Public Service have featured the announcement of St Mark’s Hospital becoming a Patients Know Best customer by publishing an editorial by me about our work. It is a pleasure and a privilege to work with the intestinal failure team at St Mark’s, the country’s top centre in this field. I met the consultant Dr Gabe back in 2011 when a Great Ormond Street Hospital patient shared her records with him as part of her transition to adult services. Shortly afterwards, St Mark’s began testing out PKB with all of its intestinal failure patients, and earlier this year they were highlighted by the Patient Information Forum for providing the highest levels of personal health records. You can watch videos of Dr Gabe and one of his patients talking about how they use PKB.
It’s time the patient told the doctor what was wrong
15 August 2012
Patients know how their condition affects them, what doctors have said, what appointments have achieved, what has been prescribed, so it makes sense that they should be able to take their entire medical history with them wherever they go, writes Dr Mohammad Al’Ubaydli
Today, there’s a quiet revolution happening in the way patients and medical professionals communicate, interact and relate to each other. More than ever before, medical professionals are realising the benefits of putting the patient at the centre of their own healthcare. They are realising there are benefits for patients, for clinicians and for the NHS as a whole.
In reality, the patient has always been at the centre of their own healthcare – something I know only too well. I have a rare – one in a million – genetic medical condition that means that I receive help from multiple specialist clinical teams in a range of clinical settings. If I get an infection and see a GP out of hours – who will not know me or understand my condition – the GP is often worried about how best to treat me.
So, to help both them and myself, I tell them what drugs I am currently prescribed, which antibiotics work best, and which doses to use. I can tell them – not because I am a doctor but because I am the patient, the one who knows my condition the best. I am the one who knows what all the different experts treating me have said. I am the one who has been to all the appointments. I am the one who knows what different doctors have prescribed – what’s worked well before and what hasn’t worked so well. I am the one who is best placed to join all the dots and it’s around this principle that Patients Know Best, the world’s first and only fully patient controlled medical records system, was developed. Patient Knows Best puts the patient back at the heart of their own healthcare management and is today being used by hospitals, insurance companies, research companies and other medical institutions across the world.
One such hospital is St Marks, Harrow, a London-based hospital that also houses one of two national Intestinal Failure Units (IFUs) in the UK which specialise in treating highly complex gut problems. St Marks has been using Patients Know Best since April 2012 and is, according to Dr Simon Gabe, consultant gastroenterologist at St Mark’s, a “very real development for patient care”.
A first for St Marks, our project involves patients with severe intestinal failure using Patients Know Best to enable closer collaboration between the different specialist teams treating them – teams located in hospitals across the UK. Patients’ intestinal conditions are often highly complex in nature, requiring frequent hospital visits and treatment by a range of different clinical teams. Patients are not normally local to St Marks Hospital and may come from anywhere in the country. Using this system, patients are also able to access their test results immediately – saving both the patient and clinician time.
Operating like a secure medical ‘Facebook’ and available over any internet-ready device, Patients Know Best enables the patient to decide which medical professionals can have access to their medical history. It allows patients to communicate directly with clinicians via a highly secure messaging system and through a notice board facility where issues can be discussed collaboratively between the patient and their clinical teams – teams that could exist anywhere in the world. Patients Know Best also enables St Marks patients to record and track their condition and post results up immediately – giving clinicians a view as to how a patient is living with their condition over time. For example, a patient can post up regular readings of their blood levels so all their doctors can access the results and update the prescriptions based on the latest data.
One of the side effects of a patient with a severe gut problem can be that they experience problems in other areas of the body. This involves them having to consult a range of clinicians who are most likely treating their condition for the first time. However, Patients Know Best now gives them the confidence and reassurance they need that doctors can access their full medical history – wherever they might be. Sometimes, patients can have severe and potentially life threatening reactions to everyday drugs but with our system, they can be reassured that they can reach their entire medical team – in effect they are carrying their entire medical history with them wherever they go in the world.
Dr Mohammad Al’Ubaydli is founder and CEO of Patients Know Best