NHS Digital “working through” healthcare IoT complexity
Beverly Bryant calls for discussions on complicated concerns around defining liability for prescribing sensor-led care amidst wider challenges in gaining patient trust on health data governance
As NHS Digital begins to consider options for incorporating the use of wearable and smart devices to support aims for more personalised care, the organisation’s digital transformation director believes it is vital to introduce a means of allowing patients to individually control how their data is used.
Speaking in London at a seminar on the future for IT, data and patient records in the NHS, Beverly Bryant argued that patients must be in control of and understand how their personal data, which would underpin potential Internet of Things (IoT) innovations, is used. However, she accepted that the final structure of such an arrangement remained a complex issue, with authorities still reviewing a consultation on new models for consent after a previous flagship data sharing project collapsed last year.
“[The patient] will decide and choose what happens to their data about them. However, there are complications and the National Data Guardian review is looking how, as a society, we can improve health services and use the data that we have,” she said.
Since NHS England announced in July that it would be dropping its care.data project, which was designed to make use of patient data extracted from GP records with the aim of informing clinical planning and other health initiatives, authorities have yet to respond to a consultation on sharing information and allowing individuals to opt out from sharing.
Patient data is seen as a key component of NHS England’s 'Five Year Forward View' plan for pursuing closer integration of health and social care through technology and information sharing to better handle operational and cost pressures facing the NHS.
To help meet these aims, Bryant outlined considerations for the potential use of wearable devices and IoT to support patients to better manage their care, based on the data they generate.
“This has a huge potential for patients, for frontline staff and for the system. We could reduce hospital stays when people are only staying in for supervision,” she said.
Drug compliance was another area that could be managed through smart technology in order to support patient self management of recurring conditions.
Bryant argued that governance around liability for both the data and decisions made around sensor-led technology would need to be finalised if IoT technologies are to be prescribed by staff. Although a complex issue, she said it was in the process of being worked through.
She said, “Why can’t we have a discussion about the future potential of technology, but at the same time have a talk about how we make sure to do this in a safe way with consent so that individuals and clinicians know what they are getting into?”
With the insurance industry already making moves into using data from wearable sensors to provide more tailored products to customers that can demonstrate healthier or more active lifestyles, delegates asked about the implications for IoT innovation in the public sector.
Bryant argued that considering the NHS’ previous experiences with care.data and lack of a joined up plan to better ensure openness in sharing information, it was vital to go slowly with future information-led focuses that therefore could not have any links with insurance companies.
“I don’t think it’s a good idea and no one in my organisation thinks it's a good idea to go anywhere near insurance companies until we have got to a point where the public trust us to hold and transfer their information and data,” she said.
“I realise that might not be the forward thinking view that some might think I ought to have, but right now are just not ready to move there.”
Also speaking during the summit was Will Smart, NHS England’s chief information officer, who identified public trust as a key issue needing to be addressed alongside more technical concerns such as architecture. He said that trust related both to issues of security of the information being held in NHS systems, as well as how it is used, if at all, for purposes beyond direct care.
Smart argued that other key aims for the organisation would include dealing with the review by National Data Guardian Dame Fiona Caldicott released last year calling for a new, simplified model of patient consent for sharing their information for future projects. These projects include any potential replacement or successor to the care.data programme.
NHS England is also looking at the broader relationship between patients and the NHS, especially in demonstrating how their data can be used, while deciding what is needed to support these reforms from both a policy and technology standpoint.
Smart said this would include preventing unauthorised access to information and respecting a patient’s individual data preferences for how data can be shared, while also making them clearly aware of the consequences of these preferences. NHS England will continue to work on informing stakeholders, such as frontline clinical staff, around the best practice for information governance and standards for handling most the most sensitive datasets.
Should these objectives be met, Smart said that it would be possible to hook up its service to support wider self care and prevention aims, as well as allowing patients to access their records via apps and make use of additional services to reduce the pressure on hospitals and front line staff.
“There are various strands of work happening at the minute around NHS.UK, I’m not allowed to call it an app store, but I think it’s an app shelf in NHS.UK parlance. This will begin to allow patients to become more active participants in their healthcare rather than it being a very one way street,” he said.
Some privacy campaigners, while backing the transparent, consensual flow of patient data in the NHS, have maintained that Whitehall is failing to learn key lessons over the previous failure to launch care.data.
Moving forward, it is understood that among the key privacy considerations facing NHS England, a decision needs to be taken on whether patients should be provided with either one or two questions concerning how they would wish to share personal information for purposes other than direct care. Research is one such example. Yet delegates at the same summit noted that the exact definitions of work that might constitute health research was another issue health authorities and the government needed to finalise.