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Patient engagement strategies in health service delivery have become more common in recent years. However, many healthcare organizations are challenged in identifying the best methods to engage patients in hea...
The Translating Research in Elder Care (TREC) program is a longitudinal partnered program of research in Western Canada that aims to improve the quality of care and quality of life for residents and quality of...
There is evidence in the literature showing that involving patients and the public in health research can have a positive influence on quality, relevance and impact of research. However, patients and the publi...
Funding bodies increasingly require researchers to write lay summaries to communicate projects’ real-world relevance to the public in an accessible way. However, research proposals and findings are generally n...
Patient, Carer and Public Involvement (PCPI) should be embedded in health care research. Delivering PCPI can be challenging, but even when PCPI is carried out it is rarely reported resulting in lost opportunit...
A small medical school research project entitled ‘PPI to strengthen clinical and population health research’ caused me to look at an entirely new field – that of Public and Patient Involvement (PPI). PPI is the d...
The original article was published in Research Involvement and Engagement 2020 6:13
Researchers test treatments to ensure these work and are safe. They do this by studying the effects that treatments have on patients by measuring outcomes, such as pain and quality of life. Often research team...
By participating in priority-setting activities in research, patients and members of the public help ensure that important questions are incorporated into future research agendas. Surveys, focus groups, and on...
People living with and beyond cancer are more likely to have comorbid conditions and poorer mental and physical health, but there is a dearth of in-depth research exploring the psychosocial needs of people exp...
The ROLO Study (Randomised cOntrol trial of a Low glycaemic index diet in pregnancy to prevent macrosomia) was a randomised control trial conducted between 2007 and 2011 to examine if a low glycaemic index (GI...
Cancer trials often incorporate intensive imaging with Magnetic Resonance Imaging (MRI) and Positron Emission Tomography with Computerised Tomography (PET/CT), which can be physically and mentally exhausting f...
The importance of including members of the public has been accorded a significant position in health planning, service delivery and research. But this position masks a lack of clarity about terms that are used...
The PROUD trial, a HIV prevention trial in men who have sex with men and trans women, set out to involve community representatives and trial participants in several ways. PROUD also aimed to evaluate participa...
The Letter to this article has been published in Research Involvement and Engagement 2020 6:20
In the UK, there has been a strong drive towards patient and public involvement (PPI) in health research. Its benefits include improvements in the quality, relevance and acceptability of research, and empowerm...
Background
An increasing number of research projects are now collaborating with persons who have lived experience of a specific health-related situation, such as a prenatal diagnosis of congenital heart defect. Such coll...
Parents are increasingly searching online for information supported by research but can find it difficult to identify results relevant to their own experiences. More troublingly, a number of studies indicate t...
Public voices have largely been absent from the discussions about open access publishing in medical research. Yet the public have a strong interest in ensuring open access of medical research findings because ...
Retinoblastoma is a rare eye cancer that occurs in one or both eyes of infants and young children as a result of errors in the RB1 gene. There are approximately 2000 retinoblastoma survivors in Canada. Those with...
Patient and public involvement (PPI) improves the quality of health research and ensures that research is relevant to patients’ needs. Though PPI is increasingly evident in clinical and health services researc...
Mental health, substance use/addiction and violence (MSV) are important issues affecting the well-being of Indigenous People in Canada. This paper outlines the protocol for a research-to-action program called ...
Background
Community engagement in research has the potential to support the development of meaningful health promotion interventions to address health inequities. People living in rural and remote areas face increased b...
Involvement of service-users at all levels of the mental health system is a policy imperative in many countries internationally. However, putting policy into practice seems complex; little is known about how b...
Despite increasing interest in patient involvement in health care research, researchers may be uncertain about the benefits of involving patients in the design and conduction of clinical studies. We aimed to e...
Accessing support services for depression has been historically difficult given the societal stigma that exists regarding the condition. Recent advances in digital technologies continue to be postulated as a p...
Research is needed to inform patient and provider decisions about how to best care for patients who go to the emergency department with complaints of chest pain when their symptoms are due to anxiety rather th...
Patient and public involvement (PPI) has become an essential part of the design, conduct, and dissemination of research. While researchers who employed PPI mainly report on the positive aspects, in practice PP...
Although it is generally accepted that engaging with members of the public contributes to more actionable and relevant research, there are a limited number of reported evaluations of community engagement initi...
The study is based on a national cluster randomized trial investigating the effect of electronic patient-reported outcomes (ePRO) on treatment outcomes in breast cancer patients receiving adjuvant chemotherapy...
The importance of patient and public involvement (PPI) in the design and conduct of health research projects is gaining widespread recognition; however, it is still a developing area. Furthermore, PPI in metho...
The value and importance of qualitative research and Patient and Public Involvement (PPI) for developing complex health interventions is widely recognised. However, there is often confusion between the two, wi...
Patient participation in decision-making on health-related research has gained ground. Nineteen Dutch health-related research-funding organisations (HFs) have taken up the challenge to include patients in thei...
Patient engagement (PE) in pediatric health services research is challenging due to contextual factors such as busyness of parenting, work schedules, and diverse family structures. This scoping review seeks to...
Patient and Public Involvement (PPI) strategic documents are viewed as an essential feature of organisational commitment to openness and transparency. They provide a mechanism to communicate opportunities for ...
Patient and public involvement and engagement is an important and expected component of health-related research activity in the UK. Specifically within the health research sphere, public engagement (usually de...
Involving patients in scientific research has been shown to improve the relevance of the research, as well as its quality and applicability. Harteraad, the Dutch patient organization for people with cardiovasc...
The significance of patient and public engagement is increasingly recognized in health research, demonstrated by explicit requirements for patient and public engagement by funding agencies and journals. Such r...
Some previous researchers (Locock et al) have written about what may be the best way for public contributors to be involved in data analysis in research projects. Their experience has been that giving public c...
The original article was published in Research Involvement and Engagement 2019 5:1
The Letter to this article has been published in Research Involvement and Engagement 2019 5:26
The original article was published in Research Involvement and Engagement 2019 5:27
Public engagement events are an important early strategy in developing a meaningful research agenda, which is more impactful and beneficial to the population. Evidence indicates the potential of such activitie...
Cystic fibrosis (CF) is the commonest life-limiting inherited disorder in the UK. It affects many parts of the body including the lungs and gut leading to increased infection and problems digesting food. Peopl...
Evidence shows that public and patient involvement in research has a positive effect on its quality and end-results. Thus, public and patient involvement in all stages of research is becoming commonplace. Ther...
Service users should be involved in every part of the research process, including analysis of qualitative research data such as interviews and focus groups. To enhance their participation, confidence and contr...
As the role of Patient and Public Involvement contributors expands to all stages of the research cycle, there is increasing demand for training that meets the needs of this diverse population. To help meet thi...
Patient and Public Involvement (PPI) in health and social care research has been shown to improve the quality and relevance of research. PPI in data linkage research is important in ensuring the legitimacy of ...
Empowerment for people with dementia (PWD) is not well defined within the research literature and we feel that this is an important area for development. It is important to seek, consult, and co-produce such a...
With the increase in user activism in the Western societies in recent years, there has also been an increase in promoting user involvement in research. Hence, is necessary to address the danger of tokenism, a ...
With patient and public engagement in many aspects of the healthcare system becoming an imperative, the recruitment of patients and members of the public into service and research roles has emerged as a challe...
Patient and public involvement (PPI) in mental health research, including self-harm and suicide research, is desirable (as with other health topics) but may involve specific challenges given the perceived sens...
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