interviews

My body, my data

NHE talks to Patients Know Best founder and CEO Dr Mohammad Al-Ubaydli about the moral case for patient-controlled medical records, training clinicians to encourage 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.”

Without that excitement, Dr Al-Ubaydli said, they will never bother getting patients interested too – that was one of the problems with HealthSpace, which was shut down at 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 full record. They can fill out a request and pay a fee – that’s because the doctor has to check every single print-out (and it does have to be a print-out) to see whether it divulges any information about somebody else, or if it contains anything that could be harmful to the patient.

“You’d be surprised how many errors there are in your record – after you’re done thinking how funny it is, you’ll realise how frightening it is, because people are acting on this information. You need to understand your own health – it’s not just your doctor’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 gone from 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, social workers, pharma companies and other stakeholders, demonstrating that you can use it to 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” to specialist 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 patients with long-term conditions, who account for 80% of healthcare spending. Now we’re proving it for wellness.

“GPs have been later adopters of this approach than the rare disease specialists, who have such complex patients that they had to try something radical. For the GPs, it needs to fit into their existing records system, and fit their short appointment times with patients 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 access to 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 decisions about their care, including control of their health records.”

Dr Al-Ubaydli said: “They then backpedalled a little bit, mostly because the doctors told them it wasn’t possible. Then they shrank the pledge to just GP records and online access – access, not control. Even that they’ve been redefining, talking about the subset of the record visible to the patient. They started off with what I believe to be the correct position – but the pace has been slow, and the requirements are not the radical ones they initially started off with. There are definitely more conservative elements making 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 the BMA and the royal colleges, saying: “On the one level, we’re all in complete agreement: 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 parties agree on the high-level things.

“But disagreement often comes because the colleges or BMA don’t understand the actual mechanics of delivering this. They say, for example, ‘we mustn’t share too much of 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 the system automatically explains to the patient what the record means, using information created 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 the leadership 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”, Dr Al-Ubaydli, if they find an old note in there that might distress or annoy a patient, for example.

“Pragmatically, on the ground, when we deploy in an area, we suggest that the last thing to be shared with the patient is the written notes. You start with structured information like the lab results and diagnoses and so on, and the clinic letters designed for patients. They are either non-contentious or structured information on which 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 from 12 months after the go-live – everything up to that point must be manually requested on paper, via the normal processes.

“The last thing you want is for the doctor worrying about what they might have written 20 years ago, and going back to check everything. The patient doesn’t want the doctor spending time doing that. We train the doctor on the best way to write notes on the assumption that everything will be seen by the patient.”

Evidence from the US Veterans Health Administration, he said, shows that sharing records actually caused a drop in litigation. “Transparency helps!” he said. “I can tell a doctor that, though it doesn’t mean they’ll believe it. But even if you take a radical position 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 not saying patients already know best – but that by the time we’ve finished with them, they will. The user interface explains what their lab results mean, their care plan, it explains conditions, allows the patient to understand what’s going on, so that when they come to the doctors’ appointment, the discussion is what are ‘we’ going to do. Everything we do is to facilitate that model, rather than ‘doctor speaks, patient listens’.”

To ensure doctors are ready for this, Leicester Medical School, in October 2013 became 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 of Medicine evaluating the teaching so far, looking at how students have coped using online consultation and what will change in the future, and passing knowledge on to other 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 being rolled out for 90,000 patients, and Great Ormond Street Hospital (GOSH). That implementation helped PKB reach ‘Level 4’ in a government-commissioned report into patient records system by Patient Information Forum back in 2012, the only system to do so.

Newer trusts tend to start using PKB in individual departments, said Dr Al-Ubaydli, “but soon they’ll be in the same position as GOSH and Torbay, where they realise it works and make it the default way of working with all patients”.

He added: “Now we have these deployments at providers, when the commissioners hear about it, they get really excited – and their first question is, ‘how on earth did you manage to convince the doctors to do this?’

“This is exactly the kind of thing – patient-centric, integrated care, multi-channel communication, online consultations – that they want to commission but thought was impossible. Actually, it’s happening on the ground, and when they see it they want to commission more of it. That includes commissioners at the centre dealing with specialist services, as well as the CCGs themselves.

“Mental health trusts also like the system. We just started working with CSE to integrate with RiO, which covers two-thirds of mental health trusts since the National Programme for IT.

“Over Christmas we launched with 12 hospitals for HIV care. We’re finding that doctors like going in cohorts. They care more about 11 departments at other hospitals who do the same thing as them, than they do about 11 different departments at their own hospital. We’re hiring as fast as we can!”