Examining the role of patients and citizens in providing evidence for health care research
This module aims to help you appreciate the complexities of 'patient', 'citizen' or 'user' involvement. Health care providers and researchers are increasingly expected to include the perspective of patients and citizens. But what role is the patient or ‘ordinary citizen’ expected to play in the process of generating and applying evidence? What is the nature of the expertise they bring? Who (if anyone) do such individuals represent, and whose voices might go unheard? Increasingly, policy is expected to be evidence-based, and health care providers are expected to demonstrate use of (often very specific kinds of) evidence to support their decision-making. But what counts as evidence – and who decides?
As global communications invite public comment on issues ranging from vaccination to globalisation, what role do different kinds of knowledge, expertise and power play in the generation of evidence and its application? Finally, in the context of a shift towards a molecular and genetic basis for many medical treatments, the module will address the multiple meanings of the terms ‘patient/person-centred’ and ‘personalised’ medicine.
The last date for receipt of complete applications is 5pm Friday 9th February 2024. Regrettably, late applications cannot be accepted.
Course Aims
On completion of this module, we expect our students to be able to:
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Summarise the evidence base for patient and citizen involvement and engagement in the generation and use of health research evidence
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Address the topic of patient and citizen involvement from a critical social science perspective giving consideration to the actors involved and their respective interests
- Critically evaluate the concepts of evidence and expertise in relation to health care and research, applying key theories and models to real examples
Research methods and techniques taught in this module:
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In-depth semi-structured and narrative interviews
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Focus groups
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Participatory research
Examples of case studies to be discussed in this module:
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Involving patients and citizens in biobank governance
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“We the people”: how citizen involvement in implementing the Sustainable Development Goals plays out differently in different cultural and political settings
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The PARADIGM project: an initiative to improve patient and lay involvement in the development and testing of new drugs (especially industry-led clinical trials)