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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
Tracey McConnell, Paul Best, Gavin Davidson, Tom McEneaney, Cherry Cantrell, Mark Tully
Plain English summary: Co-producing research with members of the public is increasingly recognised as a valuable process. Yet, despite these good intentions, the literature on coproduction has struggled to keep pace with the coproduction 'movement'. There is a lack of clarity regarding acceptable levels of involvement and attempts at standardising approaches appear generic and lack detail. Moreover, relatively little research has captured the views of all the parties involved (academics, service providers and service users)...
2018: Research Involvement and Engagement
Julie Haesebaert, Isabelle Samson, Hélène Lee-Gosselin, Sabrina Guay-Bélanger, Jean-François Proteau, Guy Drouin, Chantal Guimont, Luc Vigneault, Annie Poirier, Priscille-Nice Sanon, Geneviève Roch, Marie-Ève Poitras, Annie LeBlanc, France Légaré
Plain English summary: Making primary care clinics more patient-centered is key to improving patients' experience of care. If patients themselves were engaged in helping define priorities and suggesting quality improvements in the clinic, care would respond better to their needs. However, patient engagement is a new phenomenon, particularly in community based primary care clinics. How to engage patients in quality improvement in these clinics, or what effect this might have, is not well known...
2018: Research Involvement and Engagement
S Dixon, K Agha, F Ali, L El-Hindi, B Kelly, L Locock, N Otoo-Oyortey, S Penny, E Plugge, L Hinton
Background: Female Genital Mutilation (FGM) is all practices involving cutting, alteration or injury to the female genitalia for non-medical reasons. It is a form of violence against women and children, with no benefits and many harms. In 2014, the UK Government committed to working to eliminate FGM. Steps taken towards this aim included creation of educational and safeguarding resources for professionals, and legislative changes including a mandatory reporting duty for professionals in England and Wales (where if a girl under 18 discloses or is found on examination to have FGM then the professional is mandated to report this to the police), and an FGM Enhanced Dataset applicable to NHS organisations in England requiring the submission of personal data about women and girls who have had FGM to NHS Digital...
2018: Research Involvement and Engagement
Sophie Staniszewska, Richard Stephens, Ella Flemyng
Plain English summary: Peer review is a well-established part of academic publishing. Its function is to assess the quality of a manuscript before publication in a journal. Research involvement and Engagement is the world's first co-produced journal dedicated to developing the evidence base of patient and public involvement and engagement in health and social care research. Alongside traditional academic peer review we also involve other key stakeholders, including patients, carers, the public, policy makers, funders and practitioners...
2018: Research Involvement and Engagement
Anna Maria Chudyk, Celeste Waldman, Tara Horrill, Lisa Demczuk, Carolyn Shimmin, Roger Stoddard, Serena Hickes, Annette S H Schultz
Plain English summary: Patient engagement in research is an emerging approach that involves active and meaningful collaboration between researchers and patients throughout all phases of a project, including planning, data collection and analysis, and sharing of findings. To better understand the core features (elements) that underlie patient engagement, it is useful to have a look at models and frameworks that guide its conduct. Therefore, this manuscript aims to present a protocol for a scoping review of models and frameworks of patient engagement in health services research...
2018: Research Involvement and Engagement
Maarten de Wit, Truus Teunissen, Lieke van Houtum, Margriet Weide
Background: Health-research funding organizations are increasingly involving patient representatives in the assessment of grant applications. However, there is no consensus on an appropriate scope or definition of the patient perspective and the eligibility of potential patient reviewers to take on this role. The aim of our study is to develop a consensus-based template for patient reviewers to assess research grant applications from the patients' perspective. We also defined a glossary of terms and definitions to help the patient reviewers in their assessment role...
2018: Research Involvement and Engagement
Clara R Jørgensen, Nanna B Eskildsen, Anna T Johnsen
Background: This paper reports on the process of involving former and current cancer patients and carers as co-researchers in a Danish mixed methods research project on patient empowerment of cancer patients in follow up (The Empowerment study 2015-2019). User-Involvement in health care research is a relatively new practice in Denmark and the Empowerment project was one of the first to systematically involve patients and carers in its research design, conduct and reporting. The paper has two aims: first, it provides a detailed account of the process of involving co-researchers in the Empowerment project and second, it presents findings from a workshop held with academic researchers and co-researchers on the project to discuss their experiences and recommendations for user-involvement in the Danish context...
2018: Research Involvement and Engagement
Eva Rames Nissen, Vibeke Bregnballe, Mimi Yung Mehlsen, Anne Kathrine Østerby Muldbjerg, Maja O'Connor, Kirsten Elisabeth Lomborg
Plain English summary: The aim of this paper is to present our experiences from a shared working group (SWG) with patient representatives and researchers. The SWG collaborated on developing a psychosocial cancer rehabilitation intervention for women treated for breast cancer and men treated for prostate cancer and on the planning of an effect study of this intervention.The SWG included five patient representatives (three women treated for breast cancer and two men treated for prostate cancer), four researchers and a research assistant...
2018: Research Involvement and Engagement
Andrea C Bishop, Meghan J Elliott, Christine Cassidy
Plain English summary: As knowledge translation trainee participants, we report on the discussions that took place during the 2017 Knowledge Translation Canada Summer Institute. The theme of the institute was patient-oriented research and patient engagement in research. Trying to move knowledge into health care practice can be difficult. Including patients and families as members of the research team can help to overcome some of these challenges by producing more relevant research designs and results...
2018: Research Involvement and Engagement
Peter Selby, Galina Velikova
Plain English summary: Roger Wilson challenged cancer professionals in research and care to place the patient perspective and patient reported outcome measures centre stage. The ability to collect information from patients using structured questionnaires (known as Patient Reported Outcome Measures or PROMs) which ask about clinical issues (such as disease symptoms or treatment side-effects) as well as social, emotional and psychological issues has existed for 40 years. They provide a powerful way of working out whether an aspect of diagnosis or treatment for cancer is bringing real benefits to patients that can be measured using these structured questionnaires...
2018: Research Involvement and Engagement
Leona M Batten, Indrani Subarna Bhattacharya, Laura Moretti, Joanne S Haviland, Marie A Emson, Sarah E Miller, Monica Jefford, Mairead MacKenzie, Maggie Wilcox, Marie Hyslop, Rachel Todd, Claire F Snowdon, Judith M Bliss
Plain English summary: Breast cancer is a diverse and varied disease. Recent research has shown that the collection of multiple biopsies before surgery can help researchers determine how the cancer is responding to treatment and can predict for long-term outcomes. However biopsies can be uncomfortable, and sometimes clinicians and research teams in hospitals may be reluctant to offer clinical trials requiring several biopsies to patients who have been recently diagnosed with breast cancer...
2018: Research Involvement and Engagement
Laura B Mader, Tess Harris, Sabine Kläger, Ian B Wilkinson, Thomas F Hiemstra
Plain English Summary: Patients usually understand their disease and lifestyle needs better than many medical professionals. They also have important ideas about what research would be most beneficial to their lives, especially on how to manage symptoms in a way that improves daily quality of life. In the UK, the National Institute for Health Research has recognised the value of patient insight, and now requires researchers with public funding to involve patients and the public throughout the research process...
2018: Research Involvement and Engagement
Michelle Phoenix, Tram Nguyen, Stephen J Gentles, Sandra VanderKaay, Andrea Cross, Linda Nguyen
Plain English summary: In Canada, and internationally, there is an increased demand for patient engagement in health care research. Patients are being involved throughout the research process in a variety of roles that extend beyond the traditional passive participant role. These practices, referred to collectively as 'patient engagement', have raised questions about how to engage patients in the research process. Specifically, researchers have noted a lack of theory underpinning patient engagement and are looking for guidance on how to select patients and engage patients throughout the research process...
2018: Research Involvement and Engagement
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