With PKB, each patient gets all their records from all their clinicians - GP and hospital, NHS and non-NHS, UK and non-UK - and controls who gets access to these records. The patient can also conduct online consultations with any member of their clinical team, receive automated explanations of their results, and work with clinicians for a personalized care plan.
PKB is already used by clinicians at Great Ormond Street Hospital, UCL Hospital, Torbay Hospital, and others, along with GPs and community nurses from across the country who are responding to patients' invitations.
It is vital that patients control the access rather than being tied to their GP's system. Otherwise, all they can do is read the GP's records, they cannot join these up with records from hospitals (this will get worse if each of these hospitals sets up their own web site) and they cannot control who uses these records.
This control is a human right.
It was summed up by a patient on the Guardian:
"I was diagnosed with type 2 diabetes on 14 May 2009, my dad's birthday. I didn't mention it when I called him to wish him all the best. Type 2 makes you feel so alone because your first thought is, "I have done this to myself". It's embarrassing. Subsequently the information you are given about genetics and evolutionary biology give you an argument about why it isn't all your own fault. You get angry at the supermarkets and restaurants that have thrived on your illiteracy about food, but you can never shake the knowledge that if you watched what you ate and did more exercise, you wouldn't have it.
"Doctors tell you to self-manage diabetes, but the tools to make it easier aren't available. I want a single secure place, online, to store all my information about my condition. I want to know what my previous HBa1c (long-term blood sugar tests) and cholesterol levels are. I want to know when my last eye appointment was and reminders for the next one, and I want the GPs to be able to see this too so I don't have to keep pissing around with new prescriptions for the same drugs that they keep getting wrong.
"The lack of co-ordination is staggering. I want to control my information and I can't. The current system makes my life harder, not easier. I can understand the frustration that drives people who are already depressed and alone to take drastic measures. Give me access to my data in usable electronic form and I will use it better than the NHS."
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