Health data has the power to boost patient care and save lives. In the first of a two-part series, Kathy Oxtoby looks at how the information that provides a blueprint for a person’s condition is used, stored, accessed, and kept safe and secure.
Health data is used by many GP practices and hospital trusts to improve patient management, care and experience. During the pandemic, the benefit of having access to patients' treatments and long-term conditions proved to be a valuable source of information and insight into patients’ needs.
These patient datasets can also include information on A&E attendances, outpatient appointments as well as emergency and elective admission to NHS hospitals.
According to Rob O’Neill, head of information, University Hospitals of Morecambe Bay NHS Foundation Trust, health data is "the golden thread that runs right through the hospital – from patients up to the board level – and we can enable people to make data-driven decisions in all care settings.”
- Further reading: Ten ways artificial intelligence is transforming healthcare
In 2019, the trust created a ‘Command Centre’ using software from data analytics solutions company Qlik to provide analysis of the emergency department, insights into ambulances on the way to the hospital, and availability of beds, in real-time.
This allows staff to continuously assess resources against demand, predict when surges in demand may happen and streamline the patient experience. In turn, this has helped the reduce delays, and has increased the percentage of patients triaged within 15 minutes from 65% to 95%.
The scheme is just one of an ever-increasing number of examples of how health data saves lives.
Health data is a blueprint for a person’s condition
Health data provides “a blueprint for a person's condition and the potential risks associated with the patient”, says Adam Mayer, senior manager at Qlik.
“Every action a healthcare provider, administrator or patient takes creates new information, while healthtech devices concurrently capture vast volumes of data, from every heartbeat to fluctuations in insulin levels,” he says.
In its broadest sense, health data is “any information that is related to an individual’s health and care”, says Melissa Lewis-Brown, science manager at Health Data Research UK (HDR UK), the national institute for health data science.
“Every day, huge amounts of health data are generated by the NHS and other health and care services, and from other sources such as research projects and clinical trials,” she says.
Ms Lewis-Brown explains some of this data is very general – births, deaths and hospital admission statistics, for example – while other types are very personal, such as individual medical records, genetic data, test results and scans.
“The power in health data research comes from linking these large datasets together and running sophisticated analyses to spot patterns and gain new insights to improve health and care,” she says.
Health data is gathered by a wide range of organisations – known as data custodians – including the NHS, the Office of National Statistics, academic research institutions, health charities, private companies, and more.
Health data ensures that people stay healthy
Health data is primarily used for clinical care. Dr Michelle Tempest, partner for life science and healthcare consultancy Candesic, says the main use of health data is “to ensure that people stay healthy”.
“When we check people’s health data we’re looking for what’s normal and abnormal so we can help and treat them,” she says.
Health data is also used outside clinical care. Typically referred to as ‘secondary uses’ of health data, this will include information that is used by analysts inside and outside the NHS for research, as part of the planning or improvement of NHS services, and to help evaluate services and policy changes.
“At the Health Foundation, we frequently use de-identified health data as part of our analytics projects through which we seek to help tackle real world problems in health and social care,” says Kathryn Dreyer, a senior analytical manager, data analytics team, the Health Foundation.
Evaluating enhanced support for nursing and residential homes is an example of the studies the Foundation is able to conduct by using this data. The Improvement Analytics Unit, a partnership between the Health Foundation and NHS England and NHS Improvement, uses health data as part of rapid quantitative evaluations. For example, the unit used health data to evaluate an enhanced support package for nursing or residential care homes in Wakefield,” Ms Dreyer says.
David Maguire, a senior analyst in the King’s Fund policy team, says many of the think tank’s publications rely on secondary data. “In our recent long read on critical care services, we drew from a few datasets, including the national Hospital Episode Statistics dataset, and the monthly NHS England collection on critical care bed use,” he says.
Importance of monitoring health data quality
The quality of health data “is incredibly important to ensure that insights, actions, policies and products are reliable - as the tech saying goes, ‘garbage in, garbage out’”, says Ms Lewis-Brown.
Currently, she says there are not widely used quality or format standards for health data, so HDR UK is “working with the research community and data custodians to establish open standards for data that everyone can work with and adhere to.
One of the difficulties with trying to standardise data is that some of it is “inherently subjective”, says Mr Maguire. ”Unlike [measuring] heart rates and blood pressure, if you ask someone how they’re feeling, for example with regards to their mental health, that’s subjective – a person’s opinion of their health state,” he says.
Issues with storing and accessing health data
Health data should always be stored safely and securely. It is usually stored by the organisation that created it - the data custodian. Ms Tempest says that traditionally patients’ health data is gathered by those who are treating them, so naturally it is stored in the GP surgery or the hospital. Only patients and healthcare professionals involved directly in a patient’s treatment should have access to a patient’s care record.
The storing and sharing of data between NHS networks are governed by NHS Digital, the national information and technology partner, to ensure it meets the stringent security and privacy requirements needed for such sensitive information.
Access for reasons other than clinical care by such organisations as NHS commissioners, university researchers and charities should only be granted for a specific approved purpose, Ms Dreyer says.
Ms Lewis-Brown says there is “a lot of work going on right now” in the health data research community to develop ways of safely and securely accessing health data for research, such as ‘Trusted Research Environments’. “These are highly secure online environments where approved researchers can access and work with datasets but can only take away the results of their analysis rather than the original data itself,” she explains.
Managing security challenges faced by health data
When it comes to health data security, the majority of people are confident in the NHS to protect and use their data, according to a 2018 survey by consumer health and social care body, Healthwatch England. The findings indicate a high level of trust in the NHS’s ability to keep the public’s information secure. This is despite privacy scares brought to light in the Facebook/Cambridge Analytica scandal and the WannaCry attack that took out large swathes of NHS trusts.
To help NHS and public sector organisations to handle cyber threats, this August NHS Digital launched a new framework, which can be used to procure external support and services to assist in managing cyber security risks, increase resilience, and recover in the event of an incident.
Two main security challenges around health data are ensuring that individuals cannot be identified unless there is a specific reason related to their care, and preventing data from falling into the wrong hands. Ms Lewis-Brown says HDR UK is working across the UK health data research community to make sure data access to research is safe, including ensuring data is appropriate, ethical, that the researchers can be trusted to use the data appropriately and that it has been suitably deidentified or anonymised.
But she stresses that at the same time, “we need to ensure that this is done in an efficient and timely way. We must avoid making the process for accessing health data for research so slow and cumbersome that it inhibits progress. This is particularly important when speed is of the essence, such as during the Covid-19 pandemic”.
In the wake of the pandemic, ways that health data can benefit the population have come to the fore, and during these uncertain times will continue to be a valuable source of information and insight into patients’ needs. As Ms Tempest says: “Health data is even more precious than financial data, because it’s about people’s lives.”
For more news and articles on health data go to our Health Technology section