Have you heard of "Patients Like Me" ?

[Miss-A-V-P]

Hi everyone,

I haven't had much time to blog over the previous months. I was travelling and spending some time in Asia. I spent 2 weeks in Japan, where I attended a healthcare technology conference. I came across a company called "Patients like me".

patientslikeme.com/about

They have created an interactive community where patients from all walks of life can subscribe and meet like minded people who are going through the same experiences as You and I.

I am going to join up. Please feel free to do so. Some may be worried, that you are exposing too much personal data into cyberspace. If anyone wants more information, I am happy to share the ethos behind the site and what I learnt from the conference (alternatively please take a look at the website).

I also managed to interact with the senior team at Patients like me, they are exploring introducing this to the NHS. If enough of us are interested, maybe I can set up a webinar for them to talk to us more?

Background

The community works by patients being open about their concerns/experiences/symptoms. The data is then structured into a format that can help Doctors/Pharma companies/Researchers look after us better.

One of the take home messages I have kept with me, was that the "patients" are fast becoming the experts, especially those who have long term conditions.

In order for healthcare to keep up with the modern world, there is a need for collaboration between patients and doctors. The world wide web, means data is available to patients alot quicker.

I for one am happy to share experiences and my medical history, if it can help bring better treatments for other patients.

Please feel free to research further (or ignore, if this is too intrusive). I just wanted to share something from my travels.

Anjana

[Miss-A-V-P]

Just attaching the Tedmed talk given by the founder. Great oversight of the history: ted.com/talks/jamie_heywood...

[AlisonOC]

I think that sounds excellent. I totally agree that patients (and families to a degree) are the experts on their condition. My husband had a transplant 18 months ago and we frequently feel confused by symptoms and isolated too. I will read this site and get back to you.

Best wishes