The Fringe event - Health and Technology: How can data save lives? - saw the following speakers debate:
- Shadow Health Secretary Diane Abbott
- Shadow Digital Economy Minister Chi Onwurah
- Dr Mike Fisher, Chief Clinical Information Officer, Royal Liverpool and Broadgreen University
- Andy Kinnear, Chair, BCS Health & Care and Director of Digital Transformation at NHS South, Central and West Commissioning Unit
The event was hosted by Prospect magazine and BCS, the Chartered Institute for IT, and proceedings were chaired by Jon Bernsten, Associate Editor of Prospect.
Beginning her remarks, Ms Abbott said ‘I welcome using technology to save time in the NHS’, but cautioned that there were a number of concerns around privacy and security. ‘If we're going to do more data sharing, we must acknowledge the sensitivity of that data’, she argued.
With greater private sector involvement in the NHS, Ms Abbott raised the prospect of a company such as Virgin Healthcare harvesting healthcare data and sharing it with other parts of the Virgin Group for commercial benefit.
She said that no network was completely secure and affirmed that private companies should not be in charge of handling patient data.
Ms Abbott cited a recent study that had demonstrated that 66 per cent of existing NHS apps did not use encryption and 20 per cent not provide a security policy.
As more data was collected the risks of leaks and breaches only increased, she said, arguing that the NHS historically had a woeful record in delivering IT programmes.
Acknowledging that technology like smart phones had a role to play, for example in enabling doctors to diagnose a patient remotely, Ms Abbott said that ‘the elderly use the NHS most - and they're hardly likely to chat to their doctor on Skype’. The personal interactions between clinicians and patients should not be dismissed entirely, as in some instances this might inhibit open discussions and hinder accurate diagnoses.
Ms Onwurah began by referencing a Commons debate on the digital economy the previous week in which the newly-appointed Culture, Media and Sport Secretary Karen Bradley had commented that ‘we are living in a digital economy’. She agreed with this sentiment but pointed out that it was one driven by data, which was at the very heart of so many new products, services and apps, not just in private sector but also in the public sector.
People generally had little or no choice when it comes to public services, she said, and for this reason protecting their data and giving them agency over it was fundamental.
Ms Onwurah described herself as a ‘huge believer in the progressive power of technology’ and the potential of ‘digital government for everyone’. ‘The old model of an ‘unresponsive state’ could be ‘be transformed into a personalised, empowering state using data’, she argued, creating faster and more efficient public services in the process.
In the NHS especially, data had the potential to help millions providing earlier and better diagnosis and more independent living, she said. However, she added that people must feel that they had control and with care.data that confidence had not been secured.
If that security and confidence was not provided then the risk was that there would be a regressive world where people feel that the government is holding their data against their will and without their say, she said.
There were real privacy concerns, Ms Onwurah cautioned, as health data was a huge target for cyber criminals. She noted that there had been more attacks on health than corporate institutions in the past year.
The Caldicott principles applying to the handling of patient-identifiable information are too vague and too open to interpretation, she argued, and most people have never heard of them.
It was confusing that there were different data handling frameworks for different parts of government like health, local government, HMRC, she said, and called for a unified and clear framework to improve public confidence.
She added that the Digital Economy Bill made it easier for the Government to share data without setting those government wide principles.
Dr Mike Fisher
Beginning his remarks, Dr Fisher said that ‘data, machines and computers do not save lives’ and that ‘data has to be processed into knowledge to save lives’.
‘Data’ should not be thought merely of single items of information, but as the systems that bring it together, identify correlations and build knowledge from it, he said.
He said that his patients were shocked that data was not automatically shared between GPs and hospitals and were not aware of the regulatory boundaries that practitioners faced in accessing and sharing data.
He quoted Google CEO and co-founder Larry Page, who had said that fear of data mining of healthcare meant that 100,000 lives a year were unnecessarily lost.
Further, he argued that healthcare still worked to a traditional model of medicine founded in 18th and 19th centuries based on treating infectious diseases, as seen in the language of ‘beating cancer’ or ‘fighting heart disease’.
The reality was that contemporary medicine was more about treating and managing chronic and long-term conditions, he said, arguing that ‘we need to stop herding people into the disease palaces’ of hospitals that often made them more ill. Data and technology provided the opportunity to remake medicine more than anything else, he said.
This new model would not mean that hospitals would go away, he said, as there would always be a need for complex operations for example. However, they would have to change to ‘become more of a command and control centre for treating people in other places’ through the adoption of telemedicine, care in the community and treating people in their own home.
Mr Kinnear began by stating that he began his career as an information analyst in the NHS, and as such ‘came into the NHS believing that data saves lives - and I've seen nothing to sway me from that’.
Clinicians make decisions day in day out based on data, so it followed logically that the more data that could be provided the better those clinical decisions will be, he argued. He asked why, if it was evident that greater data collection and its use had the potential to radically improve the NHS, it had not happened already.
He said that there were three principles that explained this.
Firstly, ‘technical reasons’ meant it was difficult to leverage full value out of medical data unless it was digitised and therefore easy to share and analyse. The NHS was still far too reliant on paper-based collection, he said.
Second was the organisational complexity of the NHS and the difficulties this presented in sharing data between and across the myriad organisations like hospital trusts, CCGs and mental health trusts that operated under the NHS umbrella.
Thirdly, policymakers had failed to empower the public to handle their own data, he argued, suggesting that health was behind areas like banking in this area. This would only be transcended when the organisational issues with data collection across the NHS were addressed, he said.
Pointing to an example that had worked, Mr Kinnear mentioned the ‘Connecting Care’ programme in Bristol, in which data was collected and shared across the various NHS functions like GPs, hospitals and mental health institutions. He cited the example of an out of hours GP in Bristol who had benefitted greatly from this, stating that on multiple occasions he had made different care decisions than he otherwise would have based on the data he now had access to.
Questions and Answers
An attendee asked about the importance of assigning greater demographic information to health care data.
Ms Onwurah agreed that the potential benefits of this were huge, but said this did not address the fundamental question of ownership, as more demographic identifiers assigned to data also made it easier to triangulate and identify the individual to which it related.
A representative of Microsoft asked about public sentiment on the issue, citing a Wellcome Trust report that showed that 88 per cent of respondents were happy to share their health data if they felt that it would improve outcomes.
Ms Onwurah said that people ‘loved the NHS and there was a big reservoir of goodwill’ which could be used as vehicle to promote more data sharing and ensure greater public consent. However, sensationalist tabloid reporting of the issue had the potential to undermine this significantly. She argued: ‘We need to give people more assurances that their anonymised data will remain anonymous’.
A representative of National Energy Action mentioned the health issues caused by cold homes and asked about data sharing in organisations outside of the NHS to help identify those at risk and deliver greater preventative interventions.
Ms Onwurah repeated her view that the clear principles and a single framework for data sharing were essential, but agreed that the potential to identify and target resources and benefits at individuals using their data was significant.
Discussing the issue of consent, Dr Fisher said that patients were frustrated when they learned of the barriers preventing various parts of the NHS sharing their data. However, there were legitimate concerns regarding ‘secondary use’ when the NHS or other parts of government shared their data with private sector organisations, he stressed.
Discussing the risks of triangulation and re-identification of an individual’s data, Dr Fisher said there was not a technical solution to this issue, and there may actually be greater difficulty in doing this as the number of data points grew and the complexity of the sets held by the NHS grew.
An attendee asked about the problem of defining the word ‘data’. This lack of definition inhibited public debate on the issue, he argued.
Mr Kinnear said that the word itself was a ‘turn off’. The way this could be addressed this was to ‘take out the techno speak’ and place the emphasis on the benefits in terms of improve care and outcomes.
An attendee asked about the issues with individuals obtaining their own medical data from the NHS.
Mr Kinnear said NHS Digital was looking at this, and argued that there were some benefits to individuals being able to bring their records with them as they used different parts of the NHS. However, paper records were inherently static and the key issue was to ensure that records were not simply snapshots and readily accessible to all parts of the healthcare system than an individual might enter.
Dr Fisher said that an entire hard copy of a patient’s record was essentially useless. It was about creating a system using cloud computing to create a live dataset that is readily accessible by clinicians when and where they require it.
The representative of National Energy Action raised the issue of costs on the NHS associated with treating conditions caused by cold homes and asked whether the data collection schemes using opt-in rather than opt-out ran the risk of reducing take up to such an extent that the data collected could not be as useful or insightful.
Mr Kinnear agreed, adding that there were difficulties in encouraging different organisations to work together and to incur costs when the benefits were not immediately obvious to them, but might be profound for other parts of the NHS.
Dr Fisher said that there were already areas in which ‘our privacy can be breached for the greater good’, noting that clinicians already were required to share individual’s data with other parts of government, for example informing the DVLA when a patient is diagnosed with epilepsy but refuses to cease driving.
On the subject of technology use in the NHS and the loss of personal interactions, Mr Kinnear mentioned a University Hospital Southampton NHS Trust scheme in which recovering prostate cancer patients, many of whom were elderly, had been given iPad to help manage their care. This showed that after the initial diagnosis period - which often did require a face-to-face discussion - technology did have a significant role to play.
An attendee asked about how to combat paranoia around data sharing.
Ms Abbott said that if people did not have assurances about the collection and use of their medical doctor, they would tell doctors less and this could cause real harm as they would not receive accurate diagnoses and the appropriate care.
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