Action for ME is starting a pilot for PKB with patients with ME (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome (CFS). They began the work with a consultation of their members, a great example of why it is so great to have charities lead on our work with clinicians. Genetic Alliance UK had recommended using PKB to its member charities a few years ago. A disease charity teaches the clinicians at centres of excellent exactly why it is so important for their patients to be in control of their records, raising quality, reducing costs and increasing happiness.
Here is an extract from the Action for ME’s explanation:
We are developing a pilot project with adult specialist services in Newcastle, Liverpool and Bristol to test and develop an innovative web-based care record system that will be completely patient-centred in a way that doesn’t currently exist.
This project‘s guiding principle is that patients have control, they are listened to and are seen as an active partner in their own care. Patients are in charge of their own records which is very different from the normal relationship that most people, including those with M.E., experience despite the developments with patient-centred care. The software we will use is called Patients Know Best and has been tried and tested with a range of health and social care providers, such as Great Ormond Street Hospital, but has not been used with people with M.E.
It is well worth reading the full post.