Many countries are investing heavily in electronic health records and health information exchange to drive improvements in the quality of care and reduce the cost of healthcare provision.
The US government predicts its healthcare spending will reach $4.4 trillion by 2018. This rise in cost is unsustainable and translates to an annual expenditure of $13,000 for each man, woman and child.
The adoption of information technology solutions that improve the way healthcare is managed and delivered can drive significant savings. There are well documented examples, such as the reduction in administration costs as a result of electronic claim processing through the New England Healthcare Exchange Network, and the clinical operating cost reduction and process improvements associated with Picture Archiving and Communications Systems.1
However, the real opportunity is to exploit information technology to transform delivery of healthcare resulting in better assessment of the quality of outcomes, and enabling a shift in incentives and rewards from volume to quality of care. This is truly the demonstration of meaningful use of information technology in healthcare.
Our experience with early adopters such as the NHS in England suggests that there are three important information technology aspects to get right upfront when undertaking a major healthcare reform programme, to ensure the results can be properly assessed and executed:
Aligning information sharing designs with health reform ambitions
making the case for sharing information with an effective consent model
using achievable objectives to drive benefit realisation over the long term.
Aligning information-sharing with health reform
Healthcare IT has historically been led by local organisations with local needs. England has many hospitals with department-level systems that typically achieve some integration inside the hospital, but rarely share information outside. Although locally led IT satisfies immediate needs for a hospital or department, it does not address information requirements to support broader healthcare reform for issues such as patient choice, provider reform and system management.
There is a need to balance immediate needs for healthcare delivery, with creating a platform for providing long term improvement requiring greater ‘secondary use’ of information for quality management and research. To strike this balance, investments in Health IT should:
Incorporate common information sharing infrastructure
deliver the right information into each care setting
build for secondary uses of information from the outset.
These influences on design should be governed centrally across a health economy and directed by the ambition of national healthcare reform.
To achieve value in health information, a shared understanding of what the information is, who it relates to, its intended recipient, and its intended use is essential. The NHS ‘Spine’ does this by providing a central set of demographic, identity management and care record services for use by all NHS organisations.
Delivering the right information involves targeting specific requirements for each care setting rather than aiming to share everything.
Palliative and end-of-life care is one area that has been significantly impacted in England.
The NHS shared Summary Care Record (SCR) may contain patients’ explicit wishes, such as the location where they would like to receive care in their final days. Use of such subsets of information has led to a significant reduction of such patients receiving care in hospitals, and around a 60% improvement in patients receiving care in their preferred location.
Designing in the ability to re-use information from the outset ensures that information management does not become an additional overhead. Healthcare commissioners, research-ers and providers are interested in secondary uses of healthcare information to reveal performance - and quality of care information - and establish payment metrics, while the same information helps patients make informed choices based on the performance of service providers.
In England, support for anonymised data was designed from the start. This provided capabilities that would have been impossible to build piecemeal or retrofit, including the ability to conduct epidemiological studies, perform clinical audits and analyse activity patterns.
Consent and information-sharing
Using information to improve the quality and effectiveness of care highlights the tension between accessibility of data and protection of privacy. Prevailing privacy legislation, such as the Health Insurance Portability and Accountability Act in the US is typically used to promote privacy at the expense of wider benefits that information-sharing may provide.
Experience from the UK suggests that it is possible to identify a middle ground by:
Recognising the limits of ‘opt-in’ consent models
designing a system that meets the views of the substantial majority while recognising the rights of all
establishing effective regulation to provide confidence in the information-sharing mechanisms.
The issues of confidentiality and consent are complex. Even where there is widespread agreement, such as sharing details of current medications, issues arise where that information reveals sensitive information - as some drugs are closely identifiable to sensitive diagnoses such as HIV or mental health issues.
In Scotland, an Emergency Care Summary (ECS) currently covers allergies and medications. There was broad consensus that sharing this basic information was beneficial and that meaningful clinical use would rely on its near universal availability. The implementation was based on an ‘implied consent’ model for posting the data, whilst requiring clinicians to gain the patient’s active ‘consent to view’. An opt-out option was provided though experience shows this is rarely used with less than 0.02% of the five million population2 choosing to opt out.
By 2008, ECS records had been accessed over one million times. Following an independent review, the English SCR programme moved from a model requiring prior active consent to one similar to that in Scotland. It is significant that both systems provide an opt-out for patients who do not want their information shared.
An important aspect of the UK experience is that consent to share still only relates to a subset of all personal health information. More sensitive information can be withheld. This means there is no single ‘out of the box’ solution for health records; instead, emphasis has been placed on governing appropriate access and use of shared information.
Finding the middle ground in the confidentiality debate means designing a system that meets the views of the substantial majority, while recognising that provision needs to be made for dissenters. The two contrasting approaches taken in Scotland and England provide a good illustration of how public attitudes to consent can be used to drive the design.
Effective regulation is needed to sustain confidence in the information-sharing mechanisms based on implied consent. Effective policing requires a strong central infrastructure to facilitate audit and also enable patients to be able to know and raise challenges about who has accessed their data. The English ‘Spine’ includes a comprehensive access control framework based on establishing legitimate relationships with patients and is supported by a national secure smart card. This central infrastructure enables effective policing to maintain patient confidence.
Producing long-term benefits
In the US, the measures and incentives are being created for the next five years. For example, e-prescribing, labs, claims and eligibility checking are important for 2011; information exchange between primary and specialty care providers is important for 2013; and wider sharing for secondary use is supported from 2015. The UK experience suggests that major healthcare changes of this nature require this type of longer term view, including achievable milestones and interim benefits delivery to help build momentum.
Even when implemented, the UK experience suggests that systems need to be in place for a significant time before adoption and usage approaches levels that will deliver the anticipated benefits. Important factors that have been shown to facilitate progress and accelerate adoption rates include:
Identifying key clinical influencers
exploiting existing investments in legacy systems
managing benefits delivery by balancing infrastructure development with local system delivery
using incentives to drive solution integration and adoption.
Early identification of clinical leaders who ‘get it’ and will advocate the programme and its benefits to other clinicians seems self evident - clinicians who are both influencers in their field and are IT-aware, are rare. Change needs to be driven from within the clinical professions and embedded in the way those professions are governed. In the UK, significant effort has been devoted to creating professional record-keeping standards that fit with an electronic age. This is having a positive impact on difficult issues such as liability in respect of shared electronic records.
Exploiting existing investments in legacy systems can reduce costs and complexity while accelerating benefit delivery. The healthcare industry has made extensive investments in IT; typically legacy systems are not interconnected or fully integrated in the delivery of care. The NHS recognised this when the ‘GP Systems of Choice’ contract was established to enable doctors to continue using their legacy systems while building in provision for enhancements in interconnectivity. The overall change no longer seemed daunting or complex.
Optimising the benefits and controlling the impact of change means balancing infrastructure development with local system delivery.
In the UK, central infrastructure for e-prescribing and e-appointment booking services were in place several years before significant uptake of the service, as all the components - infrastructure and a range of compliant end-user systems - needed to be in place in specific localities for it to work. Part of this dynamic is allowing vendors to plan for infrastructure requirements within their overall product development priorities.
Accreditation of systems plays a key part in driving change, and both the HIMMS adoption model in the US and the GP Systems of Choice3 contract in the UK, provide mechanisms that enable a market-wide focus to drive delivery of the benefits.
Using incentives to drive adoption is often cited as the key reason why electronic records are used throughout primary care in the UK, and they are a central plank of the changes in the US.
Incentives have played a key role in deploying advanced functionality such as e-prescribing and support for the SCR for GPs in England.
Early adopters, such as the NHS provide interesting lessons for those seeking to use information technologies to deliver better, safer patient care while controlling growing healthcare costs.
The NHS already had in place near-universal adoption of electronic records in primary care.
Whilst advantageous, this presented obstacles to change through legacy systems. There is much to learn from the NHS experience. In particular, the move to implement services at scale has revealed the art of the possible. The strengths and limitations of different approaches to sharing information are more clear, and the feasibility of using information shared across organisational boundaries to improve individual care; professional behaviours and even underpin rewards for good outcomes has been demonstrated.
From its inception, the programme has been driven by ambitions for health reform, with information sharing underpinning delivery rather than somehow standing as a separate ‘eHealth’ objective.
Protecting patient confidentiality has also come through intact. Far from creating an information free-for-all, the NHS has shown that when presented with a system that enables effective policing to maintain confidence, a substantial majority of people accept the case for sharing information to receive more personalised and higher quality care.
Perhaps the most significant technical feature of the UK experience has been the emergence of sufficiently robust technical standards to allow a more open and diverse infrastructure.
This requires focus on achievable objectives, making the most of legacy system capabilities and creating incentives to align system vendors’ product development with longer term policy goals - to deliver sustainable benefits.
A clear lesson from the UK’s experience is that these achievements were not inevitable.
Many steps challenged individual short term interests. Delivering meaningful healthcare reform required a clear vision and visible leadership for the way health information is shared and used.
1 For examples, visit www.connectingforhealth.nhs.uk/systemsandservices/pacs/story
2 NHS Scotland report
Chris Steel is PA’s head of IT in the United States and also leads PA’s information technology consulting business in the region.
George MacGinnis is a healthcare expert and a member of PA’s eHealth team and works within the NHS to develop use of personal health technologies. George is vice-chair of the Continua Health Alliance’s Use Case Working Group, leading work to establish more consumer-ready connected health services.
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