By Dr Philip Ashworth, Chief Operating Officer and Co-Founder of PatientSource
There is a need, now more than ever, for organisations to be able to share information between systems and across organisational boundaries. The launch of sustainability and transformation partnerships (STPs) and ICS and the increasing occurrence of trust mergers, as well as the growing need for a multidisciplinary approach to treat patients who are often affected by co-morbidities, means that if we don’t then it is patient care that will suffer. It is essential for healthcare professionals across the full spectrum to have access to up-to-date patient records and for information to effectively and efficiently flow across systems and organisations.
Data lock-in – not as obvious as it seems
Now, this all seems obvious, but the answer is far from that. The NHS is plagued by systems that don’t talk to each other – a problem further compounded by the decision taken by some digital technology companies to lock-in data. In some instances, this data lock-in is obvious with clauses in contracts stipulating that the ownership of the data sits with that company and that company alone. But in other instances it is more underhand, with trusts only discovering at the end of their contract with a service provider that there are prolonged, difficult and expensive processes for them to retain their patients’ data.
There is the argument that some organisations may be looking to retain this data as a means of making a return on their investments, for innovation, afterall, is costly. But should this come at the expense of our cash-strapped NHS and the patients it is there to serve?
Matt Hancock, the Secretary of State for Health, believes not. He has finally recognised that suppliers interests “are too often not aligned with the NHS’ interests” and that contracts are “badly managed”, with buyers often being locked-in to long deals that prevent them from shopping elsewhere. He has said that only suppliers who adhere to “strict, mandated, open standards for interoperability of systems” will continue to do business with the NHS.
Now these are strong words from the secretary of state – words that will be welcomed by every clinician who has grappled with dozens of different IT systems in any given day. But, I’m sure that his words also trigger a sense of scepticism. It’s no easy task to introduce interoperability to all elements of the healthcare system. Change doesn’t happen overnight, contracts are in place for years if not decades and although there have certainly been steps in the right direction, particularly with the introduction of internationally-recognised tech and data standards by NHSX, there is still a long way to go.
We have learnt from the National Programme for IT (NPfIT) that change from top-down is very difficult and yet a bottom up approach can be slow and cumbersome. That said, directives such as the rumoured Department of Health ban on NHS trusts entering into deals in which they share patient information exclusively with one tech company would help.
Exclusivity clauses are unethical as much as they are underhand. They are all about protecting a company’s wealth and completely undermines what the NHS stands for – improving patient health. In barricading patient data for their own purposes, these companies, that are often the big names, are undermining the fundamentals of science and actually prevent scientific and medicinal discovery.
But, these issues are not just limited to the ring-fencing of patient data for research purposes. Some large tech firms undertake dishonourable practices when hospitals implement their tech solution. For example, we have heard some true horror stories of trusts wanting to terminate a contract and move to a new supplier and they are quite literally held to ransom by extortionately prohibitive costs and complicated processes, particularly with closed systems that have complex underlying data structures, and so not portable to other systems or reusable without significant investments.
Future proofing your decisions
When trusts are thinking of introducing a new IT solution, there is so much to think about that they often don’t consider what is going to happen at the end of the contract. It often only becomes evident at the end what the considerations are around your data, or your patient’s data, and how you safely take that to a new supplier.
As a clinician-founded and a clinician-led company, PatientSource takes the principles of the Hippocratic oath to its core. We uphold the pledge to do no harm and we take those principles into our software infrastructure, hence our overt open standards to data and the fact that our contracts state from the outset how you will get your data back at the end, should you ever decide you need to.
We are realistic enough to know that things change and organisations evolve and so there may come a time when you need to find a technology solution that we don’t supply. If that happens we don’t want to punish you and so we promise to transfer your data over to your new supplier at the going market rate.
We believe that we are unique in this position, but we don’t have to be – and we shouldn’t be. It is a choice of the individual company whether or not act ethically when it comes to the data it handles and afterall, shouldn’t we be putting patient needs first – afterall, it could be any one of us that is needing care.
