@article{5e1efee6c0f045b781cfc1aadc8fd313,
title = "{\textquoteleft}Language has been granted too much power{\textquoteright}.1,p.1 Challenging the power of words with time and flexibility in the precommencement stage of research involving those with cognitive impairment",
abstract = "Meaningful and inclusive involvement of all people affected by research in the design, management and dissemination of that research requires skills, time, flexibility and resources. There continue to be research practices that create implicit and explicit exclusion of some members of the public who may be {\textquoteleft}seldom heard{\textquoteright} or {\textquoteleft}frequently ignored{\textquoteright}. Our focus is particularly on the involvement of people living with cognitive impairment, including people with one of the many forms of dementia and people with learning disabilities. We reflect especially on issues relating to the precommencement stage of research. We suggest that despite pockets of creative good practice, research culture remains a distinct habitus that continues to privilege cognition and articulacy in numerous ways. We argue that in perpetuating this system, some researchers and the institutions that govern research are committing a form of bureaucratic violence. We call for a reimagining of the models of research governance, funding and processes to incorporate the time and flexibility that are essential for meaningful involved research, particularly at the precommencement stage. Only then will academic health and social science research that is truly collaborative, engaged, accessible and inclusive be commonplace. Public and Patient Contribution: This viewpoint article was written by a research network of academics with substantial experience in undertaking and researching patient and public involvement and codesign work with representatives of the public and patients right across the health system. Our work guided the focus of this viewpoint as we reflected on our experiences.",
keywords = "cognitive impairment, inclusion, public and patient involvement, research culture, seldom heard",
author = "Louise Locock and Deirdre O'Donnell and Sarah Donnelly and Liz Ellis and Thilo Kroll and Sh{\'e}, {{\'E}id{\'i}n N.{\'i}.} and Sara Ryan",
note = "Funding Information: This study/project was funded by UK Research and Innovation-Economic and Social Research Council and the Irish Research Council under the {\textquoteleft}ESRC-IRC UK-Ireland Networking Grants{\textquoteright} (Grant numbers ES/V006371/1 and IRC/V006371/1). The authors are very grateful to all the public and patient partner groups that we work with and that we consulted with to inform our discussions and this viewpoint. {\textcopyright} 2022 The Authors Funding Information: At the heart of this issue is the written and spoken culture of research. Research and the preparation of research grant applications is an inherently wordy process. To meet funding requirements, lengthy and often quite technical forms need to be prepared. This poses potential challenges for many people who are unfamiliar with research practices; the difficulties of impenetrable, technical jargon and burdensome paperwork are well documented. Lay summaries may make the content of research applications and protocols more accessible to a wider audience, but do not replace the need for written detail. These wordy research practices can be doubly exclusionary for people who experience issues around memory, reading, comprehension or thinking. As Barad, quoted in the title for this viewpoint, argues {\textquoteleft}Language has been granted too much power{\textquoteright}. This form of power perpetuates the further marginalization of those voices it is important to hear. This might be considered a form of epistemic injustice, whereby the ways of communicating knowledge and experience by one group of people are rendered inadmissible or ineligible by the practices of another. 16 1 ,p.1 17,18 Funding Information: This viewpoint summarizes the discussions of a network of researchers from Ireland, Scotland and England with a track record in undertaking coresearch/design and researching patient and public involvement (PPI), particularly with people living with cognitive impairment, including people with one of the many forms of dementia and people with learning disabilities. This network was funded as part of a joint programme between the UK Economic and Social Research Council and the Irish Research Council. This grant aimed at fostering social science networks between the United Kingdom and Ireland. Publisher Copyright: {\textcopyright} 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd.",
year = "2022",
month = sep,
day = "12",
doi = "10.1111/hex.13576",
language = "English",
volume = "25",
pages = "2609--2613",
journal = "Health Expectations",
issn = "1369-6513",
publisher = "Wiley-Blackwell",
number = "6",
}