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In line with the European Paediatric Regulation, the European Medicines Agency (EMA) asks for investigation of a medicine’s acceptability in paediatric medicines development. A standardised acceptability testi...
Although stakeholder involvement in policymaking is attracting attention in the fields of medicine and healthcare, a practical methodology has not yet been established. Rare-disease policy, specifically resear...
The re-conceptualization of patients’ and caregivers’ roles in research from study participants to co-researchers (“patient partners”) has led to growing pains within and outside the research community, such a...
Incorporating Public and Patient Involvement (PPI) into doctoral research is valued by PhD funders and scholars. Providing early career researchers with appropriate training to develop skills to conduct meanin...
Identifying locally relevant and agreed-upon priorities for improving young people’s mental health, aligned with social and environmental factors, is essential for benefiting target communities. This paper des...
Research co-design is recommended to reduce misalignment between researcher and end-user needs and priorities for healthcare innovation. Engagement of intensive care unit patients, clinicians, and other stakeh...
Patient and Public Involvement and Engagement (PPIE) is important to all aspects of health research. However, there are few examples of successful PPIE in statistical methodology research. One of the reasons f...
Certain communities are underserved by research, resulting in lower inclusion rates, under researched health issues and a lack of attention to how different communities respond to health interventions. Minorit...
Patient and public involvement (PPI) ensures that research is designed and conducted in a manner that is most beneficial to the individuals whom it will impact. It has an undisputed place in applied research a...
The quality of Patient and Public Involvement (PPI) in healthcare research varies considerably and is frequently tokenistic. We aimed to co-produce the Insight | Public Involvement Quality Recognition and Awar...
In support of UCB pharmaceutical research programs, the aim of this research was to implement a novel process for patient involvement in a multidisciplinary research group to co-create a clinical outcome asses...
Participant involvement in research studies is not a new concept, yet barriers to implementation remain and application varies. This is particularly true for pandemic response research studies, where timeframe...
To develop a consumer and community involvement (CCI) strategy for the Women’s Health Research, Translation and Impact Network (WHRTN), an initiative of the Australian Health Research Alliance (AHRA).
Students experience lower levels of wellbeing than the general, age-matched population. A whole-university approach to mental health is encouraged, which must work for individuals from all backgrounds and expe...
Family engagement in research is crucial to generating relevant, impactful, and meaningful priorities and outcomes. Although there has been increased awareness and value for patient-oriented research, most pat...
Patients and caregivers investigate a wide range of approaches to address the signs and symptoms of their condition. Such investigation could lead to new treatment insights or avenues for research. However, cu...
Putting patients’ needs and priorities at the forefront of healthcare initiatives and medical product development is critical to achieve outcomes that matter most to patients. This relies on the integration of...
Evidence suggests resources and services benefit from being developed in collaboration with the young people they aim to support. Despite this, patient and public involvement and engagement (PPIE) with young p...
Public and Patient Involvement in research is becoming a requirement on most research funding applications; this includes both healthcare and lab-based research. Whilst case studies and practical guides have b...
The involvement of adolescents and young adults (AYAs) with lived experience of health and mental health conditions as partners in research is increasing given the prominence of participatory approaches to res...
Pediatric trials are possible through voluntary participation of children, youth (age ≤ 18 years), and their families. Despite important arguments for trialists to provide trial progress or results, and eviden...
Promoting wellbeing of persons with dementia and their families is a priority of research and practice. Engaging diverse partners, including persons with dementia and their families, to co-develop intervention...
As research teams, networks, and institutes, and health, medical, and scientific communities begin to build consensus on the benefits of patient engagement in cancer research, research funders are increasingly...
Metastatic cancer is often experienced by patients as a death sentence. At the same time, translational scientists approach metastasis also as an interesting phenomenon that they try to understand and prevent....
There is significant value in co-produced health research, however power-imbalances within research teams can pose a barrier to people with lived experience of an illness determining the direction of research ...
Increased levels of physical activity are associated with beneficial health effects for people with type 2 diabetes, cardiovascular disease and/or severe obesity; however, transforming knowledge about these ef...
Approximately one in ten children globally live with kinship caregivers—relatives and family friends who step in to care for a child when parents are unable to do so. When families take on the role of informal...
Posed 16 years ago in a much-cited editorial by gerontologist, Alan Walker, “Why involve older people in research?” is a question that has since inspired researchers in many countries and from diverse discipli...
Patient engagement in research refers to collaboration between researchers and patients (i.e., individuals with lived experience including informal caregivers) in developing or conducting research. Offering no...
While much attention and emphasis have been given to the role and value of advisory groups in social science research, less has been published on the experiences of those involved in such collaborative efforts...
The CHILD-BRIGHT Network created a parent peer mentor (PPM) role to support other parents who were engaging as partners in the different research projects and activities of the network. We aim to describe how ...
Recovery Colleges (RCs) are mental health and well-being education centres where people come together and learn skills that support their wellness. Co-production, co-learning and transformative education are f...
Racially marginalised groups are underserved in healthcare and underrepresented in health research. Patient and public involvement and engagement (PPIE) is established as the method to ensure equity in health ...
Researchers often use terminology to define their participant groups that is rooted in a clinical understanding of the group’s shared identity(ies). Such naming often ignores the ways that the individuals who ...
Patient and Public Involvement (PPI) in aphasia research requires researchers to include people with aphasia as research partners from the beginning of the study. Yet the quality of reporting on the level and ...
The Chronic Pain Network (CPN) is a pan-Canadian research network focused on innovating and improving the quality and delivery of pain prevention, assessment, management and research for all Canadians. An impo...
Over the past decades, there has been a growing international interest in user involvement in healthcare research. However, evidence on the management and impact of patient and public involvement in Nordic hea...
In the United Kingdom, healthcare data is collected on all patients receiving National Health Service (NHS) care, including children and young people (CYP) with cancer. This data is used to inform service deli...
The evaluation of patient engagement in research is understudied and under-reported, making it difficult to know what engagement strategies work best and when. We provide the results of an evaluation of patien...
To investigate and describe the process of using experience-based co-design (EBCD) to develop mobile/tablet applications to support a person-centred and empowering stroke rehabilitation.
Female genital mutilation (FGM) is a practice that involves the removal of external female genitalia and is widely known as a violation of human rights. The custom is illegal in the United Kingdom (UK) and car...
The growth of data science and artificial intelligence offers novel healthcare applications and research possibilities. Patients should be able to make informed choices about using healthcare. Therefore, they ...
Although medical research dissemination is intended to benefit members of society, few members of society actually participate in the process of publishing findings. This study shares findings from community m...
The original article was published in Research Involvement and Engagement 2022 8:8
Upper extremity (UE) involvement is prevalent in 73% of individuals with arthrogryposis multiplex congenita (AMC), yet no AMC-specific outcome measure exists. When developing a measure specific to a population...
People who use drugs (PWUD) have difficulty participating in clinical research. We evaluated approaches to engage PWUD in clinical research, using facilitated telemedicine for hepatitis C virus (HCV) care as a...
In patient-oriented research (POR), patients contribute their valuable knowledge and lived-experiences to work together as active research partners at all stages of the health research cycle. However, research...
The active involvement of patients and the public in the design and delivery of health research has been increasingly encouraged, if not enforced. Knowledge of how this is realised in practice, especially wher...
Over the last decade there has been considerable research into the treatment, management, and quality of life of people living with multiple myeloma. However, there has been limited investigation into topics d...
In Australia, Aboriginal and Torres Strait Islander (Indigenous) families have strong, cohesive, and nurturing cultural practices that contribute to effective family functioning and child rearing. These practi...
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