PATIENT RECORDS

Flipping the model for access to patient recordsLack of progress in NHS England’s efforts to provide universal access to medical records has ledto 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 toparticipate more in their own care, NHS England promised tomake full medical records available to patients in an easy, onlineformat by 2018. But four years on, little progress has beenmade.Some patients can now register with their GPs to look at theirrecords online but they find only partial information.Yet while the NHS has struggled to overcome issues ofconfidentiality and security as well as technological challenges,a small and nimble company has jumped into the void. PatientsKnow Best, which was set up in 2009, has created a simpleonline tool that relies on patients to pull together all the healthinformation that they and their carers need to see. Initiallydesigned for patients with complex medical conditions, PatientsKnow Best reports that it is now the patient record system ofchoice for 60 NHS organisations, including leading hospitalssuch as Great Ormond Street.With the threat of competition, can NHS England still deliveron its promise to provide a universal medical record system thatpeople can trust? Or will the job ultimately be done by patientsusing their phones and tablets and technology designed and runby organisations the NHS does not control?

Why has the NHS failed so far?Since its launch in 2012, care.data, the project to overhaul NHSEngland’s information technology and infrastructure has runintomyriad problems and embarrassments,1 including concernsamong patients and GPs about confidentiality2 and security. Ithas also struggled to identify IT systems that could cope withthe complexity of the NHS, the largest employer in Europe withover 1.3 million staff.3

The project became so embroiled that last September thegovernment announced a review. Theman in charge of care.data,Tim Kelsey, has since left his position as NHS England’snational information director and his replacement has yet to beappointed. The findings of the review, led by Fiona Caldicott,the national data guardian for health and care, are expected tobe published shortly.A spokesperson for NHS England told The BMJ that there wasnow no end date for the care.data programme: “We have not

committed to artificial timescales as we want to get this rightfor patients and continue with our preparations,” she said.However, she added, “We have committed to giving patientsfull access to their entire digital health record in real time by2018”—this is separate from the main care.data programme,which aims to upload data from GP records to a nationaldatabase for access across all NHS institutions.But in practical terms, opening up medical records depends ongeneral practices making it happen, and their progress in thishas varied enormously across the country. Some practices havebeen working to make patient records evenmore accessible thanrequired by current schedules for care.data (box). Others havebarely informed their patients that they can now register to seetheir records. There is also little in the way of punitive actionfor practices that don’t comply.Patients who ask for access currently have to be given only asummary of their records with most elements coded. Thesummaries exclude letters, documents, and free text entries, andhow far the information dates back depends on how much datapractices have managed to upload.Under schedules set out by care.data, more detailed (but stillcoded) medical records— including diagnoses, symptoms, andtest results—should be made available by April of this year, butthe review may push this deadline back.4

Many GPs have misgivings about opening up medical recordsto patients. Some have expressed concern that this could causeundue anguish for patients, misunderstandings, or additionalwork for GPs dealing with queries or complaints from patientsabout what they have read.

Patients Know BestPatients Know Best has meanwhile forged ahead in this area byputting patients at the heart of the process. The business hasbeen working with NHS trusts to obtain agreement for patientsto access their medical records through its platform, using asecure code. What patients see looks much like Facebook, witha wall showing a list of current medications and other data andmessages 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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other healthcare professionals, carers, and family members tojoin and input information or comments; they can also removepeople from the group if they no longer want them to haveaccess.The project was founded by Mohammad Al-Ubaydli, who sayshe created the business because he has a long term illness andfound managing his complex care difficult without him, hisfamily, and his doctors all having easy access to his records.The company began by focusing on records for patients withspecific diseases in hospitals but nowworks with patients acrossEngland and eight other countries. The numbers of patientsusing the PKB platform is difficult to assess, the company says,but more than 30 NHS trusts (out of the 220 total) are using itin some form across 60 sites in the UK, including some generalpractices.5 Trusts have to pay to use the service but it is free forpatients.The company’s approach is diametrically opposed to that ofNHS England, which started by trying to allow access to nearlyall the 53 million people living in England in its first two yearsbut has ended up drip feeding limited data in a phased roll-out.Al-Ubaydli says: “When you digitise [medical records] thishappens by institution: first via GP practices, then the laggards—which is the hospitals—but each just takes care of its internalsilo and forgets the patient. Patients usually don’t go throughthe neatly organised care route that the government has createdfor them—they may go to a private GP in London, then asupermarket 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 whydon’t we follow the patient and not the institutions.”Patients Knows Best will also allow third parties to have accessto patients’ medical records if the patient consents. “In our

partnership with [the charity] Cancer Research UK, patients canconsent to open up their data to both CRUK and its researchpartners,” he explains. “They would consent the patients to usethis for enrolment in clinical trials and for big data applications.”Although only focusing on charity deals so far, Al-Ubaydli saysdrug and insurance companies are asking for the sameopportunities to access records.Al-Ubaydli says he could envisage working with NHS Englandin future but the NHS England spokesperson had not heard ofPatients Know Best and therefore did not want to comment oncompatibility.

Competing interests: I have read and understood BMJ policy ondeclaration of interests and have no relevant interests to declare.Provenance and peer review: Commissioned; not externally peerreviewed.

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? 13Jan 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 May2014: www.htmc.co.uk/pages/pv.asp?p=htmc0533.

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Will patients benefit?

There is no formal research on whether open electronic health records create better patient outcomes in the UK. Patients’ views vary onhow 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 haveany major conditions or diseases. “I just wanted to make myself familiar with the process. One thing I did do, however, was to look up sometest results; I then researched them and understood what they meant and then had a very constructive conversation with my doctor aboutthem. 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 thiswas the best decision.”An anonymous patient from London who has been diagnosed with health anxiety and clinical depression said having access to his healthrecords caused more harm than good. I now can’t help but look at medical records every day and research every detail I see in casesomething 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 practitionerin the practice in Hyde, Greater Manchester, where the serial killer Harold Shipman worked. He began creating a website designed to helphis local patients gain access online in 2007, long before the concept of care.data, in the hope it would help rebuild trust among thoseregistered 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 onuson 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 foreveryone, 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 gainunderstanding, 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 toassess 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 saidthey wanted to opt out of the future care.data programme in May 2014.9

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