People with a life-limiting illness are usually positioned as the beneficiaries of the knowledge which comes from research, rather than the creators of it. This is understandable to a degree. A terminal diagnosis brings with it huge demands and there is only so much energy to go round. However, many patients are keen to take a full role in research which may benefit them and those who come after them. It is also fundamental to the development of new palliative care initiatives that the people who experience this care are central to its development.
One of the issues is the reputation research has for only being conducted by the select few. In fact, anyone can be involved in research which changes understanding and practice. A key barrier to this involvement is language. The language of research, with its paradigms and epistemologies and methodologies, can be both confusing and exclusive. At PATCHATT we have therefore developed the Virtuous Circles research model below.
As the name suggests, everything about this model is good! It allows everyone to be involved at every stage, leading to more rigourous and inclusive discoveries. We can all:
Look
carefully and thoughtfully at an issue and how it affects people; look at what other people have said and done about it
Learn
about the issue by gathering, analysing and interpreting information about it
Innovate
by using what we learn in a new way to change how people think, what they know and what they do
Improve
things for the people at the centre of our research - check that the new way of thinking, knowing and doing is beneficial for them.
Do let us know if you would like to join us on a next research project! We would love to have your expertise.
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