- Talk, tell, transform
- Coming together
- Working together
- Learning together
- Easy breathing
- Speaking Up
- Dignity and respect
- Getting involved in research
- Working smarter
- Why teach English?
- After the fires
- Dangling conversations
- Sheffield Carers' Voices 2
- NHS Lothian telehealth stories
- In the lead
- Stories from the National Patient Safety Agency
- Telehealth stories
- Stories of recovery from La Trobe University
- MND stories
- NHS Leeds PPI stories
- Sheffield Carers' Voices
- End of Life Care
- Stories from the University of Liverpool
- Stories from the Isle of Wight Stroke Club
- Stories from the University of Nottingham
- Stories from the University of Huddersfield
- Communities of health
- Stories from the NHS Institute for Innovation and Improvement
- Stories from junior doctors in training
- Stories from the Saskatoon Health Region
- Arthur & Co.: Stories about living with Arthritis
- Society of the Holy Child Jesus
- Healing journeys
- Work in Progress
- Caring for vulnerable babies: the reorganisation of neonatal services in England
- Interpreting Tales
- Having a stroke: being a parent
- Stories from Connecting for Health
- Stories from the RCN quality improvement programme
- Carers' Resource, Harrogate, Craven and Airedale
- Stories from the RCN
- Reconnecting with life: stories of life after stroke
- Stories from Pilgrim Projects
- Stories from the Working in Partnership Programme (WiPP)
- Stories from NHS Tayside
- Stories from NEYNL
- Stories from the Heart Improvement Programme
- Charles Bruce's stories
- Grace and Joe Desa's stories
- Alison Ryan's stories
- David Clark's stories
- Emma Allen's stories
- Monica Clarke's stories
- Ian Kramer's stories
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.
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.
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.
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?
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.
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…