Re: Patient powered health
I read with interest your article today about patient powered health. Whilst I am absolutely delighted that you have highlighted this matter I am really disappointed that you chose an American as your example instead of some of the fantastic patients in the UK. I am no different to a number of e-patients in the UK but perhaps my own story highlights the progress being made here.
I was diagnosed aged 12 with the inflammatory bowel disease known as Crohn’s and after 25 operations and intestinal failure I became only the 11th person to undergo a rare small bowel transplant in the UK at The Churchill Hospital in Oxford. In the build up to transplant there was no information out there about this surgery. All I knew was that it was 15 hrs and many didn’t recover. I therefore started a blog as a way of telling friends and family what was happening. 15 months later and my blog http://beingapatient.blogspot.com has around 60,000 readers including transplant teams around the world, medical students and patients and their families.
From the blog I then used social media to grow peer to peer interaction and to build patient engagement. That has led me to building online virtual communities for around 12,000 patients, become a speaker and have several articles published. I now write an implement digital patient engagement strategies for a couple of NHS trusts and also now some CCGS.
I don’t say any of this my way of trying to boast so please do not take it that way. I simply write to say that patients like me are helping to lead the way here in the UK. I also use digital technologies to communicate with my transplant team. I text images of wound issues, have skype chats and use twitter and linkedIn on a weekly basis to share my own information with my team. This means that when we do meet they are in possession of all the facts and my treatment is planned and focused. It saves the medical guys time and money. I am lucky that my transplant team are sensational but these tools are being rolled out and I and other patients are helping to show the way.
As I said at the beginning thank you for writing the article but actually the US could learn from the UK as well.
I hope that this information has been of use to you.
Competing interests: No competing interests