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Public involvement (often referred to as patient and public involvement or PPI) integrates the voices of the public in health and care research. However, groups such as care home residents are often excluded f...
Patient and public involvement (PPI) is increasingly seen as essential to health service research. There are strong moral and ethical arguments for good quality PPI. Despite the development of guidance aimed a...
Policymakers and practitioners in health promotion (e.g. those working for local, state or federal government organisations or community and non-government organisations with a focus on health and wellbeing) a...
Patients themselves are best placed to provide insights on the lived experience and to lead the analysis of such insights to bring the patient voice into peer-reviewed literature. In doing so, they can meet th...
Patient and Public Involvement (PPI) in clinical trial research is recognised as relevant but the active involvement of patients and the public in basic science or laboratory-based research is seen as more cha...
The involvement of young people as peer researchers, especially with lived experience, is increasingly considered important in youth mental health research. Yet, there is variation in the understanding of the ...
There is growing recognition that engaging people with lived experience (PWLE) in mental health and substance use research improves the quality of the research in terms of relevance to the population and the f...
Public and patient involvement and engagement (PPIE) is an important part of research. The inclusion of PPIE in research is becoming more widespread, however, there are some areas where it is still uncommon. F...
Patient and public involvement and engagement (PPIE) can improve the relevance, quality, ethics and impact of research thus contributing to high quality research. Currently in the UK, people who get involved i...
Public and patient involvement aims to improve research quality, relevance, and appropriateness. Despite an increasing evidence base on the influence of public involvement in health research, the role of invol...
There are growing calls for cancer screening to become more personalised by considering a range of risk factors, rather than a one-size-fits-all, age-based approach. The aim of this public involvement was to c...
Established in 2015, the Multi-Stakeholder Engagement (MuSE) Consortium is an international network of over 120 individuals interested in stakeholder engagement in research and guidelines. The MuSE group is de...
Identity is how we understand ourselves and others through the roles or social groups we occupy. This review focuses on lived experience researchers and providers and the impact of these roles on identity. Liv...
Co-research is a collaborative approach to research, promoting involvement of individuals with lived experience of a research area as experts by experience. Recently, the importance of co-research within palli...
Although including patients as full, active members of research teams is becoming more common, there are few accounts about how to do so successfully, and almost none of these are written by patient partners t...
People living with heart failure (HF) are particularly vulnerable after hospital discharge. An alliance between patient authors, clinicians, industry, and co-developers of HF programs can represent an effectiv...
Implicating patients in research is gaining popularity around the world and is now the reference of many funding agencies. Understanding these partnerships is necessary to grasp this new reality. The experienc...
There is growing recognition of the importance of patient and public stakeholder involvement (PPI) in patient preference research. However, limited evidence exists regarding the impact, barriers and enablers o...
Patient involvement in health research is rarely driven solely by patients, who could be considered to have the highest degree of investment in such research. In the Kidney Connect project, the patients have b...
Talking about breathlessness can be emotionally challenging. People can feel a sense of illegitimacy and discomfort in some research contexts. Comic-based illustration (cartooning) offers an opportunity to com...
The high incidence of COVID-19 globally has led to a large prevalence of Long COVID but there is a lack of evidence-based treatments. There is a need to evaluate existing treatments for symptoms associated wit...
Community engagement in research is widely accepted as best practice, despite gaps in existing frameworks to evaluate its process, context, and impact on research. The Screening in High Schools to Identify, Ev...
Patient and Public Involvement (PPI) groups are becoming more established as collaborators with academic researchers and institutions to ensure that research is important and relevant to end users, and to iden...
Rare diseases where prognosis is poor provide limited scope for patient and public involvement (PPI). One such disease is mesothelioma, a cancer of the lung pleura or of the peritoneum caused by exposure to as...
The importance of involving members of the public in the development, implementation and dissemination of research is increasingly recognised. There have been calls to share examples of how this can be done, a...
In response to racial inequity in asthma, asthma-related research among diverse patients is vital. However, people from historically marginalized groups are underrepresented in clinical and patient-centered ou...
Long-term care (LTC) settings have been disproportionately affected by the COVID-19 pandemic; it is important to address unmet needs and explore practical strategies for supporting LTC residents and staff. The...
Children and young people’s (CYP) involvement is an increasing priority in UK healthcare and in heath research, alongside recognition that involving CYP in research requires different considerations to involvi...
Co-creation is a method to develop acceptable, contextually appropriate and potentially more effective interventions. Adolescents with intellectual disabilities (ID) seldomly participate in research and progra...
Participatory research has been described to improve the relevance of research findings for the society in terms of quality of healthcare services and other public benefits. Nevertheless, there is limited guid...
Consumer and community involvement (CCI) in health research is increasingly recognised as best practice and is closely linked with calls for epistemic justice and more transparent university collaborations wit...
Little is known about patient engagement in the context of large teams or networks. Quantitative data from a larger sample of CHILD-BRIGHT Network members suggest that patient engagement was beneficial and mea...
The role of patients in cancer research is undergoing a significant evolution as all stakeholders seek to enhance the level of direct patient involvement in the design and development of clinical trials. Howev...
In Canada, the Canadian Institutes of Health Research launched the Strategy for Patient-Oriented Research (SPOR) in 2011. The strategy defines ‘patient-oriented research’ as a continuum of research that engage...
There is increasing recognition of the importance of patient involvement in research. In recent years, there has also been growing interest in patient partnerships with doctoral studies students. However, it c...
The chronic complications of ageing with HIV are not well studied in sub-Saharan Africa (SSA) where general healthcare resources are limited. We aimed to collaborate with individuals living with HIV aged ≥ 50 ...
Public and patient involvement (PPI) through Young Person’s Advisory Groups (YPAG) enables children to provide guidance and insight into research activities. PPI is an important characteristic of research, how...
The National Institute for Health and Care Research (NIHR) Policy Research Unit in Behavioural Science (PRU-BS) was funded to inform government on the application of behavioural science in health and social ca...
Using the technique of co-production to develop research is considered good practice. Co-production involves the public, practitioners and academics working together as equals throughout a research project. Co...
Within the field of patient and public involvement in health service research, there is a growing movement towards not only involving patients in research but engaging them as co-producers of knowledge. We explo...
Citizen engagement, or partnering with interested members of the public in health research, is becoming more common. While ongoing assessment of citizen engagement practices is considered important to its succ...
Research codesign is generally defined as end-users’ involvement in planning, implementation, and evaluation of projects. Recently, there has been a growing interest in codesign to maximise research acceptabil...
Making decisions about your own life is a key aspect of independence, freedom, human rights and social justice. There are disabled people who, without support, would be assessed as incapable of making certain ...
Many community-based HIV research studies incorporate principles of greater involvement and meaningful engagement of people living with HIV (GIPA/MEPA) by training people with HIV as peer researchers. Unfortun...
Patient and public involvement in health research is important to ensure that research remains relevant to the patient groups it intends to benefit. The UK NIHR funded Blueprint study aimed to develop a ‘model...
Rapid qualitative studies conducted with patient and public involvement can help promote policy-relevant and efficient research. There is a need to understand the experiences of researchers, patients, and memb...
Lung cancer has one of the highest incidence and mortality rates worldwide. Physical activity can provide those diagnosed with lung cancer with several physical and psychological benefits. However, the examina...
Potential solutions to bridging the research practice gap include collaborative frameworks and models. Yet there is little evidence demonstrating their application in practice. In addressing this knowledge gap...
Historically, disabled people have been marginalised in research that traditionally adopted a medical model perspective. Since the 1970’s, there has been a shift from research on disabled people to research wi...
The effects of stakeholder engagement, particularly in comparative effectiveness trials, have not been widely reported. In 2014, eight comparative effectiveness studies targeting African Americans and Hispanic...
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