Planning for crisis - sharing data, and building systems that are resilient

Dr. Michael von Bertele, non-executive director of Rutherford Health and Salisbury NHS foundation trust in the UK, writes about the ways we can build systems to avert critical situations, and be better prepared.
10:04 AM

The extreme measures taken by the Department of Health in England to allow the NHS to switch its focus to the critical care needed to manage seriously ill COVID-19 patients have exposed several fundamental weaknesses in their IT systems, and in particular their ability to share patient data outside of the NHS. The key to contingency planning is to identify vulnerabilities before they become critical, and then to put in place the measures that might prevent system failures. The inability to treat a patient because data cannot be shared or because a capability becomes unavailable is a system failure. Nowhere is this more critical than in the management of patients with cancer.

Working with private providers

At the outset of the crisis private beds were given up by the private sector with the intent of creating COVID-free hospitals where cancer treatment could continue. But the cancer pathway does not occur in a single place; patients must attend for diagnostic tests, imaging, bloods and physical examinations. These must be collated in one place before review by the clinicians and multi-disciplinary teams who will determine the kind of care needed. It might require surgery, chemotherapy, or radiotherapy, or a combination of all three. Usually this is managed by the local trust that coordinates that care, with radiotherapy often being delivered in a specialist centre. But it soon became obvious that it is not easy to transfer all of the notes, results and data files from an NHS hospital to a private provider. Even the basic patient records are not usually held on compatible systems. Lab and imaging run on separate systems, and planning scans for radiotherapy are usually only held in the centre that carries out the radiotherapy. This has resulted in a mass of ad hoc solutions and a massive transfer of paper notes between NHS and private providers, with the resulting potential for confusion, delay and loss. 

It does not have to be like that, and an indication of what the future might look like can be seen in the systems being developed by the cancer treatment provider, Rutherford Health (RH). RH has developed 4 centres in the UK where patients can receive radiotherapy and the more advanced treatment of Proton Beam Therapy (PBT). Unlike conventional radiotherapy which uses photons to kill cancer cells, PBT uses a narrow beam of protons that can be minutely controlled to release their energy and kill cancer cells with great precision, minimising or eliminating the collateral damage caused by photons. The snag is that PBT machines are expensive to build and maintain, and there is only one place where the NHS delivers this, the Christie hospital in Manchester. If that machine fails, patients who are expecting PBT must either revert to photon therapy, wait, or go abroad for their treatment. Travelling abroad (where sharing of data is hundreds of times worse than with UK-based health companies) requires a fresh treatment plan, adding to delay and cost. During the current crisis that is not an option. 

Sharing data effectively

Recognising the potential for equipment failure at its inception, Rutherford Health have designed the first networked multi-centre PBT system in the world. Patients receiving radiotherapy or PBT in one of Rutherford’s centres have their planning scans assessed by a panel of experts, and they are then stored centrally, in their own secure private cloud. If a machine fails in one centre, the patient can be moved, usually within hours, to another centre, where the machines have been precisely calibrated in the same way, and the plan can be immediately accessed and used to continue treatment. Radiotherapy plans can be shared in the same way.  Rutherford can also receive treatment plans from the NHS and adapt them rapidly to enable the plan to be delivered in one of their centres. They have offered access to this shared planning system to the NHS but at present there are no plans to take up the offer. The NHS has no backup plan other than treating on photons. Service level agreements are already in place between some private providers to enable this seamless transfer of data for radiotherapy, but it will continue to disadvantage NHS patients if no thought is given to contingency planning for the future.  

There is no easy solution to data sharing across systems and between different users once those systems have been put in place. To some extent it must be designed in, and private providers are well placed to do that, especially if starting from scratch. Some principals are universal though, and the NHS sets out standards for connectivity and security. Ideally connection to the health and social care network (HSCN) would be the standard for any provider wanting to receive NHS data. The reality is that even then there are too many different systems that do not have common sharing protocols. By designing and adopting an integration bus Rutherford Health will be able to route all data from every IT system through a single common pathway that will eliminate the need to constantly update each system every time a new application is added. Their IT systems also allow the sharing of all resources from a single high grade secure managed data centre across multiple sites. This gives them a unique, highly differentiated, competitive advantage as new centres can be added for very little additional IT cost. All patient data and system software can be shared, allowing clinical specialists to review or assist in patient treatment at other centres without the need to travel or waste valuable time. The central design confers other benefits to the business including efficient utilisation of expensive licenses, single systems testing and upgrades, that benefit all sites in parallel and cuts costs and saves some specialist clinical staff.

The systems have been designed specifically in a modular fashion, with clear and defined separation to allow easy change and development in the future of systems procured today to ensure they remain best in class. As oncology becomes more reliant on technology to drive innovation, such flexibility will allow new technologies to be deployed rapidly into the system. All the supporting systems and new systems are designed to plug into a modern and agile technology frame. Once the single connection is added all systems and sites benefit from these additional resources and systems. This modern technology frame uses virtual solutions, which makes adding in IT resources a simple task that can happen in real-time. A private secure cloud solution provides flexibility and security and has been designed in such a way that there is no disruption once a secure public cloud takes over. It also allows secure remote working and access to web-based applications that assist remote clinical staff with quick, reliable and secure patient flow, reducing time from referral to treatment significantly, and ultimately leading to better outcomes and improved patient experience.

Preparing for the potential second wave of coronavirus

As the COVID-19 pandemic has shown, the NHS will at times have to rely on private providers to pick up aspects of routine patient care and fill critical capabilities.  This is not business as usual and the opportunity must be taken to identify where patients have been let down because it was not possible to transfer their care safely to another provider, even when the capability to deliver that care existed. Critical capability gaps should be identified and solutions provided that would allow sharing of the information that is necessary for care to be continued. The private sector is better placed to lead that work as the receiver and manager of the information, but the NHS must engage with private providers to agree and test plans to do it before the next COVID-19 outbreak demands it. They must assign priority to those capabilities where there really is no redundancy within the NHS, in the same way that the government protects the rest of our critical infrastructure.