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Research Involvement and Engagement

Adrian Curwen, Jane Fernandes, Rachael Howison, Paul Binfield, Frank Rohricht, Domenico Giacco
Background: 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 services. No studies exploring experience of people involved in these activities are available in published mental health literature. In this project we explored benefits experienced and suggestions for improvement provided by service users. Methods: The design, materials and methods of the project were developed in workshops including N  = 15 service users...
2019: Research Involvement and Engagement
Carlin L Rafie, Emily B Zimmerman, Dawn E Moser, Sarah Cook, Fatemeh Zarghami
Plain English summary: 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 communities. Involving stakeholders helps ensure that funding goes to research that addresses their concerns. The SEED Method engages stakeholders in a systematic process to explore health issues and develop research questions. Diverse groups of stakeholders participate at three levels: as collaborators that lead the process throughout, as participants who use their expertise to develop the questions, and as consultants who provide additional perspectives about the health topic...
2019: Research Involvement and Engagement
Calum F Leask, Marlene Sandlund, Dawn A Skelton, Teatske M Altenburg, Greet Cardon, Mai J M Chinapaw, Ilse De Bourdeaudhuij, Maite Verloigne, Sebastien F M Chastin
Plain English summary: 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 greatly and one size fit all solutions do not tend to work well. More tailored solutions centred on individuals' needs and circumstances can be developed in collaboration with these individuals. This process, known as co-creation, has shown promise but it requires guiding principles to improve its effectiveness...
2019: Research Involvement and Engagement
Rachel M Taylor, Jeremy S Whelan, Faith Gibson, Sue Morgan, Lorna A Fern
Plain English summary: 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 involve young people with cancer to work as co-researchers in the design of the largest ever study of young people with cancer, called BRIGHTLIGHT. In the 10 years since the BRIGHTLIGHT feasibility work began we have involved more than 1200 young people as co-researchers, collaborators, consultants and dissemination partners...
2018: Research Involvement and Engagement
Danielle E Rolfe, Vivian R Ramsden, Davina Banner, Ian D Graham
Plain English summary: 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 partners as opposed to research subjects. Additionally, many patients have no experience providing input on the research design or acting as a decision-making partner on a research team. Several potential risks exist when patient engagement is done poorly, despite best intentions...
2018: Research Involvement and Engagement
Elspeth Mathie, Helena Wythe, Diane Munday, Graham Rhodes, Penny Vicary, Paul Millac, Julia Jones
Plain English summary: 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 Involvement (PPI) groups, which support the collaboration between researchers, patients and public members. We are a group of researchers, patients and public members who came together via a PPI regional network in the East of England to collaborate on a research study about the extent of feedback from researchers to PPI contributors...
2018: Research Involvement and Engagement
Claire Kendall, Michael Fitzgerald, Rachel Seoyeon Kang, Sabrina T Wong, Alan Katz, Martin Fortin, Emilie Dionne, Kerry Kuluski, Mary Ann O'Brien, Jenny Ploeg, Lois Crowe, Clare Liddy
Plain English summary: 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 partnership is to make research more relevant and appropriate. However, so far there is not much evidence about how this partnership or engagement actually affects research. We conducted an online survey of 12 teams in Canada that have engaged patients and other stakeholders in community based health research, partly as a requirement to obtain funding...
2018: Research Involvement and Engagement
Catherine B Charron, Alzahra Hudani, Tina Kaur, Tiffany Rose, Kelly Florence, Sadia Jama, Smita Pakhalé
Plain summary: 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 homelessness. More specifically, four community members, representing the study population were involved in the project as researchers. They were asked to complete surveys at both the beginning and end of each research training session to better understand their learning as it related to using a key instrument for this project, a spirometer, to measure project participants' lung function...
2018: Research Involvement and Engagement
Valerie Dunn, Sally O'Keeffe, Emily Stapley, Nick Midgley
Background: 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 Experience (IMPACT-ME), a qualitative research study, followed up a sub-sample of families involved in IMPACT to explore young people's experiences of therapy and depression. Members of the IMPACT-ME steering group, who brought their own experiences of depression and engaging with mental health services, were keen to find ways to provide information about depression and help-seeking beyond traditional academic audiences, specifically to other young people experiencing depression and wondering where to turn: their chosen medium was film...
2018: Research involvement and engagement
Janet Jull, Melody Morton-Ninomiya, Irene Compton, Annie Picard
Plain English summary: 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 ways of knowing in health research that may then be used in health care. This is important as current health care models do not often support Indigenous values, ways of knowing, and care practices. We describe 1) why it is necessary to co-create knowledge that includes the voices of Indigenous community members, 2) how integrated knowledge translation is a way of doing research that includes many views and 3) how integrated knowledge translation can help those involved in research to agree upon and uphold ethical ways of doing research...
2018: Research Involvement and Engagement
Jahanara Miah, Piers Dawes, Iracema Leroi, Suzanne Parsons, Bella Starling
Plain English summary: 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 to involve older people with dementia and to be able to show the benefits of involving older people with dementia in dementia research.This paper describes a research plan to explore the involvement of older people with dementia and age-related hearing and/or vision impairment in a European research project investigating the combined impact of dementia with hearing and/or vision impairment...
2018: Research Involvement and Engagement
Caroline Lee, Tom Mellor, Peggye Dilworth-Anderson, Tiffany Young, Carol Brayne, Louise Lafortune
Plain English summary: 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 available to communities, and what are the beliefs and values that influence behaviour. This means that research needs to be carried out close to the people it affects, to better understand context and environment, as well as people's understandings and interpretations of health and health risk...
2018: Research Involvement and Engagement
Lydia Kapiriri
Summary: 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 priority setting in low income countries. This paper fills this gap by identifying and discussing the roles and legitimacy of different stakeholders (including the public and patients) involved in the health research priority setting process in Zambia; identifying the barriers to public participation and proposing improvement strategies...
2018: Research Involvement and Engagement
Bella Starling, Jemma Tanswell
Plain English summary: 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 connect with and get actively involved in health research. We worked with 25 creative young adults at relative socioeconomic, educational and/or health disadvantage in 2016 and 2017. Facilitated by the project leads, the emerging young talents connected with science in a series of culturally- and personally-relevant and creative sessions, culminating in their production of digital content and a one-hour live radio show, which reached at least 2324 people online...
2018: Research Involvement and Engagement
Sue Marks, Elspeth Mathie, Jane Smiddy, Julia Jones, Maria da Silva-Gane
Background: 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 within research studies. There have been calls for more recordings and reflections, specifically on impact. Renal medicine has also had similar criticisms and any reflections on patient and public involvement has usually been from the viewpoint of the researcher. Roles of patient and public involvement can vary greatly from sitting on an Advisory Group to analysing data...
2018: Research Involvement and Engagement
Andrew Skilton, Emma Boswell, Kevin Prince, Priya Francome-Wood, Mariya Moosajee
Plain English summary: 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 years of life. A barrier to the involvement and participation of deafblind people in research is access to information in appropriate formats. The degree of sight and hearing impairment experienced by individuals is variable, so there is not a one size fits all solution...
2018: Research involvement and engagement
Abi Eccles, Carol Bryce, Amadea Turk, Helen Atherton
Plain English summary: 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 is about GP services used by the general public, we wanted to get feedback from people with a broad range of backgrounds and perspectives. However, relying on individuals to firstly want to volunteer and then to take time to travel to and attend such an event, means that involvement may only be attractive to certain people...
2018: Research Involvement and Engagement
Janet Jull, Mark Petticrew, Elizabeth Kristjansson, Manosila Yoganathan, Jennifer Petkovic, Peter Tugwell, Vivian Welch
Background: 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 people get healthcare that is best for them. To better understand the equity impacts of healthcare interventions, a range of people who were potentially the ultimate users of research results were involved in a six-phase project to extend the CONsolidated Standards Of Reporting Trials Statement for health equity ("CONSORT-Equity 2017")...
2018: Research Involvement and Engagement
Lorraine J Breault, Katherine Rittenbach, Kelly Hartle, Robbie Babins-Wagner, Catherine de Beaudrap, Yamile Jasaui, Emily Ardell, Scot E Purdon, Ashton Michael, Ginger Sullivan, Aakai'naimsskai'piiaakii Sharon Ryder Unger, Lorin Vandall-Walker, Brad Necyk, Kiara Krawec, Elizabeth Manafò, Ping Mason-Lai
Plain English summary: 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 depression. The project was modeled after a process developed in the UK by the James Lind Alliance and adapted to fit the Alberta, Canada context. This study describes the processes used to ensure the voices of people with lived experience of depression were integrated throughout the project stages...
2018: Research Involvement and Engagement
Kate Hill, Mags Portman, Zsuzsanna Tabi
Plain English summary: There are new ways to engage people with science and research but many patient support groups and charitable organisations still hold traditional meetings to provide updates on their activities and to report new developments in their field of interest. These meetings often feature presentations given by medical doctors or, in the case of research-focussed organisations, by research scientists.Receiving feedback from people who are confused and sometimes upset by some types of information, and the way it is presented at meetings, made us think about better ways for researchers to discuss their ideas for new research, or share the findings from completed projects, with patients and members of the public...
2018: Research Involvement and Engagement
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