General Practice (GP) records let doctors provide patients with the care they need, but are also the closest thing that we have to a comprehensive lifelong record of a patient’s health and the treatment they receive. As such, GP records are an extremely valuable source of information providing the potential for NHSScotland to learn more about the health needs of the population and how best to address those needs.
SPIRE will be introduced in phases across Scotland from January 2017, and a Public Information Campaign will run in March 2017.
The following link will take you to the main website for SPIRE. http://www.spire.scot.nhs.uk/
Here are a couple of the most important FAQs from the main site.
What does SPIRE stand for? SPIRE is the Scottish Primary Care Information Resource, a service which has been developed to help GPs, the NHS in Scotland and researchers to learn from information held at GP practices and so improve the care, health and well being of the Scottish population.
What is SPIRE? The aim of SPIRE is to provide a single national system to extract data from General Practice clinical IT systems in Scotland. SPIRE will analyse and report on the data extracted for specific and approved purposes whilst ensuring the highest standards of patient confidentiality and privacy are maintained.
What will the data extracted by SPIRE be used for? Data extracted through SPIRE will be analysed to better understand and monitor the health of the Scottish population and to plan and manage health and social care services accordingly. The new service will also be available to those carrying out research into health and social care, including research on potential new treatments for particular illnesses. Some data analysis will generate national statistics aimed at informing the public on treatment and care provision. It also planned to use SPIRE to support any new contractual arrangements with GPs through the provision of data and business intelligence.
Does MSDi have experience working with sensitive information in public sector contracts? Yes. MSDi has been serving NHSScotland Health Boards since 1998 when they became the first informatics provider to extract data from the General Practice Administration System for Scotland (GPASS). In addition, MSDi currently provides the extraction mechanism which calculated Quality and Outcomes Framework (QOF) payments for GP practices across Scotland. MSDi also provide the data extraction system used by NHS Greater Glasgow & Clyde which has been operating since 2004. MSDi already supplies software to the NHS in England and in Wales and have a excellent track record with no major privacy breaches.MSDi is a private company.
How can I be confident that patients’ personal information is secure? MSDi will not access personal information belonging to patients except on very rare occasions when they may be required to access personal information as part of their contract to supply and maintain some of the software required by SPIRE. When this is the case they are bound by strict contractual rules in relation to safe and secure handling of information, as set out in the circular . This guidance ensures that all access to, and handling of, person-identifiable information by contractors is properly regulated under a set of clearly understood principles. An example of when MSDi may be required to access personal information as part of their contract to maintain SPIRE is if a practice notice an anomaly in the patient list provided by SPIRE and the support call is triaged to MSDi then MSDi would in this example, with the practice’s consent, access the relevant SPIRE screens to investigate. Some of the SPIRE screens could contain patient information pertaining to the support call.
All access is at the practice (remote or in person) and no data, or screenshots, containing patient identifiable information would be removed from the practice. The number of staff at MSDi with potential to access the practice would not exceed 28 individuals in total and would not be more than 2 individuals at any given time. MSDi implemented an Information Governance framework that meets the requirements of the NHS IG Toolkit. All staff with access to customer systems receive information governance training and ensure that the equipment, network and remote connections is secure.
Is SPIRE a national database? SPIRE is not a national database. It helps GP practices use their data, and also helps with specific, approved requests of information from practices, for example for research. SPIRE will not routinely collect patient information or extract information unless it is needed for a specific, approved purpose. SPIRE will not store information for longer than necessary, and any information is safely destroyed after use. SPIRE will not produce one big database of patients from all over Scotland.
What types of data will be able to be extracted from general practices through SPIRE? Only information that can be used within approved data analysis will be extracted through SPIRE. This could include data on family history, vaccinations received, diagnoses, referrals, biological values (such as blood pressure, BMI and cholesterol level) and prescribed medication. When the data being extracted are person-identifiable, SPIRE includes a number of measures to ensure data are transported and held securely and that access is controlled and monitored. See ‘What safeguards are in place to ensure patient information is kept safe and secure?’.
What are the specific details on identifiable patient information that will be included in Spire? The type of information extracted depends on the question each extract is designed to answer. The full medical record will never be extracted; the only information that is extracted will be what is strictly required for the request. Only coded data will be extracted, but no notes in text, for instance of discussions between a patient and their doctor or nurse. All requests will be scrutinised by the independent SPIRE Steering Group.
For most requests, no person-identifiable details will need to be extracted, for example, the number of patients in Scotland with a certain illness.For other requests, a limited amount of patient personally identifiable information is required, for example the number of patients in Scotland with a certain illness by age group (extraction of date of birth to derive the age) or by a certain Scottish index multiple of deprivation area (extraction of postcode to derive the deprivation area).
In these cases, the information will first be split into two parts, the medical information (diagnosis, prescription etc) and the person-identifiable information, which is encrypted (date of birth, post code for example). The two parts of the information will be encrypted again in separate transfers to NHS NSS for processing.
The encrypted personal information will be translated into a non-identifiable dataset such as an age group by one group of analysts, who have no access to the medical information, and the personally identifiable information deleted. This group then supplies the age group back to the group with access to the medical information, so that no one analyst has access to both medical information and personally identifiable information.
SPIRE will not give a researcher direct access to personally identifiable patient data (for example, for research on individual patients, or identifying patients by name to contact for interviews). This kind of research currently requires explicit consent from each patient before a researcher can contact them, and will continue to do so.
How will SPIRE protect the confidentiality of patient data? To provide assurances that any data extracted will be safely and securely handled, and that the confidentiality of information in patient records is safeguarded, an Information Governance Framework has been developed. This describes principles and arrangements that will underpin SPIRE and to which the service will adhere to ensure patient confidentiality is always maintained.
Can practices opt out of SPIRE? Yes. GP practices will be able to opt in or out of data extraction either completely or on a case-by-case basis. No single extraction will take place without the consent of the practice. In some cases practices will be asked to consent once to data extracts which are required to be repeated regularly, although they will still be able to opt out of these extracts later if they change their mind. Practices may also choose to consent to all extractions that do not involve person-identifiable data. This will avoid the requirement to consent to each extract of this nature.
The SPIRE application which will be available to practices provides an easy-to-use mechanism to inform practices about the nature and purpose of each extract and to allow them to opt in or out of extracts. Where no response is received from a practice about a particular extract request, SPIRE will assume the practice has opted out and no data will be extracted.
Can patients opt out of their data being extracted? Yes, patients will be able to opt out of any data extraction being performed through SPIRE that may include information that could be used to identify them. Patients should contact practices to opt-out and they can complete an opt-out form which will be provided for practices. The practice will then insert a code into their record to prevent data being extracted. Patients who opt out may change their mind and opt in at a later date. Again, the patient should contact their practice in this instance.
Note that patient opt-out will not prevent a patient’s data being included in a data extract where there is no risk of identification when the data are analysed. An example would be a data extract including aggregated data about the total number of patients in the practice with a disease that is highly prevalent such as diabetes (as opposed to rare disease that may apply to only one or two individuals in the practice). In this example, if the patient had the disease of interest they would be included in the count of the number of patients but no other personal information would be included. SPIRE Opt-Out form.
How does SPIRE relate to consented projects such as SHARE and UK Biobank? If a patient opts out from SPIRE, will their consent to take part in SHARE / Biobank be affected?SPIRE is separate from SHARE and from UK Biobank. If a patient opts out from SPIRE, it will not affect their consent to take part in SHARE or UK Biobank.