When plans for the future of healthcare in the UK were recently announced, one of their central aims was to bring NHS resources and decision-making "as close to the patient as possible."
The phrase “no decision about me, without me” not only provides a neat sound-bite to encapsulate the message, but it also casually condenses a multitude of major challenges into just six words.
Moreover, it throws down the gauntlet to stakeholders across the marketplace that those responsible for designing and implementing health informatics systems need to raise their game.
Rising to the challenge
Although IT itself cannot lead change, its suppliers can show leadership and influence others to drive cultural change.
The most effective suppliers will add true value to the dialogue. They will have an intrinsic understanding of the NHS and how it operates at senior levels – and will be able to contribute meaningfully to discussions around service design because of it.
There are savvy suppliers out there already working with the NHS – and patients – to enable healthcare to be provided in new and innovative ways.
The challenges ahead are significant. The 'Liberating the NHS' white paper identifies information, combined with the right support, as being the key to better care, better outcomes and reduced costs.
It speaks of an environment where patients have sufficient data on all aspects of healthcare to enable them to share in decisions made about their care.
Moreover, it promises to correct an ‘imbalance in who knows what’, to give patients access to their own records, and, furthermore, to enable them to communicate with clinicians online. These are all worthy goals; but as of 2011 they remain some way distant.
The emerging customer
Against this backdrop of radical and ambitious reform, much of the current architecture for health informatics in the UK is not yet in place. Improving it is a collective responsibility; for clinicians, for NHS management, for back office suppliers, and, most of all, for patients.
The emergence of the patient as being central in the development and delivery of health care services is no longer rhetoric. But until the market as a whole recognises this and takes a holistic approach to the development of services to support the white paper's ambitions by engaging all key stakeholders and influencers, the potential for success is reduced.
It is time for a shift in our cultural mindset. Clinicians, administrators, informatics experts, suppliers and patients must all work together to make the information revolution – and indeed the patient revolution – happen. This is about changing attitudes as much as it is about changing technology. The development process must be consultative and inclusive.
Technology in the revolution
IT can play a major role in driving, facilitating and delivering change, but plans for any new architecture must capture input from all stakeholders right at the outset. And that must include the patient.
For too long, informatics has had the clinician as its primary customer, but as patients begin to take more responsibility for their health and shared decision-making becomes the norm, it is clearly time for a rethink.
In tomorrow’s world, the end-user is as much the patient as it is the doctor. To correct the imbalance, the tools being used must change to reflect this.
Making the patient’s needs central to the process – and building that patient’s needs into every stage of the development of a service – its design, implementation and evaluation, has to be the way forward.
The teaching of medicine and nursing has traditionally been focused on relieving the burden of care from the patient, but there is strong argument to suggest that increasing the involvement of the patient in their own care will bring better outcomes.
Medical and nursing education does not currently teach people how to use health tools with patients, partner with patients or empower them using health information and this will need to change moving forward.
It is here where technology suppliers can play a valuable role. They understand patients’ perspectives and how their use of health IT is likely to grow in the future.
Supplier expertise in providing packages for patient care is there to be exploited. Those who best understand patient needs should be involved at the earliest possible stages in the development of any service, rather than simply brought in at the compliance end of things.
The key voice
The approach is perhaps best exemplified by developments at the National Institute for Health and Clinical Excellence, which, as we know, has been appointed the arbiter of effectiveness, usefulness and quality.
Charged with responsibility for designing around 150 quality standards in the next five years, NICE has identified the patient experience as being central to this work. It requests that when new systems are being implemented, patients are consulted to establish the relevance and value of any changes.
This is a fundamental requirement of the implementation of NICE guidelines – and the same should approach should be taken in the development and implementation of health informatics systems to support them.
This is certainly the case at those technology suppliers who are already aware of the role they have to play and routinely consult the patient in all plans for the implementation of NICE guidance. It’s a commitment to the spirit of “nothing about me, without me.”
And so, as the health sector approaches the NHS Information Revolution promised by its government, it’s clear that consultation phases engaging all stakeholders involved in the design and delivery of health services is paramount. Key voices, not least those belonging to patients and technology suppliers, must no longer be excluded from the process.
Success will not be won by technology alone. For real change to take place, collective buy-in to the wider principles of the empowered patient must be achieved.
Clinicians, suppliers and patients must engage and collaborate to identify the most effective and efficient ways to improve health outcomes.
A clear roadmap must be agreed up front before beginning the process of supporting it with an implementation. If we do things the other way around – as has often been the case in the past – we will not succeed. “Nothing about me, without me.” It makes sense on every level.
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