Patients Know Best is an online forum, allowing patients access to their medical records.
With Patients Know Best, you must be invited to join because it is because it's a password protected community with secure information being shared. When patients attend the National Alkaptonuria Centre (NAC), they are invited to join Patients Know Best. This then allows them access to their records from their time at the NAC in Liverpool.
Patients using the site can discuss their results and records from the NAC with the doctors and clinicians they deal with at the Centre, as well as our Patient Support Manager, Lesley. We have received great feedback from patients about this, who feel empowered by being able to access their own test results and records at ease online.
Patients Know Best makes contacting doctors and clinicians easy and quick. Patients using the forum choose who they share their information with, and can change this at anytime.
If you're going to be attending the NAC in Liverpool, you can look forward to joining the forum.
Have a look at the website by clicking the button below.
Our ‘Stand Up to AKU’ comedy night was on Sunday the 9th of June at the Hot Wate.. ...more
The Royal College of Nursing (https://www.rcn.org.uk/) (RCN) Congress is the biggest event o.. ...more
Today’s blog is written by the head of the Brazilian AKU Society (https://www.akubrasi.. ...more
This week's blog is written by AKU Society CEO Nick Sireau. Rare disease research has grown .. ...more