Stem cell research: the role of information seeking and scanning

Nelissen, Sara; Bulck, Jan Van den; Lemal, Marijke; Beullens, Kathleen

doi:10.1111/hir.12160

Cited by 3 publications

(10 citation statements)

References 25 publications

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“…Twenty-four of these papers related specifically to cell therapy while 11 pertained to gene therapy. Five of the included studies were conducted in the UK [12][13][14][15][16] , eight in the USA [17][18][19][20][21][22][23][24] , six in Canada [25][26][27][28][29][30] , two were conducted in Australia 31,32 and one each from Belgium 33 , China 34 , Germany 35 , Hungary 36 , Ireland 37 , Japan 38 , Korea 39 , South Korea 40 and Sweden 41 . One study included multiple countries across Europe 42 , three studies were set in Canada and USA [43][44][45] and one included Europe, USA and Canada 46 .…”

Section: Resultsmentioning

confidence: 99%

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Patient and public perspectives on cell and gene therapies: a systematic review

Aiyegbusi

Macpherson

Elston³

et al. 2020

Nat Commun

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Cell and gene therapies offer opportunities for treating disease with potential to restore function, and cure disease. However, they are not without risk and pose complex logistical, economic, ethical and social challenges for health systems. Here we report our systematic review of the current evidence on patient and public knowledge and perspectives of cell and gene therapies, to inform future research, education and awareness raising activities. We screened 10,735 titles and abstracts, and evaluated the full texts of 151 publications. The final selection was 35 publications. Four themes were generated from the narrative synthesis of the study findings namely: (1) Knowledge and understanding of cell and gene therapies, (2) Acceptance of cell and gene therapies (3) Understanding of risk and benefits of therapy, and (4) Information needs and current sources of information. As potential funders or future recipients, it is important that the public and patients are aware of these therapies, understand the issues involved, and can contribute to the debate. This review highlights the need for appropriate patient and public education on the various aspects of cell and gene therapies. High quality studies exploring patient and public opinions and experiences of cell and gene therapy are required. Patient and public perceptions of these therapies, alongside evidence of clinical and cost-effectiveness, will be central to their uptake and use.

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Section: Resultsmentioning

confidence: 99%

“…Knowledge and understanding of cell and gene therapies. The studies reported varying levels of patient knowledge and understanding of cell and gene therapies 13,19,23,31,33,40,41 . Studies in patients with ischaemic stroke, cystic fibrosis and sickle cell anaemia found that they had limited prior knowledge of cell and gene therapy 13,23,40,41 .…”

Section: Resultsmentioning

confidence: 99%

Patient and public perspectives on cell and gene therapies: a systematic review

Aiyegbusi

Macpherson

Elston³

et al. 2020

Nat Commun

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“…The impact of information, or lack of access to information, were issues of concern in studies conducted by Nelissen et al . and Rose et al .…”

Section: In This Issue…mentioning

confidence: 99%

“…In their standardised cross‐sectional survey of 621 cancer‐diagnosed and 1387 non‐diagnosed individuals, Nelissen et al. investigated patterns of knowledge acquisition and its impact on knowledge and perspectives of stem cell research . Similar view points were expressed by both populations concerning societal benefit, research evaluation and morality with the acquisition of information, both intentional and unintentional, positively related to stem cell knowledge and perspectives.…”

Section: In This Issue…mentioning

confidence: 99%

“…The impact of information, or lack of access to information, were issues of concern in studies conducted by Nelissen et al 3 and Rose et al 4 In their standardised cross-sectional survey of 621 cancer-diagnosed and 1387 non-diagnosed individuals, Nelissen et al investigated patterns of knowledge acquisition and its impact on knowledge and perspectives of stem cell research. 3 Similar view points were expressed by both populations concerning societal benefit, research evaluation and morality with the acquisition of information, both intentional and unintentional, positively related to stem cell knowledge and perspectives. The lack of information targeted at parents of those most likely to be infected with HIV was the focus of Rose et al's study.…”

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confidence: 99%

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Learning to write through reading

Grant

2016

Health Info Libraries J

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Narrowing the gap between what we want to achieve as writings - publishing a report of our project - and what we achieve as readers - finding a study to inform our practice - can be challenging. One solution in enabling us to achieve this goal is to learn from close reading the writing of others, including writing in development. Close reading, appraisal in its broadest term, encourages us to articulate what we, putting us in touch with how an author has organised information, selected their words and structured their arguments.

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A Scoping Review of Patient and Public Perspectives on Cell and Gene Therapies

Macpherson

Aiyegbusi

Elston³

et al. 2021

Regen. Med.

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Aim: The development and introduction of cell and gene therapies presents complex social and economic issues. Fully addressing these challenges requires engagement with patients and the public. Materials & methods: A systematically conducted scoping review was undertaken to gauge current patient and public knowledge and perspectives, and as such inform requirements for future research, education and engagement activities. Results: A heterogeneous collection of 35 studies were identified. Levels of knowledge among patients and the public were extremely variable. Studies indicated general acceptance of therapies. Conclusion: The review identified the need for tailored educational activities, and in particular the importance of addressing misconceptions. There is also a need for robust qualitative research considering perspectives on current and forthcoming licensed therapies.

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Stem cell research: the role of information seeking and scanning

Cited by 3 publications

References 25 publications

Patient and public perspectives on cell and gene therapies: a systematic review

Patient and public perspectives on cell and gene therapies: a systematic review

Learning to write through reading

A Scoping Review of Patient and Public Perspectives on Cell and Gene Therapies

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