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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...
Patients should be involved in the design, conduct and dissemination of research that affects them. Patient involvement leads to empowerment and enhances the quality of research. Differing motives and expectat...
Public involvement in research has evolved over the last two decades in a culture dominated by the principles of evidence-based medicine. It is therefore unsurprising that some researchers have applied the sam...
In 2013, the Cambridge Clinical Research Facility (CCRF) set up a Children’s Non-Executive Research Board to advise on service and facility development and research involving children and young people (CYP). I...
In the publication of this article [1] there is an error in the Results section in the sub-section ‘Better financial incentives and less bureaucracy’.
The original article was published in Research Involvement and Engagement 2019 5:5
Whilst Patient and Public Involvement and Engagement (PPIE) are widely regarded as critical to developing clinical research, there is a perception that older adults may not be able to contribute and there is l...
For patients and the public to work collaboratively with researchers, they need support and opportunities to engage in learning that builds on their skills and grows their confidence. In this article, we argue...
This paper describes the methods that were used to develop a health behaviour intervention specifically for teenage and young adult cancer survivors (TYACS). The program of work, carried out in partnership wit...
There have been many attempts to improve how healthcare services are developed and delivered. Despite this, we know that there are many gaps and differences in practice and that these can lead to poor patient ...
Foundations in Patient-Oriented Research is a course designed and piloted in Canada to help patients, researchers, health care professionals and health system decision-makers gain an introductory understanding of...
The James Lind Initiative (JLI) was a work programme inaugurated by Iain Chalmers and Patricia Atkinson to press for better research for better health care. It ran between 2003 and 2018, when Iain Chalmers ret...
In recent years, there has been a global call to reduce the numbers of preventable stillbirths and increase public awareness about the incidence and impact of pregnancy loss. The lived experiences of bereaved ...
People participation teams are being established in many British NHS Trusts. They support active service user involvement in staff recruitment interviews, in evaluations of care and in programmes to improve se...
The Correction to this article has been published in Research Involvement and Engagement 2019 5:12
There is a need for methods that engage lay people and other stakeholders, such as patients and healthcare providers, in developing research questions about health issues important to them and their communitie...
Background: Society has to cope with a large burden of health issues. There is need to find solutions to prevent diseases and help individuals live healthier lifestyles. Individual needs and circumstances vary gr...
Patient or user involvement in health research is well-established but is often limited to advising on research questions and design, leaving researchers to collect and analyse ‘data’ (which in this paper mean...
The Letter to this article has been published in Research Involvement and Engagement 2019 5:27
Young people with cancer are often described as ‘hard to reach’, ‘difficult to engage’ and/or ‘vulnerable’. Consequently, they are often over looked for patient and public involvement activities. We set out to...
Patient engagement (or patient and public involvement) in health research is becoming a requirement for many health research funders, yet many researchers have little or no experience in engaging patients as p...
Involving patients and members of the public to help shape and carry out research is recommended in health research in the United Kingdom (UK). There are a number of regional networks of Patient and Public Inv...
Increasingly, health researchers are conducting their research in partnership with non-researchers such as patients and caregivers, advocacy groups, clinicians, and policymakers. The idea behind this partnersh...
This article examines the overall experiences of community researchers in their involvement with the ‘PROMPT’ project for smoking cessation, which targeted community members who were homeless or at-risk for ho...
IMPACT (Improving Mood with Psychoanalytic and Cognitive Therapies) is a multi-centre randomised controlled trial of three therapeutic interventions for the treatment of depression in young people. IMPACT- My ...
Integrated knowledge translation is a research approach in which researchers work as partners with the people for whom the research is meant to be of use. A partnered approach can support the use of Indigenous...
Involving older people with dementia in research is increasingly recognised as important to ensure that research is relevant and beneficial for older people with dementia. But researchers need to know how best...
Two goals of public health research are to understand what causes disease and ill health, and what can be done to prevent it. To develop appropriate and effective actions, we need to know what resources are av...
A partnership between a public engagement specialist, and a director of a digital radio station working towards social change, The AudioLab is a creative and innovative way to support diverse young people to c...
While there is increasing recognition of the importance of stakeholder involvement in health research priority setting there is a paucity of literature reporting on stakeholder involvement in health research p...
Patient and Public Involvement (PPI) is seen as a prerequisite for health research. However, current Patient and public involvement literature has noted a paucity of recording of patient and public involvement...
Usher syndrome is the most common cause of deafblindness worldwide and is estimated to affect between 3 and 6 people in every 100,000. Children are born with hearing loss and develop sight loss in their early ...
When planning a research project into patients’ experiences of online booking of GP appointments, we tried out a new way to get feedback from the public on our research ideas and design. As the research topic ...
Randomized controlled trials (“randomized trials”) can provide evidence to assess the equity impact of an intervention. Decision makers need to know about equity impacts of healthcare interventions so that peo...
The Alberta Depression Research Priority Setting Project aimed to meaningfully involve patients, families and clinicians in determining a research agenda aligned to the needs of Albertans who have experienced ...
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