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Patient Voices: Getting involved in research


Getting involved in research

If patients are to be genuinely involved in the coproduction of care, they must also be involved appropriately, effectively and respectfully in the research that determines the direction of future care. The participation of patients in research programmes is essential to the development and testing of new treatments and processes, but what motivates those that want to get involved? This project aims to facilitate the creation of Patient Voices reflective digital stories that will help to inform potential participants in research, architects of research programmes and the debate on Patient and Public Involvement (PPI) in research. These stories were created in a Patient Voices Reflective digital storytelling workshop in October 2011.

The patient who didn’t die
For a researcher, an article in a scientific journal finally sheds some light on the unlikely survival of a patient in a trial many years ago. This resonates with a remembered phrase from a medical text read in her teens, providing an insight into the wholeness that needs to characterise the researcher’s view of a patient.

At the centre
A long awaited diagnosis of Endometriosis brings with it an unexpected change from being treated as a patient to being treated as a disease. This sends Angela on a journey of investigation and enquiry. As she travels that journey, Angela questions the motivations and drivers behind research, and comes to the conclusion that, to improve the commissioning, quality and relevance of research, she must place herself, the patient, at the centre of the process though her own participation and engagement.

The elephant in the room
Philip, like many patients, would like to be involved in research. But how does he know what research is relevant to him? The supermarkets and online retailers he uses have a profile of him and his interests – could more effective systems match more patients to more trials?

Why research?
Jean is a medical professional, and also a person with Motor Neurone Disease (MND). Whilst this means she knows the seriousness of her condition, it also means that she understands the crucial importance of patient participation in research to advances in understanding and treatment.

Why wait?
Francesco has had three heart attacks. He has become involved in the process of research and an avid follower of the results of research. Why? Because of his parents and grandparents, and for his children and grandchildren.

Want to make your own stories?

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