NHS National Services Scotland is attempting to streamline care and research by digitising and sharing anonymised patient data taken from general practices.
With the launch of SPIRE (the Scottish Primary Care Information Resource), it will be easier for GP records to be shared with NHS organisations and researchers, so that it can be used to understand and improve the quality of healthcare.
DIGIT spoke to Dr. Claudia Pagliari, Programme Director of the MSc in Global eHealth and Convener of the eHealth Interdisciplinary Research Group at the University of Edinburgh, to get her thoughts on the new initiative.
Dr. Pagliari is a specialist on how patients, professionals and organisations react to health technologies and whether related health policies are responsible and ethical.
She began by assuring that the collection of patients’ data by the NHS was nothing new, but its applicability has been limited.
She said: “Information about people’s visits to their family doctor is already captured on computer systems within GP surgeries, and has been for a long time.”
“A small amount of this information has been routinely sent to health boards to enable quality assessment or to manage risks of infectious diseases, but the vast majority has been ‘locked-up’ in these systems, limiting the ability of the NHS and researchers to study and learn from it. This contrasts with the situation in hospitals, where patient data has been used for audit, research and planning for many years. This is partly due to the fact that GP practices now operate rather like private businesses and most have been reluctant to share their information, but it also has to do with the information systems used in primary care. “
Dr Pagliari also explained why general practice data is so important for research:
“General Practice is the first point of care for most people, and is often the part of the NHS where people with chronic or complex health needs are seen most regularly. It is also the only place, at least for most people, where a lifelong record of our health is kept. For this reason, the information stored in GP systems may potentially be even more useful for understanding health issues than information obtained in hospitals, which people tend to visit less often and tends to focus on a single condition or treatment.”
Dr Claudia Pagliari
“SPIRE will help Scottish researchers by providing a convenient means of pulling out structured and coded information on things like demographics, diagnoses, prescriptions and treatments, which can be linked with other sorts of data, such as hospital admissions or social care records, to evaluate the effects of healthcare processes and treatments and to understand health conditions, causes and consequences.”
“Currently only about 6% of GP practices – those who participate in the ‘Practice Team Information’ scheme – are incentivised to submit detailed coded data to NHS Scotland. Several external, often private, agencies have managed to acquire larger amounts of such data by paying GPs to send this to them, so they can provide research services on a commercial basis. This has led to a paradox, whereby Scottish researchers wishing to examine Scottish data may have to pay companies based elsewhere in order to access it. This can be prohibitively expensive, with the result that many important studies have been held back. SPIRE should help to correct this situation by making it mandatory for all Scottish practices to make their coded data available for research and providing a platform for enabling this data to be securely shared.”
While the SPIRE system mainly supports research uses of GP data, it also has features that will benefit GPs, health boards and patients. We asked Dr Pagliari to say more about these benefits and what it is about Scotland that makes these so important.
She said: “Scotland is still known as the ‘sick man of Europe’ and there are high levels of deprivation and chronic disease in many areas. Like other countries Scotland is also ageing fast, so finding better ways to prevent, treat and manage illnesses in the community is vital.”
“Most research using SPIRE data will be aimed at understanding the health of populations or groups, rather than individuals, so the benefits are more likely to be felt at a societal level. For example, the research may show poorer health outcomes in people who don’t attend screening, while linking the GP data to other types of social, economic and environmental data can also help to show how social inequalities or environmental factors, such as pollution levels, influence health. This could benefit patients by enabling planners and policymakers to make better choices about the design of services. the targeting of health promotion and care services, guidelines for prevention of smoking or obesity, or informing traffic congestion charging policies, for example. These may produce downstream benefits for future patients, as will medical research which uses data to inform new drugs or treatments.”
“The SPIRE computer platform also has more direct benefits for GPs, by providing tools that can make it easier to see how their performance compares with expert guidelines or with what other practices are doing, or identifying patients at risk or whose care could be managed better. It’s reasonable to expect that these insights will also help to improve patient outcomes.”
Many patients are concerned about the privacy of their information and may have read news reports about data breaches. We understand that SPIRE will secure patients’ information by anonymising records at the point of collection by removing personal identifiers, like name and address, and that any data extracted will be stored on a temporary basis and only accessible to approved researchers.
We asked Dr Pagliari about this and some of the other ways in which patients’ confidentiality can be assured.
She noted: “Ensuring the secure and confidential management of information is vital for maintaining public trust in systems like SPIRE. When GP information from SPIRE is requested, permission first has to be obtained from a steering group to make sure the reasons are appropriate and the risks of disclosure are low. Only the anonymised, coded data needed to answer the research question can be extracted. Data processing must also take place in a so-called Safe Haven and by people who have completed appropriate training in data protection and are strictly accountable. “
“If the correct information governance processes are followed, even an expert researcher looking at a dataset taken from their GP practice shouldn’t be able to identify themselves”
Dr. Pagliari cautioned that no information is entirely “hack-proof” and it is important to be up-front about this when discussing SPIRE with the public. However SPIRE’s approach distinguishes it from previous systems, such as the now-discontinued Care.data scheme in England.
“One way in which these programmes differ is that, while Care.data sought to extract patient records from GP practices automatically and store them in a massive database, SPIRE will only be used to extract the specific information needed for the research and once the analysis is complete the temporary copy of the information will be destroyed.”
“The second way that the programmes differ is in the amount of control the patient will have. People may opt out from SPIRE at any time.”
“In other words, no super-database of primary care records is planned for Scotland.”
England’s Care.data scheme was beset by a truncated advertising campaign and limited safeguards for patients’ information, and was discontinued in July last year amid controversy.
Dr. Pagliari said: “It is probably fair to point out that the Care.data scandal broke just before the original version of SPIRE was set to be launched. While this held back the initiative, it could be considered a blessing in disguise, as it led to further soul-searching, wider consultation with GPs, patients and consumers, and improvements to the technology and the governance arrangements, which mean that the programme that is about to go live is arguably more robust than it would have been otherwise.”
The launch of SPIRE is also being accompanied by a series of road shows aimed at raising awareness about the programme and its benefits and safeguards.
These systems, if they successfully resist the test of real-world application, could ensure a faster, open and more secure NHS at the customer level and behind the scenes. According to Dr Pagliari:
“Making better use of information has potential to help shine a light on current practices, health trends and inequalities, avoid waste, error and harm, optimise care and support world-class research in Scotland.”
Dr Pagliari offers a caveat though:
“While SPIRE offers advantages over what we have just now, its usefulness is constrained by the fact that much of the information held in GP systems is still in the form of written notes, and can’t be easily extracted in a way that is useful for research, whilst even where data are coded this is often poorly done. As software and training evolve to make it easier for GPs to code their data, the quality and usefulness of this information should improve. In future, Innovations like Artificial Intelligence could even make it possible to infer codes from text, although we are still a long way from achieving this.”
The University of Edinburgh now offers an MSc in Global eHealth – more information here