“In attempting to arrive at the truth, I have applied everywhere for information, but in scarcely an instance have I been able to obtain hospital records fit for any purposes of comparison.” This quote from Florence Nightingale in 1863 is worryingly still relevant today and was the focus of a discussion on interoperability during a session at e-Health Week on 4 May 2017.
What is INTEROPen
When it comes to data sharing, discussions often centre on the harm that can be done through sharing of patient data. Amir Mehkar, GP and co-founder of INTEROPen argued that it is not sharing data that causes the most harm. He explained that it is important to work together to create a common language around interoperability by encouraging commitment across suppliers, the NHS, Clinicians, and citizens. INTEROPen was founded to achieve this purpose.
The aim of the INTEROPen initiative is to define a set of national data standards to help the movement of data. This would look at setting rules around interactions between systems and creating a collaborative community for all things interoperability. Amir would like IT systems to be created where data is kept separately so purchasers are paying for the services rather than the data itself. It is hoped that this would prevent data from being owned by various systems and allow for easier movement. A further outcome would be the creation of a set of national FHIR profiles for organisations to use in their systems.
Representing the supplier side of the discussion, Paul Cooper outlined the supplier principles of techUK’s Interoperability Charter which aim to make information systems more open and easier to integrate and to enable the free-flow of patient information between products. Suppliers are committed
to ensuring that their information systems are neither financial nor technical obstacles, but are the enablers of change in support of integrated care.
In return, he said suppliers ask that the NHS and Local Government reciprocate by ensuring that standards are based on internationally recognised standards and are pragmatic, real-world requirements driven by business needs. Where accreditation is necessary, suppliers request that it is kept light-touch, proportionate, open to all, adequately resourced, and free.
Paul referenced a quote from Robert Wachter which said, “Bake interoperability in from the start”. He said although this is ideal, we need to be cognisant that suppliers need to retrofit a huge installed base of systems that are already deployed which will not be an easy task.
Ensuring that interoperability is clinically lead is the main function of the Professional Records Standards Body (PRSB), Dr Philip Scott, Technical Committee Chair, PRSB, explained. The PRSB aims to work with NHS Digital to turn clinical specifications into technical specifications. He said that interoperability alone would not be able to solve the three gaps outlined in the Five Year Forward View (the health and wellbeing gap, the care and quality gap, and the funding and efficiency gap). However, without interoperability, they were unlikely to be solved at all.
Importance of local opinion
Luke Redman, CIO Waltham Forest, Newham and Tower Hamlets CCG, said that there has been a long history of attempts to drive standards, some of them have been more effective than others. Local organisations have started sharing data and so we need to be conscious of constantly seeking local opinion. We need to look at building a social movement around this issue so that the focus is not a top-down approach but rather an opportunity to support local people to deliver what is needed.
The question and answer session that followed raised interesting questions around how to identify and police lack of compliance with the Interoperability Charter. Organisations seeing data as their Intellectual Property was raised as a real problem and it was proposed that the NHS should have a role in enforcement on their suppliers through smarter procurement to ensure good behaviour. Questions around who owns the data were raised and although it appeared to be a contentious issue, some agreement was found that patients should not only have the right to access their data but should also own it.
Safe and effective data sharing is one of the key programmes of focus for techUK’s Health and Social Care Programme.
As part of e-Health Week, techUK and INTEROPen held a joint session to discuss techUK’s priorities for the Health and Social Care Programme for 2017 and the future of interoperability. This is the second of two articles and summarises the discussion on interoperability.