In May 2012 I wrote an article (Patient access to GP Records by 2015) and offered some immediate thoughts on who would be the primary beneficiaries of this Department of Health mandate, with some thought on identifying the primary element of the patient population, access to medical information should be targeted at.
A little over two years on and with the benefit of additional insight from consultancy engagements with some very innovative and forward thinking solution providers, there remains much to be resolved if the target is to be met, especially with anything like a solution that delivers on the range of benefits that should be secured.
Current Focus Remains Narrow
Technology choice for electronic patient records (EPR’s) and patient record access is wide and varied, from traditional operational patient administration system providers, with these largely focusing on improving visibility and accessibility of clinical patient information operationally, to the more expensive and challenging to implement solutions that can integrate patient data from a wide range of operational clinical systems, from independent solution providers.
For the most parts investment in EPR technologies are currently health sector and organisationally specific, with current early phases of delivery focusing on clinical operational needs (data quality) and business performance improvement (QIPP), largely it is felt because these tend to be business case qualifications (QIPP deliverables) that are easier to define, over alternatives concerning wider benefits of patient engagement.
The technology to enable patient record access exists, and certainly with the right approach and focus, the target for enabling citizen access to at least key parts of their record remains achievable. There are however, some fundamental considerations to be addressed to move thinking beyond current operational focus, and onto the service transformation potential citizen engagement would deliver.
Patient (Citizen) Centricity
A citizen view servicing “meaningful use”, requires the assimilation from multiple organisations, e.g. primary care, community care, social care, acute care and mental health, as well as systems, such as appointment management solutions, prescribing management systems, patient management systems and healthcare contact systems etc., especially when giving due consideration to the touch points across health and social care for patients for example with long-term chronic conditions.
This means that the maximum benefit to be secured by access to medical information can only realistically be achieved by a strong commissioning lead, and one that is capable of resolving the conflicting interests and competing requirements individual information host organisations will bring to the table.
It remains the case that the greatest benefit to be secured from improving patient engagement through provision of better information will be derived from engaging with those that are suffering from one or more long-term chronic condition, with which engagement succeeds in enabling patients and their carers to better manage the condition(s), to the point of reducing the numbers of calls and escalations occurring that require direct engagement of health professionals and any associated service provision.
Data Ownership Becomes a Concern
However, it remains the case that for this engagement to be most useful, the solution should provide the citizen (owner) with a mechanism by which they can consent access to the information, to members of their personal care circle (friends and family), citizens should be able to refine access according to need, i.e. allow some carers to see more of the record that others.
Inclusiveness, accessibility and security subsequently still also remain primary concerns, given the largest proportion of patients that stand to gain from engagement supported with access to health and social care information are those with long-term chronic conditions, a large proportion of which presently have limited engagement with technology.
Along with the issue of ownership, a further information governance concern arises from delivery of a single unified patient record, built from the assimilation of information from a multitude of operational systems managed by different organisations (data controllers), in that data moved into a new host, creates new data controller obligations and information governance responsibilities that can be difficult to align operationally.
Critically new patient identifiable systems are necessary, such as a “Master Patient Index” for example, that enable different patient coding systems and identification methods to be unified, thus ensuring that data assimilated and presented is relevant to the patient concerned.
Administering a master patient index sitting in between a multiplicity of systems in different organisations would need to involve resources across all organisations, and in the process, would likely lead to an increase the range of access to patient identifiable information above and beyond current organisational focused remits.
Looking ahead, the range of benefits for all concerned increase when integration with social care information is incorporated but as before, concerns for data protection and information governance also increase.
Key to Resolving Ownership and Data Protection
Establishing a maintainable Master Patient Index (Citizen Directory Service) within a safe secure framework capable of accommodating the administration and multiple access requirements with the ability for the citizen to understand and appreciate the range of identifiers associated to them, with an ability to self-maintain appropriate identification attributes would provide for a solid engagement foundation from which service and bi-directional data flows could be managed.
Additional benefits to be derived from a self-maintained citizen directory include:
- A range of health and social care data management needs that are outside of the current health and social care systems, these include:
- Details on their personal care circle, family and friends supporting them and what level of care they provide, mentors, and additional support they may have contracted or secured privately from third sector providers and charities, support groups etc.;
- Extending data flows for care plans, end of life plans, life stories, coping strategies, self-prescribing / medicating information;
- Scheduling of personal health and wellbeing activities such as keeping fit activities and appointments schedules with third sector providers etc.;
- Ability to link data associations from assisted living devices, tele-health and tele-care devices and solutions to that again may be acquired by patients by private purchases or through personal engagement with third party service providers.
These representing just some of the additional information that could be sourced directly from the citizen and / or their personal care circle that by virtue of association being known in the “citizen directory service” potentially provided back to health and social care providers to further help inform and shape the care delivery process.
Importantly, at this level the citizen (or person assigned power of attorney) is the data controller and owner of their information, thus resolving a significant data protection cost and engagement challenge for health and social care.
So What’s Likely in 2015?
The country is certainly more than one year away from securing the very significant efficiency, effectiveness and quality service improvements that could be achieved from patient access to medical information.
Perhaps not surprising given that since the announcement on patient access to medical records was made, there has been (and needed to be) a significant focus on the re-organisation of health care, that at best, patients will only be provided in 2015, with fairly rudimentary (read only) level of access to information and likely, primarily from just one source, the GP.
There is consequently the potential for a real and very significant problem emerging ironically from the re-organisation, which materialises from the devolution of control and responsibility for delivery down to a local level.
This because if it is agreed that a unified master patient index (citizen directory service) is a key foundation to progressing onto and integrated citizen centrically focused and bidirectional process of engagement, then this ought to be implemented to a national standard, and perhaps once?
With current technology supporting mobility for the population and rapidly emerging to support assisted living, tele-health and tele-care, the very process of caring and engaging in a patients care pathway / process is set to change dramatically.
Care closer to home is set to become a reality, technologies are emerging that can enable patient carers to become more engaged in the ongoing care process and management of conditions, along with technologies that also have the ability to increase levels of confidence for patients to live more independently.
Subsequently care, supported by the technology innovations emerging today, has the potential to become a true joint venture that engages personal care circles of family members, friends and personally engaged third sector charities or private sector providers of services and solutions with public funded health and social care service provision.
It is this potential that delivers the much need reform of the current health and social care model, certainly at a scale with potential to exceed achievement of £20bn of efficiency gains and savings.
Whilst there are benefits to initiatives having a local focus, so that variation in needs across communities can be accommodated there are some core elements that if not delivered as a national hub, must at least be supported by appropriate nationally agreed standards, addressing requirements such as interoperability, data / care pathway workflows to support engagement functioning across localities, however these are defined.
With that said, the patient / citizen user experience is another area for concern. With the potential benefits to be secure from engagement being undermined by patients / citizens experiences being widely different across the country, as features and capabilities vary as a result of variations in approaches.
But see, now this represents a case for some sort of nationally coordinated approach, and we’ve been there with the National Programme for IT (NPfIT), and if you believe everything you read that was a total failure, with nothing of any real benefit delivered.
But then maybe, the NHS SPINE, Summary Care Record and need for unifying the interface to offer citizens consistency in the engagement experience, if only there was an appetite to even consider the potential use of some of the NPfIT investments that did deliver?
What do you think?