The DECIDE Study

  • Research type

    Research Study

  • Full title

    Decision-Making Capacity in Deciding to Enrol in Research in Psychosis Study

  • IRAS ID

    131319

  • Contact name

    Benjamin Walter Jack Spencer

  • Contact email

    benjamin.spencer@kcl.ac.uk

  • Duration of Study in the UK

    1 years, 8 months, 29 days

  • Research summary

    The ability to make a decision, known as Decision-Making Capacity, can be impaired by psychosis. We do not know how commonly people in hospital with psychosis lack Decision-Making Capacity for Research. Is it safe to recruit in this setting, and how can we ensure that consent to participate in medical research is valid? How can we support people with psychosis to make decisions about medical research?

    The DECIDE Study will look at the ability of people admitted to a psychiatric hospital with psychosis to make a decision about participating in medical research. We know that when people are unwell with psychosis it can affect their ability to make decisions. People may be keen to participate, but excluded because they are assumed by health professionals to be unable to make an informed decision about participation.

    The study will recruit people with psychosis who are unwell in hospital to find out what percentage of people might actually be able to make this decision when unwell and explore the associated features. It will explore patients' and their families' views on the current regulations around research, and possible ways to help people make decisions. Over an 18 month period we will recruit and interview people in hospital with psychosis in South London and Maudsley NHS FT and their family members.

    We will use this information to design a way to support decision-making about research participation, and to develop guidance for Research Ethics Committees, researchers, patients and the public on research participation in people with psychosis. This will help make research more inclusive and relevant to people with psychosis, and ensure it is safe to recruit people for research who are admitted to hospital. This study is funded by an National Institute for Health Research (NIHR) Doctoral Research Fellowship.

  • REC name

    London - Camberwell St Giles Research Ethics Committee

  • REC reference

    15/LO/0427

  • Date of REC Opinion

    13 May 2015

  • REC opinion

    Further Information Favourable Opinion