Patients Know Best

I’d like to introduce you to a social entrepreneur. He’s called Dr Mohammad Al-Ubaydli and has a rare disease. He’s also a physician and a programmer.

And he’s the founder of Patients Know Best.

I first met him three years ago, through an introduction from my brother. Mohammad’s based in Cambridge, and so am I. So we went out for a coffee. I was so impressed by his work that I wrote a reference for him to get a start-up grant from Unltd, the Foundation for Social Entrepreneurs.

I met Mohammad again three weeks ago for a cup of tea in the cafe of Addenbrookes Hospital in Cambridge. He’s very interested in AKU and wants to support our work. From my side, I think his work is terrific, particularly as I was just experiencing the nightmare of trying to obtain a copy of my children’s medical records from the hospital.

I asked Mohammad about his work. Here’s an extract from the conversation.

Nick: Mohammad, great to meet you again. Tell me about why you set up Patients Know Best.

Mohammad: I found that many patients receive receive care from doctors and nurses from different hospitals, clinics and GP surgeries. They have to call multiple people to find out about their results and to ensure that their medications are changed accordingly. They’re often unsure about the exact plan for their care after a clinician calls them or speaks to them in clinic. They then have to explain to doctors and nurses what other doctors and nurses told them, and worry that they are not providing complete information. They’re frustrated at delays as what they say has to be double-checked.

Nick: Sounds like exactly the kind of nightmare many of our AKU patients face! So what are you doing about it?

Mohammad: Patients Know Best is a website that allows each patient to invite all of the doctors, nurses, pharmacists, social workers and other carers who help with their health, both inside and outside the NHS. The patient can then send and receive messages with each of the people they invited to access their full test results and co-ordinate their care. Clinicians can send their plan in writing to the patient so the patient knows exactly what is to be done, and can then explain it to their other clinicians. And because each person the patient has invited can see what the other health care professionals had written in the patient’s notes, access is instant and no time is wasted double-checking.

Nick: So basically any patient, including rare disease patients, can take control of their own medical records. Sounds terrific. Is anybody using this system?

Mohammad:  It’s used by Great Ormond Street Hospitals gastroenterology team to co-ordinate the care of patients receiving total parenteral nutrition. UCL Hospital uses it for personal health plans. Imperial College Hospital uses it for online consultations.

Nick: Tell me more about who runs Patients Know Best.

Mohammad: I’m the CEO. The Chairman of the board of directors is Dr Richard Smith, former editor of the British Medical Journal. We’ve been featured in the Guardian, and in Wired magazine because of our benefits to patient care.

Nick: How much does it cost?

Mohammad: A personal account costs £100 per year, and you can use it with everyone in your clinical team.

So if you’re interested, check out www.patientsknowbest.com.