BBC Radio covers Patients Know Best

BBC Radio 4’s Inside Health episode today covered Patients Know Best. It was great to meet Dr Mark Porter, the presenter, along with the rest of his team. They came to interview doctors and patients at Great Ormond Street Hospital about their use of the software.

PKB’s slot starts at 16 minutes into the audio, which is available for download below or on the episode web site:

It was interesting for me to hear how Sean used the software with his medical team:

I need quite regular contact, day-to-day, because things change on a daily basis with the feeding; sometimes I need it reviewing quite urgently. So say I’ll see someone from neurology, gastric, nutrition, physios and everyone really on a weekly basis. […] When I was younger you really had to get into contact with doctors because you would constantly be on the phone and then they wouldn’t be able to get back to you and then you’d have to try and send an e-mail to someone and they necessarily wouldn’t get that e-mail. It was just really hard to keep in touch.

Sean showed Mark how he accesses PKB on his iPhone. We often hear from teenagers that this is how they prefer to use PKB, and the web in general. Which is why we built a smartphone app API so that developers can integrate their smartphone software with PKB.

The full transcript is available after the jump.

Porter

Some great names, thank you Kamran.  Well we’ll keep a watchful eye on the journals for papers on iPad elbow, I can assure you it’s a very real condition.

 

Now, how many times have you been to an outpatient appointment only to find that the doctor seeing you doesn’t have your notes or blood test results? Annoying isn’t it?  Centralised electronic records could be the answer, although GP Margaret McCartney doesn’t seem that convinced.

 

McCartney

Cradle to grave, womb to tomb. Medical records record your interactions with the health service from your first neonatal cry, to your departure from this mortal coil. Far from being an organized, streamlined, consistent notation helping both healthcare professional and patient, the current system of medical records haphazardly straddles both electronic and paper notes. So if I’m trying to find an old scan result, I might have to search through paper, electronic and hospital database results – creating inefficiencies for both patient and me.

 

In some of our older patients’ notes, I can still find the petite, 5×7 inch yellowing cardboard envelope known as the ‘Lloyd George’ notes. The entries are succinct. Copperplate swirls often state just the treatment – never mind details of the examination, or even the diagnosis. While old case notes like these still reside dusty on the shelves, most practices are now paper-light – test results and letters which arrive each day are scanned in to each person’s electronic record.

 

In the past, GP records have been seen as the lynchpin – the one record travelling through your life and around the country with you.  In contrast each hospital has its own records, separate from the GPs, with no direct communication existing between them. For example, psychiatric hospital notes are kept separate, as are maternity notes. And the latter are usually held by patients, who must carry them from one appointment to the next. Not such a bad idea, given how often medical notes don’t make it to the right clinic. The result is millions of paper records weighing down roomfuls of shelves, needing clerical staff to trundle massive tomes around on trolleys, with the potential for misfiling and losing records.

 

Enter the solution – electronic medical records, to brilliantly provide instant and easy to patients’ notes. But there are downsides, for example, hospitals have found that famous people’s records have been accessed by people with nothing to do with their care.  In truth, electronic notes come with worries and hassles – just like paper records. Maybe we need to focus on what is useful – like the paper based, patient held records specifically dealing with medications requiring regular monitoring.

In my view, we’d be better off not with a whole new electronic record, but working better with what we have – sharing essential  information, case by case. I’d prefer that patients carried a cheap memory stick containing edited, useful data to be shared only with chosen professionals – and not a clogged up electronic system where we can’t easily find what’s useful.

 

Porter

And Margaret may be on to something there, but instead of every patient carrying a memory stick, why can’t they simple carry a unique login to a website which can be accessed by any healthcare professional?

 

Well such a system is already being used by several hospitals including Great Ormond St in children with complex conditions. Consultant gastroenterologist Susan Hill is one of the doctors pioneering it.

 

Hill

At the moment it’s largely paper based, we can have probably about 12 inches of paper notes on some of the older children, if not more.

 

Porter

And some notes, as well, I mean look this is a six month old child, I mean these notes are – what – it’s like the Encyclopaedia Britannia.

 

Hill

Oh yes.

 

Porter

So these have to whizz round the hospital to each of the different clinics?

 

Hill

Absolutely, which means that the notes can only be in one place at a time.  And we’ve done our utmost to improve this, as you’ll see it’s got a barcode on it so that we can trace it to different places around the hospital.  But still there can be times when you urgently need the right set of notes and they’re not available.  And that’s where it falls down.

 

Actuality

Hill

Hi there Sean.

 

Sean

Hiya.

 

Hill

How are you?

 

Sean

I’m okay.

 

Hill

Good.  Good journey?

 

Sean

Yeah really good, yeah.

 

Hill
Come and sit down here.

 

Porter

Seventeen-year-old Sean Brown has been using a new internet based electronic record system called Patient Knows Best for the last year.  A rare bowel disorder means he has to be fed directly into his bloodstream. Sean travels down from Telford to see Dr Hill every six months but needs regular care from numerous health professionals in between – so continuity is vital.

 

Brown

I need quite regular contact, day-to-day, because things change on a daily basis with the feeding; sometimes I need it reviewing quite urgently.  So say I’ll see someone from neurology, gastric, nutrition, physios and everyone really on a weekly basis.

 

Porter

And unscheduled visits to other hospitals can be problematic for all involved.

 

Hill

I’ve had patients complain to me that they go to casualty and nobody seems to know what’s going on, no one in that hospital would perhaps even have really heard of their illness, would have very little idea of what to do if the child’s acutely unwell.

 

Porter

And this could be for relatively mundane unconnected problems – a sprained ankle, an infected wound or some other problem?

 

Hill

Yes because they’re complicated patients doctors who don’t fully understand what their underlying problem is are often very reluctant to prescribe even simple things, you’re right.  And it can all take quite a long time.

 

Brown

When I was younger you really had to get into contact with doctors because you would constantly be on the phone and then they wouldn’t be able to get back to you and then you’d have to try and send an e-mail to someone and they necessarily wouldn’t get that e-mail.  It was just really hard to keep in touch.

 

Porter

And this is where the new Patients Know Best system comes into its own. Founder Mohammad Al-Ubaydli showed me how it works.

 

Al-Ubaydli

When you first log in it’s a bit like the Facebook wall, so an activity feed of prescriptions they’ve done for you, messages that have arrived.  So you can see the message that you sent to your GP, you can see the conversation you had with your specialist nurse in London, perhaps with your consultant in Torbay.  And what’s really powerful is everybody else can see what’s going on.

 

Porter

There’s a note here from last Monday – blood pressure results are up there, I’ve been in with a sore throat, had a prescription here.

 

Al-Ubaydli

Yes, so you can see all the previous discussions you’ve had over time and who you had them with.

 

Porter

One of the attractions for me, as a GP, I can imagine this child who’s under the care of someone at Great Ormond Street, something happens to him or her, they come in to see me in my clinic and I want to access their medical records to check that something I’m doing isn’t going to interact with any of the medicines that they’re on – can I access this from my computer on the desk?

 

Al-Ubaydli

You can lot in from any computer anywhere in the world and a lot of doctors like it because they can use an iPad, patients like it because they can use their smart phone – basically anything with internet access.

 

Brown

I’ve got my iPhone here, I’m going to log on now.  Here we are.  So as you can see here it gives you all the conversations.

 

Al-Ubaydli

Basically add – add a friend, add a doctor.

 

Porter

So that would be an electronic invite, a bit like inviting someone to become a friend on Facebook and you’re in?

 

Al-Ubaydli

And you’re in.  You can’t poke your doctor but it’s the same idea of just building that network of the people who look after your health.  And they click the discuss button and choose who to include in that conversation – a consultant and a specialist nurse.

 

Porter

Could be their social worker, could be their pharmacist if it was a prescription inquiry.

 

Al-Ubaydli

So for example children with asthma – the teacher in the school is the most important person to know the treatment plan but the NHS can’t share the record with a teacher but the family can say please just been to hospital with a new treatment for the asthma can you print this off and stick it in the classroom so you know what to do for my child?

 

Porter

And equally can you remove people once they’re in?

 

Al-Ubaydli

And that’s the key – because you can at any time remove somebody then you feel safe in giving somebody access.

 

Porter

How well received has this been by doctors and nurses out in the community for instance?

 

Al-Ubaydli

Doctors primarily are worried about safety, so if they don’t know enough about the patient or the condition they start doing things like sending patients to A&E or say I can’t treat you now I’ve got to talk to the hospital and that’s very expensive and very inconvenient for the patient.  But as soon as you say here’s everything about me and I know how to use it with you and you can contact somebody else to get further information they really like it because they can get that safety as well as being convenient enough to fit into clinical practice.

 

Brown

It’s just really brought the talking with doctors into the 21st Century really, it just makes living with a medical condition a lot more easier, so it just feels like you have an equal say on your care.

 

Porter

Sean Brown. Meanwhile the Department of Health has been busy too and, contrary to what most people think, there are already centralised electronic records that can be accessed by clinicians throughout the NHS. So far in England this so called summary care record covers 11 million people but more are being added every week. Dr Gillian Braunold is Clinical Director of the project at the Department of Health

 

Braunold

It’s only information that’s in the GP record and it is what we call a core data set, that is repeat medications that they’re allowed to get dispensed, their acute medicines for the last six months and any allergies or adverse reactions.  And that’s updated automatically from the GP every time they go in.

 

Porter

Does it do that for every patient in the country?

 

Braunold

Every patient that hasn’t opted out, where their practice is uploaded.

 

Porter

And this is England only.

 

Braunold

England only.

 

Porter

What’s happening in the rest of the UK?

 

Braunold

Each of the devolved nations are doing their own equivalent summary care record programme.  The Scottish emergency care summary is very sophisticated, people are accessing it regularly for improved care and they’re starting to put more on it with patient consent – end of life care plans etc.  Wales and Northern Ireland similarly have their own projects.

 

Porter

So this is pretty limited amount of information at the moment, who’s using it and when?

 

Braunold

A common misconception is that the summary care record will be really helpful in a dire emergency, that’s not where the summary care record is going to be most helpful.  But the summary care record comes into its own when you go to visit an elderly patient with multiple tablets on their desk and you don’t know which ones they’re taking, which ones they’re supposed to be taking.

 

Porter

So someone who calls their GP at the weekend?

 

Braunold

Indeed.  So GP out of hours is the prime use and we’re getting a lot of evidence now that it’s making those consultants, about one in five of the people they’re seeing where language problems or the patient isn’t able to give a good history, where it’s helping them to feel more confident in the way they’re treating the patients and that shifting their decisions about what to prescribe.

 

Porter

What other sort of information could we be putting on this record?

 

Braunold

What we’d like to do, and we’ve started to do in some small pilot areas, is to populate the summary care record with more information with the consent of the patient.  So we’re able to put free text and coded data to support their diagnosis and their treatment plans.  So let’s imagine somebody with mental health problems who is happy to have that information about their bipolar disorder put on to their summary care records so if that they’re acutely ill the people in out of hours will know what medicines and what history they have and how to manage them best and who are the carers.

 

Porter

So this is a system that’s designed to help healthcare professionals rather than give patients lots of access to their own notes but the government are looking at other ways aren’t they?

 

Braunold

The government intends for every patient to be able to access their GP record where the software allows it by the end of this term of government.  So that’s a separate programme that’s working alongside, so patients would be able to access their own records and show it to clinicians, if they travel abroad through the internet.

 

Porter

So just over a normal internet connection.

 

Braunold

Indeed, so that’s incredibly helpful as well as clinicians having access to their record that’s for clinical use.

 

Porter

So the two systems will run in tandem?

 

Braunold

Indeed.

 

Porter

Gillian Braunold. And I am afraid that is all we have time for – except  to tell you about next week’s programme when I will be exploring some of the unexpected knock on effects of GP targets – including a rather annoying cough. Join me then to find out more.

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