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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...
Involvement of young partners by experience in research is on the rise and becoming expected practice. However, literature on how to promote equitable and meaningful involvement of young people is scarce. The ...
Globally many older persons with dementia are living at home to maintain independence within the community. As older persons with dementia transition from early to moderate or advanced stages of dementia they ...
Including youth with disabilities and their families as partners in childhood disability research is imperative but can be challenging to do in an authentic and meaningful way. Simulation allows individuals to...
We aimed to contribute to developing practical guidance for implementing person-centred quality indicators (PC-QIs) for primary care in Alberta, Canada. As a first step in this process, we conducted stakeholde...
This paper considers remote working in patient public involvement and engagement (PPIE) in health and social care research. With the advent of the Covid-19 pandemic and associated lock-down measures in the UK ...
Youth violence is a global public health issue and the highest rates are reported in Low and Middle-Income Countries (LMICs). Higher rates of youth violence are reported in Sri Lanka as well. Students who fail...
Early childhood is a critical period of development for infants, young children, and their families. An array of services, programs, and interventions exist to support families during this life stage, often de...
Patient engagement in research consists in involving patients as partners across the research cycle. This practice has quickly become an international standard, with funding bodies actively encouraging it. As ...
Older adults have been disproportionately impacted by the COVID-19 pandemic. COVID-19 restrictions such as stay at home orders and physical distancing measures have been implemented to reduce older adults’ ris...
Patients play a central role in nursing preceptorship relationships, a professional educational relationship between a staff nurse and student nurse that is grounded in providing patient care. Yet the patient ...
In the COVID-19 pandemic, numerous researchers postponed their patient and public involvement (PPI) activities. This was mainly due to assumptions on patients’ willingness and skills to participate digitally. ...
The Canadian Strategy for Patient-Oriented Research supports the inclusion of patients as partners throughout the research process. Purposeful and meaningful engagement of patient partners after stroke can pre...
A key component of patient-oriented research is the engagement of patients as partners in the design and conduct of health research. While there is now national infrastructure and networks to support the engag...
Albertans4HealthResearch, supported by the Alberta Strategy for Patient-Oriented Research Patient Engagement Team, hosted a virtual round table discussion to develop a list of considerations for successful par...
Patient and Public Involvement (PPI) is the active partnership between researchers, patients and laypeople in the process of creating research. PPI in stroke aphasia research aims to ensure equal opportunities...
Conducting mixed methods research is critical for healthcare researchers to understand attitudes, behaviors, and experiences on health-related topics, such as vaccine acceptance. As the COVID-19 pandemic has m...
Partnering with patients and family members affected by cancer is essential for meaningful research, public engagement and outreach, and advocacy activities.
Smartphones are being increasingly used for research owing to their multifunctionality and flexibility, and crowdsourced research using smartphone applications (apps) is effective in the early detection and ma...
Knowledge about the specific engagement activities pursued and associated impacts of patient engagement in research in Canada remains nascent. This study aimed to describe engagement activities and perceived i...
Although interest in Patient and Public Involvement in health-related research is growing, there seems to be a lack of guidance supporting researchers in deciding on methods and levels for Patient and Public I...
Despite a movement toward the inclusion of patient partners or advisors as part of the research team in all funded studies, few publications have discussed patient engagement from the patient partners’ perspec...
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