Learning from experience
02 December 2007
Health professionals are increasingly attempting to understand illness from the patient’s perspective. All the presenters during the Sunday session of the 18th International Symposium agreed that making use of illness narratives is one way of becoming more informed about the personal experience of living with illness.
Narrative research, where people with MND are encouraged to tell their stories, can elucidate issues previously overlooked in biomedical approaches to disease management said Janice Brown from the University of Southampton.
Indeed knowing how people live or manage coping with MND is essential knowledge for developing approaches to enhance quality of life and patient self-management.
However learning from people’s own experiences is not just for healthcare professionals. Increasingly people with MND are swapping information with each other and an increasing number of patients are using the internet as a source of information about their condition.
In one of the sessions Dr Paul Wicks talked about the website, PatientsLikeMe and the impact it has had on patient empowerment and knowledge sharing.
The site allows people with MND to share their experiences in the traditional way, but in addition contains elements of social networking and sophisticated features for tracking their symptom severity, medication usage, and use of assistive technology. PatientsLikeMe has recently developed a fully-featured research module which allows them to carry out surveys and develop new instruments.
Sarah Ezekiel joined PatientsLikeMe in December 2006: “It's been an invaluable source of information and advice ever since. I visit the forum every day and really appreciate the warm and friendly support system from patients, carers and the admin team.
"I'm able to see what medication and treatments other patients use and access their effectiveness. MND can make me feel very isolated and PLM certainly goes a long way to help with that. It's my top rated website!”
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Notes to editors
The 18th International Symposium on ALS/MND is taking place in Toronto, Canada, between Saturday 1 and Monday 3 December. The event is organised by the UK-based Motor Neurone Disease (MND) Association and hosted this year by the ALS Society of Canada.
