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  1. Planning ahead for research participation: survey of public and professional stakeholders’ views about the acceptability and feasibility of advance research planning.Victoria Shepherd, Kerenza Hood & Fiona Wood - 2023 - BMC Medical Ethics 24 (1):1-11.
    Background Anticipatory planning in the UK focuses on supporting people who anticipate periods of impaired capacity to express their wishes about future care through processes such as advance care planning. Other countries have extended anticipatory planning to include processes for people to prospectively express their preferences about research participation. Advance research planning (ARP) is thought to extend autonomy and ensure that ‘proxy’ decisions about research are based on their wishes and preferences. Methods A cross-sectional survey was conducted with two stakeholder (...)
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  • ‘It’s not making a decision, it’s prompting the discussions’: a qualitative study exploring stakeholders’ views on the acceptability and feasibility of advance research planning (CONSULT-ADVANCE).Victoria Shepherd, Kerenza Hood & Fiona Wood - 2024 - BMC Medical Ethics 25 (1):1-23.
    Background Health and care research involving people who lack capacity to consent requires an alternative decision maker to decide whether they participate or not based on their ‘presumed will’. However, this is often unknown. Advance research planning (ARP) is a process for people who anticipate periods of impaired capacity to prospectively express their preferences about research participation and identify who they wish to be involved in future decisions. This may help to extend individuals’ autonomy by ensuring that proxy decisions are (...)
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