The concept of personal data management isn’t one which sets the pulse racing. But, as solutions providers unveil their plans for cloud computing, the technology could pioneer a new approach for the NHS to manage patient data, which puts the service user at the heart of the system, says Mike Denis.
The idea of being able to store and access your personal collection of music, photos and other files from whatever PC, tablet or other mobile device you happen to be using is nothing new. But given that the technology exists to enable this to happen, you have to wonder why we aren’t offering people the same choice when it comes to their personal healthcare information.
That could soon be about to change, as the NHS is beginning to learn from and follow the path of the US in developing health information systems which are based around the patient.
This is a sea change that has taken a while to come about. When healthcare information systems were first introduced within the NHS they were designed to serve the needs of an organisation. Initiatives emerged like resource management, which led to the design of systems to follow individual clinical staff and look at the cost of that activity.
But it became clear that this approach wasn’t actually helping clinicians and clinical services. And so we started to see greater clinical involvement in the development of new health information systems to support the clinical process. And this, in turn, resulted in the various electronic medical record systems that have evolved across the NHS over the last decade.
We’re now talking less about the need for information systems and more about the use of data and how you can transform that data into information and intelligence to drive transformative health programmes. This means that the next generation of IT systems are going to be more about an eco system of information co-existing rather than continual development of single systems.
An example of this concept in action at the National Institute for Health Research Biomedical Research Centre for Mental Health is a new technological application which enables researchers to search the 170,000 entries on South London and Maudsley Foundation Trust’s electronic patient records system at the touch of a button.
This Case Register Interactive Search system means that automated, anonymised searches are possible on structured and unstructured information contained in case notes, vastly accelerating and expanding the scope for research. Researchers can test an idea in seconds rather than months, liberating them to pursue research questions more quickly and cost effectively.
We are now implementing systems, such as Microsoft HealthVault, with patients in mind as a user, and engaging them in the design process as an equal partner with clinicians. That’s a massive change and a great opportunity because ultimately patients want to be at the centre of their health and health management. Information systems have a key role to play and the use of data and information flows will be central to that.
By partnering with Microsoft we have been able to make available a personal online health record for patients that will empower them to shape and influence their treatment plans, a world first for mental health care. The idea is a system in which the specialist mental health clinician, the patient and his or her GP are all able to collaborate through the on-line health record with secure access enabled and controlled by the patient.
This is about encouraging a more equal dialogue between patient and clinician and improving the nature of the relationship. Our ambition is that we will transform the individual patient experience from being a passive recipient of health service provision and passive recipient of information that’s handed over to them, to one where a patient is far better informed about and involved in his or her own health condition and care plan.
This is not just about systems and IT. It’s about people and relationships, and using IT to help foster a new kind of dialogue between patients and clinicians.
What links organisations, clinicians and patients is a shared desire to achieve positive outcomes. So we shift the emphasis of systems from measuring inputs and activities associated with them to a much greater focus on outcomes. Everything we’re doing in designing new health systems is to achieve that focus.
The experience of places like the US is that there’s a huge appetite among patients to understand their own condition better and to become the “expert” patient. Once I’m informed as a patient, part of the patient experience will be to understand what my choices are in terms of service opportunity. No longer will I just sit back and be told by clinicians in a clinical team that this is the service that I will receive. I’m going to want to be able to have some discussion about the different options and I’m going to be asking questions about the outcomes associated with those options.
If we make the right moves, then information technology has the potential to be at the heart of this empowerment revolution. By transforming the way information is accessed, collected, and used by the NHS we will give people more control and greater choice about their care.