Patient Voices: A digital library of healthcare stories

It is not always necessary to conduct a randomized controlled trial in order to improve health outcomes, sometimes all you need to do is listen to the right people.  “A very good reason for listening to patients is that we see things that nobody else sees,” says HIV-sufferer Ian Kramer in his short digital story “Another Pair of Eyes”. In his story Ian describes how a nurse who regularly used to take his blood only wore gloves on one occasion – when being observed by a senior nurse.

Ian’s digital story is one of over 250 that form the Patient Voices project. Each story is written by patients, carers or healthcare workers in workshops run by Pilgrim Projects. The aim is to give a voice to those who are sometimes voiceless and has resulted in a rich library of stories.

Many of the stories highlight the global nature of health today. “A World of Difference” is an account of the surprise experienced by British health workers on a maternity ward when they discover that a Somalian woman has been circumcised. And in another story, “Climbing Mountains”, lessons that can be learned from some of the world’s poorest hospitals are highlighted.

Although many of the stories describe negative experiences, others provide hope. Teresa Hamer’s story about her life after a stroke and Marilyn Kramer’s tribute to the care that her son received at the hospice where he died are both positive and moving stories.

One of the most important facets of the project is that the stories are made available through the patient voices website, with the permission of the storytellers, under a creative commons licence. This means that the stories can be used for non-commercial purposes as long as they are not altered in any way and Pilgrim Projects is acknowledged. The library of stories can be viewed online and it is hoped that these powerful stories will be used to bring patient experiences to life.