We started Patient Opinion because we thought that it would be great way to aggregate and direct the collective wisdom of patients and carers. Then we realised that it was better to think of Patient Opinion as a way to create thousands of transparent, structured conversations between patients and providers with us acting as a giant switch board getting stories and responses to just the right people.
But sitting in my GP’s chair, a final lesson emerges in all this: The power to tell and re-tell the story of illness is part of how we all make sense of the meaningless depredations of disease. Telling your story on the web offers, for those that want it, new ways to do this: Our son was just twelve days old when he died. Throughout this distressing time the staff on the Neonatal Unit were outstanding. They treated him with dignity throughout his short life..… the staff made us feel that his life was as significant to them as it was to us. Nurse Jan made a print of his feet and hands and put them together in a card with some clippings of his hair. On Father’s Day there was some chocolate for me that was labelled from him. (Full posting) The telling of such stories, the ability to speak even whilst grieving, has therapeutic benefits.
Add the promise that by sharing what you have learnt you might be able to help improve a small part of the world for everyone and the sick are offered that most precious thing, the possibility of themselves being needed for their insights, of giving some thing back to the community of the well, just at the moment when they feel at their most powerless. That the new forms of web-based voice can go beyond the passivity of suffering, and begin to make sense of what had previously been meaningless is perhaps their greatest promise: ‘Mum’s illness was awful but we helped change things for everyone!’
The act of helping others is consoling because it reconnects us at a time when we are at our most alone. For the first time improving services can be driven by the intrinsic desire to find meaning within the experience of disease. Multiplied by the hundred thousand as only the web can, these transparent, directed dialogues move us beyond exit and voice and offer new glimpses of redemption in a post-market world.