Journal of evaluation in clinical practice
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The overall aim of this paper is to provide practical insight into the way that professionals caring for a person with motor neurone disease (MND) can recognise, respect and respond to that person's temporality; that is, the person that they have been, that they are now and that they will be in the future. ⋯ We suggest MND has a significant impact on a person's lifeworld. The proposed person-centred care model focuses on understanding (interpreting) a person in a wider temporal frame and beyond the context of their illness. The expected collaborative outcomes are that: a person is acknowledged as more than a 'patient with MND' and that a professional is providing person-centred care based on individuality of the person, through a temporal lens. This requires a collaborative approach between the person, others and professionals. Such person-centred care, focused on individuality, may prevent a person experiencing life in crisis and suffering towards the end of life.
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Contemporary person-centred healthcare and professional education operates within an interconnected and rapidly changing world of challenge and opportunity in the development of curricula that reflect practice. In times characterised by change and uncertainty, with increasing opportunities for networking and collaboration, educational curricula with an emphasis on 'process' rather than a more traditional, mechanistic emphasis on 'product', would seem appropriate in looking towards the future. Learning and emergent professional identity occurs through individuals' social definitions in turn influenced by knowledge and power relationships. ⋯ By way of example, a co-produced module of study within a preregistration MSc Physiotherapy programme is highlighted. Students identify, develop, and design small-group projects working with 'Physiopedia'. Thus, projects hold the potential to contribute to a global educational forum as well as student dialogue for learning.
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Patient-oriented research (POR) is a trend that has emerged over several decades and is particularly prominent in Canada, the United States and the United Kingdom. It involves patient and other stakeholder participation in the planning, conduct and dissemination of biomedical and health services research and it can be seen as a form of public participation and engagement in activities that affect the lives and well-being of communities. Criticisms of POR revolve around its susceptibility to tokenistic treatment of patient participants and paternalistic dominance of the research agenda by professional researchers, academics and clinicians. ⋯ It will explore the interface between POR, community activism and community-based participatory research. The contextual importance of the COVID-19 pandemic experience is stressed. The commentary will particularly focus on the US-based Patient Centred Outcomes Research Institute, its origins within a movement to enhance emphasis on publicly funded comparative effectiveness research, and its more recent evolution in the direction of community empowerment in POR.