“It's sensitive information, a lot of patients don't want to engage,” said Harpreet Sood, associate chief clinical information officer for NHS England, referring to the understandable reluctance of people to share their medical records. However, Sood also said that, when given an explanation of why sharing is necessary, that reluctance dissipates.
“We know through research that if we explain to patients the benefits and we engage with them, a lot of them are willing to share their records across the UK system, and they won’t worry. We just need to create the right construct for them,” he said.
One of the benefits of shared patient data is that NHS Trusts would be able to allocate resources in a better way by knowing where there are gaps in healthcare provision. Another is that researchers would be able to have a better understanding of the effectiveness of certain drugs, as well as higher incidence of particular conditions.
Sood stated that a key priority for the NHS moving forward is allowing patients access to the health records and getting them to manage their health records online because “the digital opportunities for patients are vast.”
Shared patient data that can move between different entities can be used for research purposes, but Sood said that there needs to be a unified approach. This was set out in 2014 in the Five Year Forward View, a 40-page document stating the vision of a future NHS and why it needs to change.
Patients will have full access to their data while retaining the right to opt-out of it being shared.
It laid out a new sector-wide approach to information technology adoption, led by a National Information Board. One key element of that is the comprehensive transparency of performance data. Another is fully-interoperable electronic health records which patients will have full access to, while retaining the right to opt-out of their records being shared electronically. A third element is the bringing together of hospital, GP, administrative and audit data, again with the right to opt-out.
Next Steps on the NHS Five Year Forward View was published in 2016 as an update to the initial document. Chapter 10 centres on harnessing technology and innovation and states that, over the next two years, the NHS will implement solutions that make patients’ medical information available to the right clinician wherever they are.
Sood, as a practicing clinician at University College Hospital in London, stressed his frustration at the current situation with patient data sitting in silos. He said: “A lot of my time is just spent chasing results, chasing images which I know exist, but I can't get access to because we never have the information there. Yet we can simply co-join the information, we know that the information that is shared can benefit everyone.”
However, the benefits of data sharing and the rights of patients to opt-out were not clearly expressed when the NHS tried to join up data a few years ago. In 2014, the NHS attempted to roll out Care.Data, a scheme to take patient data from GP records and add them to the national Health and Social Care Information Centre database.
But poor communication with the public and patients led to a fundamental lack of trust in the initiative and, specifically, extremely vague instructions on how to opt-out coupled with claims that "approved" organisations and individuals would be able to buy extracts of the dataset made the public suspicious. After two years it was scrapped.
"We didn't engage the public as effectively as we could have, so we had to close Care.Data.”
“Unfortunately, due to various pressures and the fact that we didn't engage the public as effectively as we could have, so we had to close the programme,” said Sood of Care.Data. Often in health policy there are statements made about how something can be improved, but they are not so good at explaining why sharing records across entities is a good thing, he said.
In an effort to show why sharing records is beneficial, at the end of March the NHS launched the Local Health and Care Record Exemplar programme, one of the strategies to integrate the health and care system. They are inviting regional health and care collaborative communities from across the country to share the records and information on between three and five million people.
“We're hoping that through those five areas, it will demonstrate to the rest of the nation how they have created their information governance, why are they sharing information across their patches and what is the benefit of that,” said Sood. In addition, last year the NHS Digital Academy was launched to train a new generation of chief information officers and chief clinical information officers to drive the digital transformation, as they will recognise into why the insight matters, as well as having an understanding of data governance, information governance data sharing.
Sood explained that digitisation is a cornerstone of the future NHS. He stated: “It is a core priority for where we're headed. We don't see the future of the NHS without a huge component being digital and that means things like electronic records, patient portals, and personal health records.”
Harpreet Sood was speaking at an event hosted by the Department of Health Policy of the London School of Economics and the Institute of Global Health Innovation of Imperial College London.