New Gorlin Syndrome Support Group website launched in Australia.

UK Counselling Directory now added to web links area of website.

Patients Know Best is a website that allows patients to have full access to their medical records while maintaining the records confidentiality. It also allows patients to interact with their doctors through the site. This not only cuts down on the amount of time needed to visit doctors but also allows all specialists involved access to all the patients records.

This should mean that patients are no longer frustrated by having to update their doctors on the progress of their condition and other appointments that they have had. We believe that the website could be very useful to patients who have genetic conditions as many patients have to consult with various specialists who often aren't in communication with each other. It will also offer both clinicians and patients an unobstructed view of the condition enabling them to work more closely together.

The website will contain all the notes that a doctor or patient ever makes about their condition. It also allows the patient to conduct online consultations with any clinician anywhere in the world. So the patient can consult with the specialist in a teaching hospital and feed back the recommendations to their local GP.

The Genetics Alliance UK are supporting the Patients Know Best campaign My Health, My Records which is aimed at getting patients to ask for access to their records.  They believe that this could lead to better care for people suffering from long-term conditions. Patients will also be better informed about their condition and the treatment that they will be undertaking.

It was a pleasure to attend the first meeting of Gorlin Syndrome patients in Newcastle on Wednesday, 16th February 2011.