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Patients Know Best is built on the moral and legal reason that patients data belongs to the patient. See more of the interview by PKB's founder and CEO, Dr. Mohammad Al-Ubaydli.
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21.03.14
My body, my dataSource: National Health Executive Mar/Apr 2014
NHE talks to Patients Know Best founder and CEO Dr Mohammad Al-Ubaydliabout the moral case for patient-controlled medical records, training clinicians toencourage patients to access and control their own data, and ‘backpedalling’government policy.
Patients Know Best (PKB) is a social enterprise dedicated to making it easier for
patients to control their own medical records, attracting a lot of attention in the NHS
and globally.
Its founder, Dr Mohammad Al-Ubaydli, an honorary senior research associate at UCL
medical school, told NHE: “The basic moral position is this: it’s your body, so it’s your
data.
“For me, this started off because I have a rare disease myself. My doctor panics, but if I
tell him that my ENT specialist said 1, 2, 3, another specialist said 4, 5, 6, and this is
what they recommend – that’s how you get a fast, safe consultation. That happens
because my doctors trust me, and because I know what’s going on.
“When I went to my specialist and said I want to share my record, we’ve set up a
system so we can do this record-sharing, he said to me, ‘I’m not sure we can do this
because of the Data Protection Act’. I had to point out that the Act is to stop him sharing
my data with anyone else – not to stop him sharing it with me.”
A question of trust
Dr Al-Ubaydli continued: “I’ve found many of these misconceptions out there, but it was
particularly surprising with my doctor, because he gives me the medication that he
taught me how to inject myself, so I can be independent. It’s expensive, dangerous
medicine that he trusts me with – but he’s apparently not sure if he trusts me with my
own record.”
Getting doctors on board is the vital thing, he said. “Research shows that the biggest
determinant for a patient signing up for the system is their doctor asking them to.”
So it has been important to break down misconceptions, and to teach doctors that
sharing records is not dangerous, anxiety-inducing or time-consuming – quite the
opposite. “We’ve shown them how they will actually save time, reduce the length of
clinical appointments, reduce errors, and improve quality outcomes for patients –
those are the things that get doctors excited. They can convey that excitement to the
patient.”
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Without that excitement, Dr Al-Ubaydli said, they will never bother getting patientsinterested too – that was one of the problems with HealthSpace, which was shut downat the end of 2012. Google Health also failed to take off, and was abandoned in 2011,with all its patient data deleted in early 2013.
‘Frightening’ errors in patient records
Dr Al-Ubaydli explained: “By law, since the early 2000s, anyone can request their fullrecord. They can fill out a request and pay a fee – that’s because the doctor has tocheck every single print-out (and it does have to be a print-out) to see whether itdivulges any information about somebody else, or if it contains anything that could beharmful to the patient.
“You’d be surprised how many errors there are in your record – after you’re donethinking how funny it is, you’ll realise how frightening it is, because people are actingon this information. You need to understand your own health – it’s not just yourdoctor’s problem.”
In terms of formal contracts, PKB has had most success so far in acute trusts,beginning with rare disease specialists. He said: “We’re in 30 trusts in England, Scotland and Wales. In the last 12 months we’ve gonefrom just being UK-focused to having deployments in Australia, Hong Kong, Holland,Belgium, Ireland and the USA.
“We’ve established that the model works in the UK. It’s also used by charities, socialworkers, pharma companies and other stakeholders, demonstrating that you can use itto join up the record across everyone who helps out the patient in healthcare,including the patient and their caregivers.”
But primary care has “different requirements and a completely different scale” tospecialist care, Dr Al-Ubaydli explained.
“We started off with rare diseases: the 1% of the population with a complex condition.They gave it a go when it was still unusual. Then we proved it in the 20% of patientswith long-term conditions, who account for 80% of healthcare spending. Now we’reproving it for wellness.
“GPs have been later adopters of this approach than the rare disease specialists, whohave such complex patients that they had to try something radical. For the GPs, itneeds to fit into their existing records system, and fit their short appointment times withpatients who may not come back for a year. We’re just starting in those environments.”
Health policy
Dr Al-Ubaydli told us he was “very happy” with Jeremy Hunt’s pledge on online accessto GP care records by 2015, but said the government’s ambitions have shrunk.
The 2010 Coalition Manifesto said: “We will put patients in charge of making decisionsabout their care, including control of their health records.”
Dr Al-Ubaydli said: “They then backpedalled a little bit, mostly because the doctors toldthem it wasn’t possible. Then they shrank the pledge to just GP records and onlineaccess – access, not control. Even that they’ve been redefining, talking about thesubset of the record visible to the patient. They started off with what I believe to be thecorrect position – but the pace has been slow, and the requirements are not the radicalones they initially started off with. There are definitely more conservative elementsmaking the opposite case.”
‘They don’t understand the mechanics of delivering this’
He did not name those elements directly, but did discuss the positions adopted by theBMA and the royal colleges, saying: “On the one level, we’re all in completeagreement: they would say they’re in favour of patients understanding their record,and we would say we’re also concerned about the anxieties it might cause. All partiesagree on the high-level things.
“But disagreement often comes because the colleges or BMA don’t understand theactual mechanics of delivering this. They say, for example, ‘we mustn’t share too muchof the notes with too many patients, because some will be anxious’. But in reality,patients don’t get anxious, and there are safeguards to ensure it’s opt-in and that thesystem automatically explains to the patient what the record means, using informationcreated for the layperson by the Royal College of Pathologists.
“Once you explain that to the individual doctor, they do get it. But some people at theleadership level are not aware, and push policy in the wrong direction.”
A written notes ‘amnesty’
Patients’ reactions to what they find in their record obviously concerns some clinicians.The current paper-based request system gives them time to “prepare an apology”, DrAl-Ubaydli, if they find an old note in there that might distress or annoy a patient, forexample.
“Pragmatically, on the ground, when we deploy in an area, we suggest that the lastthing to be shared with the patient is the written notes. You start with structuredinformation like the lab results and diagnoses and so on, and the clinic lettersdesigned for patients. They are either non-contentious or structured information onwhich you can layer explanations without taking up the doctor’s time.
“For the written notes, we normally suggest an ‘amnesty’.”
This would mean, for example, only allowing automatic and instant access to notes
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from 12 months after the go-live – everything up to that point must be manuallyrequested on paper, via the normal processes.
“The last thing you want is for the doctor worrying about what they might have written20 years ago, and going back to check everything. The patient doesn’t want the doctorspending time doing that. We train the doctor on the best way to write notes on theassumption that everything will be seen by the patient.”
Evidence from the US Veterans Health Administration, he said, shows that sharingrecords actually caused a drop in litigation. “Transparency helps!” he said. “I can tell adoctor that, though it doesn’t mean they’ll believe it. But even if you take a radicalposition on record-sharing, the last thing you want is to use up valuable clinician time,taking them away from patient care and incentivising them to cover their own backs.”
Shared decision-making
Dr Al-Ubaydli described the company name as also a mission statement. “We’re notsaying patients already know best – but that by the time we’ve finished with them, theywill. The user interface explains what their lab results mean, their care plan, it explainsconditions, allows the patient to understand what’s going on, so that when they cometo the doctors’ appointment, the discussion is what are ‘we’ going to do. Everything wedo is to facilitate that model, rather than ‘doctor speaks, patient listens’.”
To ensure doctors are ready for this, Leicester Medical School, in October 2013became the first to teach online consultations as part of its curriculum.
On 20 March, PKB and the university were due to hold an event at the Royal Society ofMedicine evaluating the teaching so far, looking at how students have coped usingonline consultation and what will change in the future, and passing knowledge on toother medical schools. NHE will have more about that event in our next edition.
Providers and commissioners
The most advanced PKB implementations include those at Torbay, where it’s beingrolled out for 90,000 patients, and Great Ormond Street Hospital (GOSH). Thatimplementation helped PKB reach ‘Level 4’ in a government-commissioned report intopatient records system by Patient Information Forum back in 2012, the only system todo so.
Newer trusts tend to start using PKB in individual departments, said Dr Al-Ubaydli, “butsoon they’ll be in the same position as GOSH and Torbay, where they realise it worksand make it the default way of working with all patients”.
He added: “Now we have these deployments at providers, when the commissionershear about it, they get really excited – and their first question is, ‘how on earth did youmanage to convince the doctors to do this?’
“This is exactly the kind of thing – patient-centric, integrated care, multi-channelcommunication, online consultations – that they want to commission but thought wasimpossible. Actually, it’s happening on the ground, and when they see it they want tocommission more of it. That includes commissioners at the centre dealing withspecialist services, as well as the CCGs themselves.
“Mental health trusts also like the system. We just started working with CSE to integratewith RiO, which covers two-thirds of mental health trusts since the NationalProgramme for IT.
“Over Christmas we launched with 12 hospitals for HIV care. We’re finding that doctorslike going in cohorts. They care more about 11 departments at other hospitals who dothe same thing as them, than they do about 11 different departments at their ownhospital. We’re hiring as fast as we can!”
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