JOURNAL OF MEDICAL INTERNET RESEARCH McMillan et al

Viewpoint

Primary Care Patient Records in the United Kingdom: Past,

Present, and Future Research Priorities

Brian McMillan1, BSSc (Hons), MBChB, PhD, MRCGP; Robert Eastham2, BA (Hons), MBChB, PGCert Ed, MRCGP;
Benjamin Brown1,3, MSc, MPH, PhD, MRCGP; Richard Fitton4, MBBS, DCH, DRCOG, MRCGP; David Dickinson5,
BEd (Hons)
1
Centre for Primary Care and Health Services Research, Division of Population Health, Health Services Research and Primary Care, School of Health
Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester, United Kingdom
2
Whitehall Surgery, Wortley Beck Health Centre, Lower Wortley, Leeds, United Kingdom
3
Centre for Health Informatics, Division of Informatics, Imaging & Data Sciences, School of Health Sciences, Faculty of Biology, Medicine and Health,
University of Manchester, Manchester, United Kingdom
4
West Pennine Local Medical Committee, Barley Clough Medical Centre, Nugget Street, Oldham, United Kingdom
5
Unlike Minds, Gorton Monastery, Manchester, United Kingdom

Corresponding Author:
Brian McMillan, BSSc (Hons), MBChB, PhD, MRCGP
Centre for Primary Care and Health Services Research, Division of Population Health, Health Services Research and Primary
Care
School of Health Sciences, Faculty of Biology, Medicine and Health
University of Manchester
Williamson Building
Oxford Road
Manchester, M13 9PL
United Kingdom
Phone: 44 0161 2757662
Email: [Link]@[Link]

Abstract
This paper briefly outlines the history of the medical record and the factors contributing to the adoption of computerized records
in primary care in the United Kingdom. It discusses how both paper-based and electronic health records have traditionally been
used in the past and goes on to examine how enabling patients to access their own primary care record online is changing the
form and function of the patient record. In addition, it looks at the evidence for the benefits of Web-based access and discusses
some of the challenges faced in this transition. Finally, some suggestions are made regarding the future of the patient record and
research questions that need to be addressed to help deepen our understanding of how they can be used more beneficially by both
patients and clinicians.

(J Med Internet Res 2018;20(12):e11293) doi: 10.2196/11293

KEYWORDS
primary care; access to records; medical records; computerized records

and the popularity of cadaveric dissection in the 17th century

A Brief History of the Medical Record focused on the use of case histories for the teaching of anatomy
The history of medical records can be dated back as far as the [5]. By the 1700s, the keeping of case history books by
Edwin Smith papyrus of 1600 BC, which describes 48 surgical physicians was becoming more commonplace [6], and medical
case histories and was most likely written as an Egyptian centers were keeping increasingly detailed patient records
surgical manual [1]. Later examples include the case histories toward the end of that century and into the 1800s [7,8]. In the
of Hippocrates from around 400 BC [2] and medieval Islamic late 1800s, attempts were made to control the content and quality
texts from around AD 925, which were largely adapted from of hospital records for insurance and medicolegal purposes [7],
Graeco-Roman case histories [3]. Throughout the centuries, but it was common at this time for physicians to keep their
medical records were mainly used for teaching purposes [4], private notes separately to aid patient care [4].

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In United Kingdom, Lloyd George’s National Insurance Act of “[Link].” Computerized records make it easier to ensure
1911 made it compulsory for employed men aged 16-70 years patients are followed up in a timely manner through the use of
to take out health insurance, and for general practitioners (GPs) a “recall” function. Clinical audits can be carried out at the push
providing their care to keep a written record of these patients of a button, enabling clinicians to ascertain how patient care
[9]. While the content and layout of the record were not can be improved, or identify patients who are slipping through
stipulated, their size was determined by the tin storage boxes the net.
provided by the government at that time [10]. These metal boxes
In addition, administrative tasks are now vastly less
were later replaced by envelopes, but the size of the primary
labor-intensive. Keeping an up-to-date list of patients containing
care record persisted after the introduction of the National Health
accurate demographic and clinical information no longer
Service (NHS) in 1948 [10]. Early criticisms of the format of
requires meters of filing cabinet; letters to patients and other
general practice records focused on the inconvenience caused
specialties can be prepopulated with important information from
by the small size of the envelopes, and the absence of a separate
a patient’s record; and patient record transfers between GP
problems list [10]. To overcome these problems, there were
surgeries is now increasingly an electronic process. Moreover,
calls for primary care surgeries to change to records in an A4
electronic record systems are used in the financial management
format in the 1960s and 1970s, but these failed to materialize
of practices, for purposes such as securing reimbursement,
[10]. Such concerns were soon to be made redundant by the
budget planning, and reducing costs. Furthermore, the electronic
introduction of computerized records systems [9].
patient record system can be used to enable secure
communication between members of staff, reducing the risk of
Transition to Electronic Records tasks being left undone and with the added benefit of an audit
The history of computerized records in general practice can be trail.
traced back to Exeter in 1970 when John Preece became the Computerized primary care records also provide a wealth of
first GP to use a computer in the consulting room [11]. The first statistical information. The UK government has long seen the
government-sponsored electronic records system involved a potential value of collecting such information [10], and there
small pilot by the Department of Health in Exeter in 1972 [9]. have been ill-fated attempts to monetize this information in the
Ten years later, the government-sponsored “Micros for GPs” past by private companies [11]. The early GP computer
involving 150 UK practices, laying the foundations for further enthusiasts designed computer systems to collect
innovations [9]. In 1987, 2 private companies began offering epidemiological data, and this tradition has continued to this
computer systems to general practices free of charge with a plan day. Research using the Clinical Practice Research Datalink,
to offer anonymized data to pharmaceutical companies to recoup which holds data on over 11.3 million patients from 674 UK
their initial investment [11]. These schemes were hugely popular practices [12], has resulted in a multitude of improvements in
with GPs and this, coupled with remuneration changes in 1990, patient care and over 1800 scientific publications [13]. There
resulted in an exponential growth in the number of GP practices is a growing interest in using machine learning approaches to
using computerized systems [9]. While <5% of GP practices define disease phenotypes in electronic primary care health
used electronic records in the early 1980s, this increased to 80% records [14] while others are using statistical techniques used
in 1992 as government incentives continued [9] and by 1996, in astrophysics to develop predictive models of disease from
96% of general practices used computerized record systems the Clinical Practice Research Datalink [15].
[11].
In addition, the patient record can now be used by clinicians to
Evolving Functions of the Electronic send referrals directly to secondary care. Standardizing
information flow between referrer and service provider is
Record becoming an increasingly important function of clinical systems.
A 2016 audit of suspected cancer referrals in Leeds found that
While the functions of the paper-based patient record expanded
only 48% were completed with the minimum required clinical
slowly over the centuries, the computerization of medical
information; this can lead to a delay in investigation and
records in primary care has opened up a wealth of additional
diagnosis. By leveraging existing functionality within
functionality. The functions of the electronic patient record can
SystmOne, the “DART” project to streamline the referrals
be roughly categorized into clinical, administrative, and
process led to 100% of forms completed correctly within 3
statistical, although there is some degree of overlap. The
months of introduction [16].
electronic record continues to be used primarily as a clinician’s
aide memoir, enabling primary care staff to see what was Projects such as “DART” illustrate how clinical systems have
discussed at previous appointments or refer to a list of patients’ the potential to both improve patient safety and free-up much
current and previous medical problems. Clinical tasks, such as needed clinical resources. However, some initiatives to improve
prescribing, have become easier, safer, and more cost-efficient patient outcomes by harnessing the functionality within clinical
as electronic record systems can flag allergies, contraindications, systems may conversely have a detrimental impact on GP
potential drug interactions, and suggest lower cost-generic workload. The 2016 King’s Fund report aimed at
alternatives. Some electronic record systems link to knowledge “Understanding pressures in general practice” [17] cited the
databases, such as the National Institute of Health and Care potential for new preventive services to impact the GP workload
Excellence Clinical Knowledge Summaries, or provide handy negatively. Preventive services (such as monitoring of chronic
links to patient information leaflets such as those hosted on disease) have largely been made possible by recent advances

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in clinical systems. However, by linking chronic disease electronic health records [27] and later published a more detailed
management functions to Quality and Outcomes Framework “Road Map” on this topic [28]. Despite the British Medical
targets, there is an inevitable pressure for a huge amount of Association’s concerns [29], the idea of Web-based patient
information to be manually read-coded within the record. Failure access was now firmly on the UK government’s agenda, and in
to do so can have a direct impact on practice income. Mindful 2014, the National Information Board published a framework
of these tensions, it would seem imperative that future initiatives for action incorporating a vision stating,
to use clinical systems to improve patient outcomes must take
In 2015, all citizens will have online access to their
great care not to impact a clinician’s workload adversely.
GP records and will be able to view copies of that
data through apps and digital platforms of their
Enabling Patients’ Access to Their Own choice...it is essential that citizens have access to all
Records their data in health and care, and the ability to ‘write’
into it so that their own preferences and data from
Throughout history, the medical record has traditionally other relevant sources, like wearable devices, can be
primarily served clinicians and served patients only indirectly. included... This framework prioritises comprehensive
The idea of enabling patients to have full access to their medical access—with the ability for individuals to add to their
record, however, is not entirely new. For example, in 1973, own records—by 2018. [30, p 21]
Shenkin and Warner noted,
Providing patients with the ability to write in their own health
Dissatisfaction with the functioning of the medical record will facilitate the collection of Patient-Reported Outcome
care system has become widespread. Four serious Measures as advocated by Gensheimer et al [31].
problems are maintaining high quality of care,
establishing mutually satisfactory physician-patient The Impact of Web-Based Access to
relations, ensuring continuity and avoiding excessive
bureaucracy. We believe these problems could be
Records
alleviated, in part, if patients were given copies of all In 2012, to ascertain the impact of enabling patients to access
their medical records. [18, p 688] their primary care record online, the Department of Health
Early proponents of granting patients open access to their commissioned a systematic review of the evidence, supported
primary care record included GPs from Balsall Health Centre by the Royal College of General Practitioners [32,33]; the
in Birmingham who started enabling patients to access their full review identified 17 randomized controlled trials, cohort, or
primary care record in 1977 [19], and GPs from Wells Park cluster studies and summarized both the benefits and challenges
Road Practice in London who enabled full access from 1983 of providing patients Web-based access to their record.
[20]. Reviews of the impact of promoting such access have
shown beneficial effects and minimal risks [21].
Potential Benefits of Web-Based Access
Providing patients with Web-based access to their record has
The introduction of the Data Protection Act in 1998 gave been shown to benefit both patients and clinicians. Web-based
patients the legal right to access their health records [22], setting access enables patients to book appointments online, request
the scene for changes to come. While the patient records aspect repeat prescriptions, and view test results, letters, problems lists,
of the NHS Connecting for Health 2004/2005 business plan and free-text GP entries [34], although there are wide variations
focused mainly on providing a single electronic record for health in the degree of access provided by GP surgeries [35]. Patients
professionals across hospitals, primary care, and community who use Web-based access report higher levels of satisfaction
services, it introduced a very limited degree of interactivity [36] and improved communication with health care professionals
through the “chose and book” service [23]. At the same time, [32]. Benefits to patients include being able to use the
however, private companies were developing services that would Web-based record as an aide memoir and help them prepare for
enable patients to access their own electronic primary care their next appointment [35,37]. Patients like the convenience
record securely. In 2003, a private company started installing of Web-based access, stating that it saves time and money, and
kiosks in GP surgeries that enabled patients to use fingerprint reduces the number of telephone calls and appointments required
and pin authentication to gain access to their full GP electronic [32,35]. In addition, Web-based access can be empowering and
record [24]. By 2006, around 5000 patients had accessed their increase patients’ feelings of autonomy, with one study noting
records in this way, and it was also possible to gain Web-based that 77%-87% of patients with Web-based access feel more in
record access from home [24]. In 2007, the NHS introduced control of their care [38]. Other benefits include enabling
HealthSpace, a Web-based personal electronic health record, patients to share their records with family members or other
which enabled people to enter their health information and gain health care providers, or to appoint a proxy to access their record
secure access to the summary care information in their GP [33]. Web-based access benefits both patients and clinicians in
record [25]. other ways such as improving self-care, increasing the uptake
In 2010, the Department of Health outlined their vision of an of preventive services, and enabling patients to spot medication
information revolution incorporating Web-based access, giving errors and have them corrected [32]. The use of Web-based
people more control over their health care and improving choice Patient-Reported Outcome Measures built into the patient record
[26]. The same year, the Royal College of General Practitioners increases patients’ confidence in managing their condition and
published guidelines on enabling patients to access their has been shown to reduce remission rates for conditions such

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as inflammatory bowel disease [39]. One study found that 70%

of clinicians reported Web-based access improved trust,
Future Directions
strengthened relationships, and enhanced decision making [38], We are still some way from realizing the National Information
while another found it reduced the annual number of visits and Board’s vision of all UK citizens having read and write access
telephone calls [40]. to their full primary care record through a variety of digital
Challenges and Potential Negative Consequences platforms that enable them to upload data from wearable
devices. Enabling such read and write access could help GPs
Despite the many benefits of enabling patients to access their
improve their understanding of the effect of disease and
record online, there are also a number of associated challenges.
treatment on the everyday lives of patients [39]. The majority
Clinicians have been especially resistant to opening up patient
of GP practices offering Web-based access do so in a limited
records for Web-based access owing to concerns that it will
way, and although there are some notable exceptions [43], most
lead to an increased workload, cause unnecessary anxiety among
do not allow access to the clinicians’ free-text entries [44]. As
patients, increase the likelihood of litigation, or challenge the
De Lusignan et al noted, there is a need for further research to
current primary care business model [33]. Other concerns relate
determine “how the medical record might be redesigned to guide
to security and confidentiality, equality issues (eg, literacy and
and teach patients in a way that promotes self-management and
internet access), risk of coercion, and information technology
ultimately improves health” [33] (p 7). Such research should
system compatibility [28]. The evidence regarding the impact
be multidisciplinary, drawing upon expertise from fields beyond
of Web-based access on the clinicians’ workload is currently
medicine such as health psychology and human-computer
mixed, but there is inevitably an increase in the workload in the
interaction. We need to engage with health economists to
early transitional stage, including activities such as staff training
ascertain the full economic potential of Web-based access and
[32]. As the patient record was not initially designed to be
the impact it may have on the primary care business model.
viewed by patients, the manner in which clinicians write in the
Although some studies using self-report measures exist
notes will have to change if they are to be easily understood by
[35,37,45], further research is also needed to examine how
a lay audience. One study, for example, noted that up to 36%
patients actually interact with their Web-based record and the
of clinicians changed the record content to allow for Web-based
functionality they would like to see. The impact of Web-based
access, and up to 21% reported spending more time writing
access on the patient-clinician relationship and the power
notes [38]. Despite clinicians’ concerns regarding Web-based
dynamic is also worthy of further investigation, especially with
access causing anxiety among patients, leading to an increased
regards to the impact of enabling access to the full free-text
risk of litigation, or data security breaches, a review of the
record. All of these issues underlie what must be our prime
studies, to date, has found little evidence these concerns are
concern, and something for which the evidence is still limited,
realized [33]. There is some evidence, however, that Web-based
that is, how we can harness the potential of Web-based access
access could potentially lead to increases in health inequalities
to improve health outcomes. Patients’ expectations regarding
as those using Web-based access are more likely to be white,
access to their health information are changing, and the newly
female, and middle class [32]. Although one might expect
introduced General Data Protection Regulations [46] will
Web-based access to increase patient activation and, thus,
undoubtedly shift the conversation further toward full
improve health outcomes, less activated patients may be less
unrestricted Web-based access. Clinicians will need to change
likely to take advantage of Web-based access [41], thus
how they view the patient record and learn to work with systems
potentially exacerbating health inequalities. Disappointingly,
providers and patients to help instigate changes that will lead
reviews of the literature, to date, reveal a lack of evidence for
to improved health outcomes and increased savings for the NHS.
the impact of Web-based access on health outcomes [32,33],
although an up-to-date systematic review is under way [42].

Acknowledgments
BM is employed as a National Institute for Health Research (NIHR) Clinical Lecturer (CL-2016-06-006). The views expressed
are those of the authors and not necessarily those of the National Health Services, the NIHR, or the Department of Health.

Conflicts of Interest
None declared.

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Abbreviations
GP: general practitioner
NHS: National Health Service

Edited by G Eysenbach; submitted 27.06.18; peer-reviewed by G Berntsen, A Errazuriz; comments to author 29.08.18; accepted
04.09.18; published 19.12.18
Please cite as:
McMillan B, Eastham R, Brown B, Fitton R, Dickinson D
Primary Care Patient Records in the United Kingdom: Past, Present, and Future Research Priorities
J Med Internet Res 2018;20(12):e11293
URL: [Link]
doi: 10.2196/11293
PMID: 30567695

[Link] J Med Internet Res 2018 | vol. 20 | iss. 12 | e11293 | p. 6

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©Brian McMillan, Robert Eastham, Benjamin Brown, Richard Fitton, David Dickinson. Originally published in the Journal of
Medical Internet Research ([Link] 19.12.2018. This is an open-access article distributed under the terms of the
Creative Commons Attribution License ([Link] which permits unrestricted use, distribution,
and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is
properly cited. The complete bibliographic information, a link to the original publication on [Link] as well as this
copyright and license information must be included.

[Link] J Med Internet Res 2018 | vol. 20 | iss. 12 | e11293 | p. 7

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