Drivers for change

The use of computers and computing in health has grown exponentially, with a central feature being the patient or health record. A definition of a personal health record (PHR), as described by Pagliari, is: ‘a collection of important information about your health or the health of someone you are caring for, such as a parent or child, that you actively maintain and update. The information comes from your healthcare provider, and from you.’ ^{Reference Pagliari, Detmer and Singleton11}

The EHR, which has a broader definition than a PHR, is being used in most Western countries, with governmental policies to promote its implementation. ¹² The US Centers for Medicare & Medicaid notes that the EHR ‘allows healthcare providers to record patient information electronically instead of using paper records’. ¹² This practice has been echoed by broader political, economic, social and technological changes in the UK. The passing of the Health and Social Care Act 2012 is leading to unprecedented changes in the National Health Service (NHS), ^{Reference Ham, Baird, Gregory, Jabbal and Alderwick13} whereas the publication of the UK government's information strategy, the Power of Information, ¹⁴ and more recently, of Personalised Health and Care 2020: A Framework for Action ¹⁵ reaffirms the view that the use of information enabled by EHRs is a central driver to the future direction of healthcare delivery in the UK.

A ‘good doctor’ has been described as a health professional who can synthesise incomplete information, deal with uncertainty, manage risk, constantly adapt to change and take responsibility for their actions. ¹⁶ The documentation of these critical factors within an individual's health record can only serve to improve their care.

The EHR system is still in its early phases within the NHS. The policy drivers are only at the point of being implemented, but at the same time most organisations are being asked to improve the value of the services they provide by enhancing the quality of care with resources that at best stay the same and at worst are reduced.

Benefits and barriers of e-health

The interplay between health and technology has also been described as e-health. ^{Reference Eysenbach17} In a systematic overview conducted by Black et al, ^{Reference Black, Car, Pagliari, Anandan, Cresswell and Bokun18} e-health is categorised into three areas:

1. • storage, managing and transmission of data

2. • clinical decision support

3. • facilitating care from a distance.

The findings of Black et al ^{Reference Black, Car, Pagliari, Anandan, Cresswell and Bokun18} are comparable with the initial conclusion drawn by Eysenbach, ^{Reference Eysenbach17} namely that there is some evidence that an EHR can lead to improved efficiency, which in turn could improve a Darzi quality measure: clinical effectiveness. There are compelling suggestions that the potential of the EHR lies more within the realm of its secondary use, especially in terms of research linkages, for instance the potential for data prediction and stratification. ^{Reference Jensen, Jensen and Brunak19}

The potential to empower patients to make choices would hopefully be enhanced by digital access to their own health information; ¹⁵ however, we need to take into account the current evidence base and ‘lack of clarity’ on how EHRs are supposed to achieve that. ^{Reference Ennis, Rose, Callard, Denis and Wykes20}

It would seem that the limited evidence of the main constraint of an EHR, increasing the time it takes for clinicians to document information, ^{Reference Ammenwerth and Spötl21} could have an adverse impact on the patient–professional interaction, and consequently, on another Darzi quality measure: patient experience. The increased time to document that clinicians report may be due to the numerous NHS regulatory requirements as much as the process of using an EHR, both of which contribute to the data burden experienced by organisations and clinicians. ^{Reference Farrar22} If the data burden could be reduced it should ultimately improve patient care by freeing up time for clinicians, which they can then spent with patients. Conversely, if EHR data quality is to be of a high enough standard for its secondary research use, what may be required is more time to train clinicians to use an EHR correctly. ^{Reference Oluoch, Santas, Kwaro, Were, Biondich and Bailey23} This means that there will be a constant balancing, framing and reframing ^{Reference Plsek24} of the primary and secondary uses of EHRs within health services, a process that needs to be benefits led, with benefits that are clear for patients, professionals and organisations at the outset.

Use of EHR in health research: examples

A review by Jensen describes a number of potential benefits of using an EHR in secondary research, for example in the field of genetics: ^{Reference Jensen, Jensen and Brunak19} knowledge discovery in databases (KDD) methods by correlating clinical features, predictions from the EHR data, and patient stratification. EHR data could then be linked to the molecular level, such as in pharmacogenomics and gene network-based decision support. ^{Reference Jensen, Jensen and Brunak19}

An example of good practice in this area in mental health services is the Clinical Record Interactive Search (CRIS) ^{Reference Ennis, Rose, Callard, Denis and Wykes20} system used by a number of mental health trusts that provides access to anonymised clinical data for researchers in a robustly governed manner.

The use of records to create linkage within the EHR data has also been recognised and led to the establishment of the Centre for Health Service and Academic Partnership in Translational E-Health Research. This is one of four e-health informatics research centres, and one of the central strands to the UK government's Life Sciences Strategy. ²⁵

Future research should take account of the ‘political, pragmatic and commercial drivers of the decision-making in the commissioning of e-health’, ^{Reference Black, Car, Pagliari, Anandan, Cresswell and Bokun18} which in turn need to inform a paradigm shift in the approach to research, for example, changing the focus toward a value- and outcome-based approach. ^{Reference Porter26}

Implications for the future

If one considers the implications of adopting any scientific or technical system, in this case information management and technology, in a social system, in this case medicine, and the benefits and barriers which may characterise both systems, then a fuller understanding of a ‘socio-technical’ approach to the EHR implementation may emerge. ^{Reference Peltu, Eason and Clegg27,Reference Clegg, Ellis, Wyatt, Elliot, Sinclair and Wastell28}

The socio-technical approach is already starting to take root in the NHS and will affect practice; one major premise is that there is no such thing as an IT project and we should articulate that any change needs to be care quality led and clinically based; IT should enable the change and not drive it. One example is assessing how usable systems are; the mental health informatics community has been an advocate of usability testing and working in partnership with EHR suppliers. ^{Reference McDonald29} If working with industry and the use of industry standard usability scales ^{Reference Sauro30} become the norm, this may lead to a new approach in future implementations. For example, we could see joint ventures between NHS trusts and EHR vendors, with EHRs implemented at a local level using national, professionally agreed standards.

The national research programme to evaluate the effect of IT on patient care has produced a summary report evaluating the results of the National Programme for IT. ³¹ This was a substantially funded and ambitious research programme that recognised that traditional methods of evaluation may not be appropriate for the evaluation of health informatics. Seeing that an EHR has a complicated research base, a meta-narrative approach was suggested as it can systemically make sense of ‘complex, heterogeneous and conflicting bodies of literature’. ^{Reference Greenhalgh, Potts, Wong, Bark and Swinglehurst32} It does so by attempting to deconstruct the research according to underlying philosophical positions (positivist, interpretivisit, critical and recursive) and linking this to the historical roots of EHR research. The latter are evidence-based medicine, human–computer interaction, workplace design, symbolic interactionism, safety-critical systems, social practice view of knowledge, complexity theory and the philosophy of science. Greenhalgh et al ^{Reference Greenhalgh, Potts, Wong, Bark and Swinglehurst32} describe a number of areas where further research is needed: theory-building, collaborative clinical work, how EHR systems should be co-designed, differences between ‘off the shelf’ and ‘home-grown’ EHRs, the ethics of data-sharing, reviews of implementation within organisations, and knowledge translation between what is known and assumed. The authors also suggested three areas where research apparently is not needed: simplified experimental designs, surveys of staff attitudes which are not contextualised, and under-theorised qualitative research of failed implementations.

Information, communication and documentation are vital components of a future vision of digitally enabled patients, professionals and providers. We need to move from imagining a digitally enabled health service to implementing it; some organizations are already using digital enablers such as mobile working and digital dictation with their clinicians. ^{Reference Richardson, Willis and Mckenna33} The Health Foundation has looked at the implications of Learning Healthcare Systems and Foley & Fairmichael suggest that ‘structured electronic health records, rigorous outcome measurement and alternative research methodologies offer the possibility of a healthcare system that learns from each patient who is treated’. ^{Reference Foley and Fairmichael34}

One of the most important drivers for a digitally enabled health service will be the patients themselves. Patients are the experts in their own health issues. The technology that patient groups are already adopting, such as online patient communities (e.g. ACOR.org), ^{Reference deBronkart35} to help them better understand, manage and deal with their health issues, may in turn inform the understanding of how, where and why digital services are used. Attempts have been made to ensure that health and wellness apps are designed to recognised standards. ³⁶ The next step is to ‘let patients help steer our decisions, strategic and practical. Let patients define what value is’, ^{Reference deBronkart35} so that we can delineate the true purpose, and recognise the challenge, of the NHS developing meaningful digitally enabled services for patients, professionals and providers.