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Conversations about research priorities with members of the public are rarely designed specifically to include people who identify as Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) and are not research...
Core outcome sets (COS) are lists of consensus-determined outcomes to be measured and reported in all clinical research studies within a disease area. While including patients and families in COS development t...
There is an apparent reluctance to engage ‘vulnerable’ participants in conversation about sensitive topics such as suicide and violence and this can often lead to a paucity of research in these areas. This stu...
Involving patients and their carers in research has become more common, as funders demand evidence of involvement. The ‘Patient Voice in Cancer Research’ (PVCR) is an initiative led by University College Dubli...
This study sought to utilise participatory research methods to identify the perspectives of people with diabetes regarding which diabetes outcomes were most important to them. These findings were then used to ...
Understanding of the value of patient and public involvement in research has grown in recent years, but so too has uncertainty about how best to practice and how best to report such involvement in research out...
Fear of stigmatization, self-stigmatization, and insufficient information can lead to secrecy, reduced help-seeking, lower self-esteem, and lower self-efficacy among people affected by suicidality or suicide. ...
Although public engagement in research is increasingly popular, the involvement of citizens living in vulnerable circumstances is rarely realized. This narrative review aims to describe and critically analyse ...
A growing interest has centered on digital storytelling in health research, described as a multi-media presentation of a story using technology. The use of digital storytelling in knowledge translation (KT) is...
The effective impact of patient engagement (PE) across the medicines development continuum is widely acknowledged across diverse health stakeholder groups, including health authorities; however, the practical ...
The impact of child health research can be far reaching; affecting children’s immediate health, their adult health, the health of future generations and the economic wellbeing of countries. Consumer and commun...
Collaborating with end-users to develop interventions tailored to fit unique circumstances is proposed as a way to improve relevance and effectiveness of an intervention. This study used a local needs driven a...
The inclusion of stakeholders throughout the research process has been gaining recognition as an approach that can improve the quality and impact of research. Stakeholder engagement for dementia care research ...
Increasing the accessibility of public and patient involvement (PPI) in health research for people from diverse backgrounds is important for ensuring all voices are heard and represented. Critiques of PPI bein...
Patient and public involvement (PPI) in health and social care research is considered important internationally, with increasing evidence that PPI improves the quality, relevance and outcomes of research. Ther...
Photovoice is a method used to help engage community members to understand local realities and promote social change. Photovoice uses cameras in the hands of participants as a tool to visually document a speci...
Involving patients and communities with health research in low- and middle-income countries (LMICs) contributes to increasing the likelihood that research is relevant in local context and caters to the needs o...
Public and Patient Involvement, Engagement and Participation research encompasses working with patients/service users (people with a medical condition receiving health service treatment), public members, careg...
Patient and public involvement is increasingly considered important in health research. This paper reflects, from both academic and lived experience perspectives, on involving people with lived experience in a...
Engaging parents in child health research can facilitate choosing relevant research questions, recruiting participants who reflect the diversity of large communities, and disseminating study results to communi...
Public involvement in clinical translational research is increasingly recognised as essential for relevant and reliable research. Public involvement must be diverse and inclusive to enable research that has th...
The integrated uptake of patient-reported experience measures, using outcomes for the micro, meso and macro level, calls for a successful implementation process which depends on how stakeholders are involved i...
The objectives are to: 1) describe engagement processes used to prioritize and address regional comprehensive cancer control needs among a Community-Academic Advisory Board (CAB) in the medically-underserved, ...
This paper presents a user involvement process, called needs-led research, conducted as a part of a doctoral degree project aiming to explore research priorities and, ultimately, to develop a final top 10 list...
Clinical Trials Units are encouraged to integrate Patient and Public Involvement (PPI) into all aspects of trial design, running and oversight. This research explored the induction and training of PPI Contribu...
Patient and public involvement in research helps to make it more relevant and useful to the end-users. Involvement influences the design, delivery and dissemination of research, ultimately leading to better se...
England operates a National Data Opt-Out (NDOO) for the secondary use of confidential health data for research and planning. We hypothesised that public awareness and support for the secondary use of health da...
Access to, and awareness of, appropriate authorship criteria is an important right for patient partners. Our objective was to measure medical journal Editors-in-Chief’ perceptions of including patients as (co-...
In response to a growing movement to involve patients and community stakeholders in health research, we established a parent advisory group in 2016. The group meets regularly to act as advisors and partners fo...
Guidelines for patient decision aids (DA) recommend target population involvement throughout the development process, but developers may struggle because of limited resources. We sought to develop a feasible m...
During care transitions, the older (75+) patient’s agenda can easily be missed. To counteract this, involving patients in shared clinical decision making has proven to be of great value. Likewise, involving pa...
In July 2020 Cancer Research UK undertook a rapid review of the studies in its clinical research portfolio to assess the impact of the Covid-19 pandemic. The review examined over 160 research studies funded by...
Knowledge mobilisation requires the effective elicitation and blending of different types of knowledge or ways of knowing, to produce hybrid knowledge outputs that are valuable to both knowledge producers (res...
A controlled human infection model (CHIM) involves deliberate exposure of volunteers to pathogens to assess their response to new therapies at an early stage of development. We show here how we used public inv...
Australian women from migrant and refugee communities experience reduced access to sexual and reproductive healthcare. Human-centred design can be a more ethical and effective approach to developing health sol...
In line with Good Clinical Practice and the Declaration of Helsinki, it is the investigator’s responsibility to ensure that research participants are sufficiently informed, to enable the provision of informed ...
A growing trend in research is to involve co-researchers. It is referred to as Patient and Public Involvement (PPI) and comprises three groups: the patients, the public, and the researchers. Like in adult publ...
Patient and Public Involvement (PPI) in research is increasingly being utilized to better connect patients and researchers. The Patient Engagement Studio (PES) supports PPI in research by working directly with...
Participatory approaches to developing health interventions with end-users are recommended to improve uptake and use. We aimed to explore the experiences of co-designing an online-delivered pain management pro...
The Canadian Institutes for Health Research launched a national ‘Strategy for Patient-Oriented Research’ (SPOR) in 2011. Patient-oriented research is defined as a continuum of research that engages patients as...
Citizen involvement is important for ensuring the relevance and quality of many research and innovation efforts. Literature shows that inadequate citizen involvement poses an obstacle during the research, deve...
Patient partners can be described as individuals who assume roles as active members on research teams, indicative of individuals with greater involvement, increased sharing of power, and increased responsibili...
APPROACH is an EU-wide research consortium with the goal to identify different subgroups of knee osteoarthritis to enable future differential diagnosis and treatment. During a 2-year clinical study images, bio...
The Correction to this article has been published in Research Involvement and Engagement 2022 8:15
It has been proposed that the existing ASPirin in Reducing Events in the Elderly Extension observational cohort study (ASPREE-XT) would provide a platform for a future multigenerational research study (MGRS). ...
The publication of the United Kingdom (UK) Standards for Public Involvement (PI) (UK Standards) in research drew a clear line in the sand regarding the importance of utilising the unique experience, skills and...
As patient-oriented research gains popularity in clinical research, the lack of patient input in foundational science grows more evident. Research has shown great utility in active partnerships between patient...
The patients’ and the carers’ roles in health service research has changed from being solely participants in studies to also being active partners and co-designers in the research process. Research carried out...
Community engagement may make research more relevant, translatable, and sustainable, hence improving the possibility of reducing health disparities. The purpose of this study was to explore strategies for comm...
Collaborative working between academic institutions and those who provide health and social care has been identified as integral in order to produce acceptable, relevant, and timely research, and for outputs t...
Co-production has been widely recognised as a potential means to reduce the dissatisfaction of citizens, the inefficacy of service providers, and conflicts in relations between the former and the latter. Howev...
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