Did you receive a letter from Genetic Alliance UK? Welcome to Patients Know Best

On Tuesday, Genetic Alliance UK sent out a letter to all its member charities. It is a real pleasure to start working with patient charities across the UK to teach patients about the importance of asking for and reading their medical records. So far, Cure Parkinson’s, European Federation of Neurology Associations, Thalidomide Trust, Rare Disease UK and Genetic Alliance UK have backed our My Health, My Records campaign. We are grateful that Genetic Alliance is adding others by telling their member charities.

If you are from such a charity: welcome to Patients Know Best. We look forward to working with you.

Dear Members,

Recently we have been talking to Dr. Mohammad Al-Ubaydli who is the CEO of Patients Know Best. I’m sure some of you have met him and have heard about the new service that he is offering.

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.

We are supporting the Patients Know Best campaign My Health, My Records which is aimed at getting patients to ask for access to their records. We 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.

If you would like to know more about either you can contact Dr Mohammad Al-Ubaydli

If you would like to contact us about working with Patients Know Best, click this way. We love to help.


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