Google search data as a novel adjunct to patient and public involvement in rheumatology research
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Rheumatology INTERNATIONAL
OBSERVATIONAL RESEARCH
Google search data as a novel adjunct to patient and public involvement in rheumatology research Mrinalini Dey1,2 · Sizheng Steven Zhao1,2 Received: 21 August 2020 / Accepted: 5 October 2020 © The Author(s) 2020
Abstract Patient and public involvement is essential in the design and implementation of research studies to ensure research remains relevant and in line with public priorities. Public views on a given area of research may be sought via platforms such as focus groups or surveys. Here, we present the use of an openly available Google search data query tool, which may be used alongside traditional forms of patient and public involvement in research to highlight public perceptions and priorities. We used an online search query tool (“AnswerThePublic.com”) to explore public Google searches relating to “arthritis,” and an exemplar rheumatic disease, “rheumatoid arthritis.” The most common searches relating to these diseases included quality of life, treatment, prognosis, as well as impacts on life, including work. However, they also reveal concerns that may be more difficult to elicit in face-to-face focus groups, such as questions on alcohol consumption in arthritis, and impacts on mental health. Using public search engine data in research, alongside the important traditional methods of patient and public involvement, is a cost-effective and time-efficient method of gauging public views and concerns on a given topic. It may facilitate broad scoping searches of public priorities and help to guide future research questions. Keywords Patient involvement · Rheumatology · Arthritis · Rheumatoid arthritis · Data visualisation · Google
Introduction Patient and public involvement (PPI) is integral to the design and prioritisation of research studies. The National Institute for Health Research (NIHR) defines public involvement in research as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them” [1]. PPI are typically conducted by funders and researchers to prioritise research questions, and offering advice as part of a project steering group. The term ‘public’ denotes a wide range of individuals, including patients, potential patients, carers, people using health and social care services, and those who represent them [1]. It is important to distinguish * Sizheng Steven Zhao [email protected] Mrinalini Dey [email protected] 1
Institute of Life Course and Medical Sciences, University of Liverpool, Brownlow Hill, Liverpool L69 3BX, UK
Department of Rheumatology, Aintree Hospital, Liverpool University Hospitals NHS Foundation Trust, Lower Lane, Liverpool L9 7AL, UK
2
between the views of the public, and those with a professional role in health and social care, especially when considering research design and prioritisation. This facilitates optimal impact and improved enrolment to studies, especially if those with the condition under study are involved from the study’s inception [2]. In the rheuma
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