Article
Urology & Nephrology
Talia Gutman, Ayano Kelly, Nicole Scholes-Robertson, Jonathan C. Craig, Shilpanjali Jesudason, Allison Tong
Summary: This study aims to describe the experiences and perspectives of patients and caregivers in their previous involvement in research. It found that patients faced challenges such as the burden of illness, stigma, lack of support and awareness. Building trust and recognizing the expertise and value of patients can better support their involvement in research.
CLINICAL JOURNAL OF THE AMERICAN SOCIETY OF NEPHROLOGY
(2022)
Review
Health Care Sciences & Services
Padraig Carroll, Adrian Dervan, Anthony Maher, Ciaran McCarthy, Ian Woods, Rachel Kavanagh, Cliff Beirne, Geoff Harte, Donal O'Flynn, Cian O'Connor, Tara McGuire, Liam M. Leahy, Javier Gutierrez Gonzalez, Martyna Stasiewicz, Jack Maughan, Pedro Jose Gouveia, Paul J. Murphy, John Quinlan, Sarah Casey, Alice Holton, Eimear Smith, Frank Moriarty, Fergal J. O'Brien, Michelle Flood
Summary: This scoping review aimed to identify and develop principles for Patient and Public Involvement (PPI) in preclinical research. Few examples of empirical PPI activity in preclinical research were found, but they may support future use of PPI in this context.
HEALTH EXPECTATIONS
(2022)
Review
Public, Environmental & Occupational Health
Rebecca J. Bergin, Camille E. Short, Nikki Davis, Julie Marker, Maria Teresa Dawson, Shakira Milton, Mairead McNamara, Paige Druce, Kristi Milley, Napin Karnchanachari, Gemma Skaczkowski
Summary: Patient and public involvement in cancer prevention, screening, and early detection research can lead to high-quality and relevant studies that better cater to the needs of patients and their families. This systematic review examined the nature and impact of such involvement and found that while there are advantages, there is room for improvement in encouraging participation throughout the research process and evaluating and reporting its impact.
PREVENTIVE MEDICINE
(2023)
Review
Food Science & Technology
Greta Castellini, Guendalina Graffigna
Summary: This systematic review provides an overview of currently available involvement in food measures, categorizing them into five psychological domains. Results indicate that the scientific quality of most instruments is doubtful or inadequate. Future research should focus on developing a comprehensive scale with a shared definition of FI.
FOOD QUALITY AND PREFERENCE
(2022)
Review
Health Care Sciences & Services
Edwin Cohen, Bill Byrom, Anja Becher, Magnus Jornten-Karlsson, Andrew K. Mackenzie
Summary: This systematic review evaluates the effectiveness of electronic consent (eConsent) in enhancing patient understanding, engagement, and acceptability of clinical trial information. The results show that compared to traditional paper-based consent, eConsent allows patients to better understand trial information, engage more actively, and rate the consent process as more acceptable and usable.
JOURNAL OF MEDICAL INTERNET RESEARCH
(2023)
Review
Health Care Sciences & Services
Edwin Cohen, Bill Byrom, Anja Becher, Magnus Jornten-Karlsson, Andrew K. Mackenzie
Summary: This systematic review examines the effectiveness of electronic consent (eConsent) compared to traditional paper-based consent. The findings show that patients using eConsent have a better understanding of study information, greater engagement with content, and find the consenting process more acceptable and usable. eConsent has the potential to address data quality concerns related to flawed consenting processes.
JOURNAL OF MEDICAL INTERNET RESEARCH
(2023)
Article
Immunology
Nicole D. Derksen-Lazet, Corline E. J. Parmentier, Joanne G. Wildenbeest, Louis J. Bont
Summary: RSV causes a significant disease burden among vulnerable populations. However, research often lacks active patient involvement, leading to limited dissemination of knowledge gained. To improve patient involvement and awareness of RSV, the RSV Patient Advisory Board has been established within the Respiratory Syncytial Virus Consortium in Europe.
JOURNAL OF INFECTIOUS DISEASES
(2022)
Article
Health Care Sciences & Services
Toril B. Rossvoll, Jan H. Rosenvinge, Kristin Liabo, Tove A. Hanssen, Gunn Pettersen
Summary: Patient and public involvement (PPI) is seen as important in health research, and this study explored PPI from the perspective of occupational therapy (OT)-trained researchers. The results showed that the researchers' professional background and clinical experience influenced how they approached and facilitated PPI. Valuing experiential knowledge and balancing expectations were highlighted as essential for meaningful PPI.
HEALTH EXPECTATIONS
(2023)
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
Health Care Sciences & Services
Patti Shih, Laila Hallam, Robyn Clay-Williams, Stacy M. Carter, Anthony Brown
Summary: The study focuses on the role of consumer representatives in fostering changes in healthcare services during the COVID-19 pandemic in New South Wales, Australia. Some representatives collaborated to produce consumer-led research and guidelines on pandemic-related patient care, while others mobilized support to advocate for specific healthcare issues in their local areas. The pandemic highlighted the need for consumer representatives to adapt and reimagine their role as active partners in health services, showcasing their resilience and ability to adjust in unexpected crises.
HEALTH EXPECTATIONS
(2022)
Article
Computer Science, Cybernetics
Simon Bowen, Alexander Wilson, Sunil Rodger, Tom Feltwell, Tom Nappey
Summary: This study investigates how digital technology can enable greater depth and scale of participation in urban planning consultations. By utilizing various participatory methods and activities of different depths and scales, along with a versatile website, the study shows that the value of online public consultations can be enhanced.
INTERNATIONAL JOURNAL OF HUMAN-COMPUTER INTERACTION
(2023)
Review
Psychology, Multidisciplinary
Celia M. D. Sales, Filipa Martins, Marisa M. Alves, Sara Carletto, Sonia Conejo-Ceron, Luis Costa da Silva, Anja Cus, Chloe Edridge, Nuno Ferreira, Camellia Hancheva, Esperanca M. A. Lima, Shaun Liverpool, Nick Midgley, Bettina Moltrecht, Patricia Moreno-Peral, Nicholas Morgan, Rose Mortimer, Catarina Pinheiro Mota, Giada Pietrabissa, Sonia Sousa, Randi Ulberg, Julian Edbrooke-Childs
Summary: This protocol paper describes a new project that aims to summarize what is known about patient and public involvement with young people in mental health research. By using systematic reviews, the project will explore how youth PPI has been conducted and its impact on subsequent research and stakeholders.
FRONTIERS IN PSYCHOLOGY
(2021)
Article
Genetics & Heredity
Anne L. R. Schuster, Norah L. Crossnohere, Jonathan Paskett, Neena Thomas, Heather Hampel, Qin Ma, Jessica C. Tiner, Electra D. Paskett, John F. P. Bridges
Summary: This study explored how cancer genomics research programs define and engage patients, and identified several strategies for patient engagement. The programs aim to include diverse and understudied populations, and tailor engagement strategies based on their research goals.
FRONTIERS IN GENETICS
(2023)
Review
Environmental Studies
Helena Solman, Mattijs Smits, Bas van Vliet, Simon Bush
Summary: Public concerns such as landscape conservation, noise pollution, and impacts on bird populations are commonly taken into account in the planning phase of wind energy projects. Public involvement tends to be localized and procedural, aimed at informing local stakeholders and gaining acceptance, but new ways of engagement have emerged that facilitate co-production of wind energy technologies and landscapes.
ENERGY RESEARCH & SOCIAL SCIENCE
(2021)
Article
Obstetrics & Gynecology
Karen J. Gibbins, Jamie O. Lo
Summary: This article calls for reproductive health researchers to include patient and public involvement (PPI) in their research. PPI prioritizes the patient perspective throughout the research process, from study design to result dissemination, and focuses on the people the research aims to serve. PPI, especially when including populations affected by healthcare disparities, can draw attention to these disparities and generate innovative approaches to address them. Various frameworks exist for incorporating PPI into research, and it is particularly crucial in the field of obstetrics and gynecology due to the sensitive nature of the conditions.
CLINICAL OBSTETRICS AND GYNECOLOGY
(2022)
