Hannigan, H. Grol-Prokopczyk, P. May, H. Purtill
Summary: This study highlights the importance of addressing bias in pain estimation among older adults. The impact of these biases on pain estimates for European older adults has been understudied. Additionally, the study identified sociodemographic disparities in pain among older adults in Ireland. Therefore, there is a need for policies that address sociodemographic disparities in older adult pain levels.
EUROPEAN JOURNAL OF PAIN
(2023)
Article
Public, Environmental & Occupational Health
Ailish Hannigan, Nazmy Villarroel, Maria Roura, Joseph LeMaster, Alphonse Basogomba, Colette Bradley, Anne MacFarlane
INTERNATIONAL JOURNAL FOR EQUITY IN HEALTH
(2020)
Article
Health Care Sciences & Services
Louise Annemoon Jonker, Madelon T. Heijltjes, Judith A. C. Rietjens, Agnes van der Heide, Geeske Hendriksen, Johannes J. M. van Delden, Ghislaine J. M. W. van Thiel
Summary: This study explores the perceptions and experiences of patients and relatives regarding Continuous Deep Sedation (CDS). The findings suggest that patients and relatives consider CDS as a regular palliative care option and prioritize avoiding suffering at the end of life. They also claim a substantial say in the decision-making process.
HEALTH EXPECTATIONS
(2024)
