Do not offer' ↓↓Risks of the intervention outweigh the benefits; most patients would not choose the intervention while only a small proportion would; for clinicians, most of their patients would not receive the intervention

Patients have extensive experience of their disease that can enhance the design and execution of research leading to significant innovations and efficiencies in the research process. The research community on the whole have been slow to adopt practices that enable patients to become active partners in research. Digital technologies are providing the means to do this more easily and so are increasingly being used to interact with patients and involve them in the design and execution of research. The RUDY (Rare UK Diseases of bone, joints and blood vessels) study’s pioneering approach applies a custom-developed electronic platform where patients can contribute information over time about their disease experience, lifestyle and clinical history. This is combined with a state-of-the-art Dynamic Consent model and a commitment to patient-driven research, to further our understanding of rare diseases. This paper describes the RUDY study and the benefits that have been gained from adopting this partnership approach to research.

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It seems certain that achieving the scale of change in the production of the built environment necessary to save the world from the threat of rapid global warming, and consequent climate shocks, will require profound institutional change over a range of policy domains. Such change must encompass more than organizational structures, and includes a change in assumptive worlds and embedded funding programmes. The institutional momentum behind existing policies is strong. Policies are produced in a manner that can be described as 'path dependent'. In this paper, we argue for a multivalent conception of path dependence containing three interwoven strands: technical, institutional, and discursive path dependence. The empirical focus of this paper is the discursive aspect of path dependence in transport planning with reference to research in Melbourne, Australia.

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