Lack of progress in NHS England’s efforts to provide universal access to medical records has led to the development of independent initiatives, reports Ben Adams

1. PATIENT RECORDS
Flipping the model for access to patient records
Lack of progress in NHS England’s efforts to provide universal access to medical records has led
to the development of independent initiatives, reports Ben Adams
Ben Adams freelance healthcare journalist, Chichester, UK
In 2012, amid growing pressure for patients to be allowed to
participate more in their own care, NHS England promised to
make full medical records available to patients in an easy, online
format by 2018. But four years on, little progress has been made.
Some patients can now register with their GPs to look at their
records online but they find only partial information.
Yet while the NHS has struggled to overcome issues of
confidentiality and security as well as technological challenges,
a small and nimble company has jumped into the void. Patients
Know Best, which was set up in 2009, has created a simple
online tool that relies on patients to pull together all the health
information that they and their carers need to see. Initially
designed for patients with complex medical conditions, Patients
Know Best reports that it is now the patient record system of
choice for 60 NHS organisations, including leading hospitals
such as Great Ormond Street.
With the threat of competition, can NHS England still deliver
on its promise to provide a universal medical record system that
people can trust? Or will the job ultimately be done by patients
using their phones and tablets and technology designed and run
by organisations the NHS does not control?
Why has the NHS failed so far?
Since its launch in 2012, care.data, the project to overhaul NHS
England’s information technology and infrastructure has run
into myriad problems and embarrassments,1
including concerns
among patients and GPs about confidentiality2
and security. It
has also struggled to identify IT systems that could cope with
the complexity of the NHS, the largest employer in Europe with
over 1.3 million staff.3
The project became so embroiled that last September the
government announced a review. The man in charge of care.data,
Tim Kelsey, has since left his position as NHS England’s
national information director and his replacement has yet to be
appointed. The findings of the review, led by Fiona Caldicott,
the national data guardian for health and care, are expected to
be published shortly.
A spokesperson for NHS England told The BMJ that there was
now no end date for the care.data programme: “We have not
committed to artificial timescales as we want to get this right
for patients and continue with our preparations,” she said.
However, she added, “We have committed to giving patients
full access to their entire digital health record in real time by
2018”—this is separate from the main care.data programme,
which aims to upload data from GP records to a national
database for access across all NHS institutions.
But in practical terms, opening up medical records depends on
general practices making it happen, and their progress in this
has varied enormously across the country. Some practices have
been working to make patient records even more accessible than
required by current schedules for care.data (box). Others have
barely informed their patients that they can now register to see
their records. There is also little in the way of punitive action
for practices that don’t comply.
Patients who ask for access currently have to be given only a
summary of their records with most elements coded. The
summaries exclude letters, documents, and free text entries, and
how far the information dates back depends on how much data
practices have managed to upload.
Under schedules set out by care.data, more detailed (but still
coded) medical records— including diagnoses, symptoms, and
test results—should be made available by April of this year, but
the review may push this deadline back.4
Many GPs have misgivings about opening up medical records
to patients. Some have expressed concern that this could cause
undue anguish for patients, misunderstandings, or additional
work for GPs dealing with queries or complaints from patients
about what they have read.
Patients Know Best
Patients Know Best has meanwhile forged ahead in this area by
putting patients at the heart of the process. The business has
been working with NHS trusts to obtain agreement for patients
to access their medical records through its platform, using a
secure code. What patients see looks much like Facebook, with
a wall showing a list of current medications and other data and
messages from doctors or nurses to view. Patients can invite
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BMJ 2016;352:i722 doi: 10.1136/bmj.i722 (Published 9 February 2016) Page 1 of 2
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2. other healthcare professionals, carers, and family members to
join and input information or comments; they can also remove
people from the group if they no longer want them to have
access.
The project was founded by Mohammad Al-Ubaydli, who says
he created the business because he has a long term illness and
found managing his complex care difficult without him, his
family, and his doctors all having easy access to his records.
The company began by focusing on records for patients with
specific diseases in hospitals but now works with patients across
England and eight other countries. The numbers of patients
using the PKB platform is difficult to assess, the company says,
but more than 30 NHS trusts (out of the 220 total) are using it
in some form across 60 sites in the UK, including some general
practices.5
Trusts have to pay to use the service but it is free for
patients.
The company’s approach is diametrically opposed to that of
NHS England, which started by trying to allow access to nearly
all the 53 million people living in England in its first two years
but has ended up drip feeding limited data in a phased roll-out.
Al-Ubaydli says: “When you digitise [medical records] this
happens by institution: first via GP practices, then the laggards—
which is the hospitals—but each just takes care of its internal
silo and forgets the patient. Patients usually don’t go through
the neatly organised care route that the government has created
for them—they may go to a private GP in London, then a
supermarket pharmacist in Surrey, then a hospital in Cheshire,
then have a Marie Curie nurse visit.
“So you can say: ‘let’s have a central database’ or you can say
‘what’s the common theme here?’ Well, it’s the patient, so why
don’t we follow the patient and not the institutions.”
Patients Knows Best will also allow third parties to have access
to patients’ medical records if the patient consents. “In our
partnership with [the charity] Cancer Research UK, patients can
consent to open up their data to both CRUK and its research
partners,” he explains. “They would consent the patients to use
this for enrolment in clinical trials and for big data applications.”
Although only focusing on charity deals so far, Al-Ubaydli says
drug and insurance companies are asking for the same
opportunities to access records.
Al-Ubaydli says he could envisage working with NHS England
in future but the NHS England spokesperson had not heard of
Patients Know Best and therefore did not want to comment on
compatibility.
Competing interests: I have read and understood BMJ policy on
declaration of interests and have no relevant interests to declare.
Provenance and peer review: Commissioned; not externally peer
reviewed.
1 Letter from Tim Kelsey to NHS staff on problems with care.data. 2014, www.england.nhs.
uk/wp-content/uploads/2014/04/cd-stakeholder-lett.pdf.
2 Solon O. NHS patient data made publicly available online. Wired 2014 Mar 3. www.wired.
co.uk/news/archive/2014-03/03/care-data-leaks.
3 NHS Jobs. Working in the NHS. www.jobs.nhs.uk/about_nhs.html.
4 West Hampshire Clinical Commissioning Group. Minutes of audit committee meeting, 7
September 2015. www.westhampshireccg.nhs.uk/downloads/1302-whccg15-103-a-
approved-minutes-of-committees-of-the-west-hampshire-ccg-board/file.
5 NHS Federation. Key statistics on the NHS. 15 Jan 2016. www.nhsconfed.org/resources/
key-statistics-on-the-nhs.
6 Hannan A. UK general practice moves to open notes to patients. BMJ 2015;350:h266.
7 Signing up for records access (for patients). www.surveymonkey.com/r/?
sm=ACfewxF69rGGgBGFfbeArFqITcpi1h3HjHEXARehyao%3d.
8 Haughton Thornley Medical Centres. Do you know how many other patients have got
access to their GP electronic health records at Haughton Thornley Medical Centres? 13
Jan 2016. www.htmc.co.uk/pages/pv.asp?p=htmc0328
9 Patients choosing to opt out of Care.Data at Haughton Thornley Medical Centres. 26 May
2014: www.htmc.co.uk/pages/pv.asp?p=htmc0533.
Cite this as: BMJ 2016;352:i722
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3. Will patients benefit?
There is no formal research on whether open electronic health records create better patient outcomes in the UK. Patients’ views vary on
how useful they are.
Marilyn, a 66 year old patient from Manchester, says that when she first signed up with her GP to see her records online, she didn’t have
any major conditions or diseases. “I just wanted to make myself familiar with the process. One thing I did do, however, was to look up some
test results; I then researched them and understood what they meant and then had a very constructive conversation with my doctor about
them. I now don’t take a certain medicine I was taking prior to this as my results were borderline, but both myself and my GP thought this
was the best decision.”
An anonymous patient from London who has been diagnosed with health anxiety and clinical depression said having access to his health
records caused more harm than good. I now can’t help but look at medical records every day and research every detail I see in case
something has been missed” he told The BMJ.
Keeping the focus on the patient is what GPs are keen to do when it comes to opening medical records. Amir Hannan is a general practitioner
in the practice in Hyde, Greater Manchester, where the serial killer Harold Shipman worked. He began creating a website designed to help
his local patients gain access online in 2007, long before the concept of care.data, in the hope it would help rebuild trust among those
registered at the practice.6
He tells The BMJ that having a complicated and confusing system like care.data imposed on patients—among other things, it puts the onus
on people to opt out, rather than asking them to opt in after educating them about the programme—was a poor decision by NHS England.
He also argues that giving every patient complete access to their medical records is not necessarily going to create better outcomes for
everyone, especially those with anxiety or who do not speak English as a first language.
“The government thinks everyone just wants access to data—that data are the answer to care. But you need data plus knowledge to gain
understanding, and this comes with the need for better health literacy and, most importantly, trust between a patient and their GP.
“This is why I ask patients who want to look at their electronic patient records at my practice to fill in a short survey7
beforehand in order to
assess how they will deal with this information.”
So far 5155 (43%) of his practice’s patients have access to their electronic health record.8
This compares with 1262 (11%) patients who said
they wanted to opt out of the future care.data programme in May 2014.9
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