Your questions answered

Find answers to your questions about SPIRE, how it will benefit you and what happens to your information.

What is SPIRE?
SPIRE is the Scottish Primary Care Information Resource. It is a service that will allow small amounts of information from GP practice records to be used to help doctors’ surgeries, NHSScotland and the Scottish Government to improve care and plan services. SPIRE can also help with research into new treatments for particular conditions or diseases, to monitor outbreaks (of flu for example) and to develop new medicines. It allows this information from GP patient records to be securely transferred and safely processed by NHS National Services Scotland (NSS) – the NHSScotland organisation responsible for Scotland’s health statistics. You will not be able to be identified from this information as the data are encrypted before leaving the GP practice.
Will SPIRE keep my data?
SPIRE is not a national database. It helps your GP practice 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 is changing about how my health information is used?
At present, NSS uses information from different places to plan services for people across Scotland, such as how often operations happen or the number of appointments and emergency admissions for certain illnesses. This information helps health and care staff, NHS Health Boards, hospitals and NHSScotland as a whole, to manage and plan services for patients now and in the future. SPIRE is being introduced to simplify and streamline the information from GP practices and to ensure that it is transferred in a safe and secure way. SPIRE aims to improve care in Scotland by increasing transparency of information and by ensuring that the process by which information is used is secure and consistent.
In terms of your care, nothing will change because of SPIRE; you will continue to receive the same care as before at your GP practice. NHSScotland uses information from your doctor’s surgery records to help look after you. This information is shared currently with hospitals and community teams when you require care. This will not change with SPIRE.
Also information is used by your doctor’s surgery to manage your care, such as inviting you for your flu vaccination or for a blood pressure check, by Health Boards to plan for future services and by researchers to develop new treatments. SPIRE is being introduced to ensure that this is done in the same way across Scotland and is open and transparent for health and care staff and patients.
Who are National Services Scotland (NSS) and what do they do?
National Services Scotland is part of the NHS and support them by gathering and analysing information that helps NHSScotland to make the right decisions for patients.
Do I need to agree for my information to be used in SPIRE?
No, you do not need to do anything if you are happy for your information to be used in SPIRE. However, if you do not want your information to be used, you can opt out. This will not affect your patient rights or the care you receive from your practice.
When do I need to make a decision?
NHSScotland will begin making information from GP patient records available through SPIRE from May 2017. SPIRE will be introduced in phases across Scotland from Jan 2017.
You can opt out at any time. If you do, NHS National Services Scotland, the NHSScotland organisation responsible for information and health intelligence, including health statistics, will no longer receive personal information from your GP patient records.
You can change your mind at any time. Your choice will not affect the care you receive from your GP or nurse.
I live in England but my GP practice is in Scotland. Can my information be used in SPIRE?
If you are registered with a Scottish GP practice, your information will be used in the same way as patients living in Scotland. This means that SPIRE can use your information unless you choose to opt-out.
I live in Scotland, but my GP practice is in England. Can my information be used in SPIRE?
SPIRE is only installed in GP practices in Scotland, if you are attending an English GP practice, your information will not be used in SPIRE.
Is SPIRE part of care.data?
No. care.data was a separate service proposed for England. SPIRE will operate only in Scotland and has been developed in conjunction with patient representatives, the Royal College of General Practitioners and the British Medical Association.
Is SPIRE the same as the private Spire Healthcare?
No. SPIRE is a service provided for GP practices in Scotland and is a joint initiative between NHS National Services Scotland (the NHSScotland organisation responsible for Scotland’s health information and statistics) and the Scottish Government.
SPIRE is not associated with Spire Healthcare or any private sector healthcare provider.
What are the benefits of sharing my information?
GP Practices, NHS organisations and approved researchers will be able to use SPIRE in ways that could help you, your family and everyone in Scotland, by:
  • Improving the quality of care for all patients
  • Planning the long-term management for those with chronic conditions such as diabetes, asthma, or heart problems
  • Planning services and care for people who have a health need
  • Developing knowledge about how many people are vaccinated or take particular medicines
  • Providing better health and care to vulnerable or disadvantaged groups
  • Responding to major public health issues like flu epidemics
  • Supporting research into new treatments for particular illnesses
How will it help my GP practice?
Your GP practice will be able to use SPIRE to help improve the quality of care it provides and to understand how many patients they need to contact for follow-up consultations, such as blood pressure measurements, or vaccinations. Also, SPIRE will help to review the workload plan at your practice. Your practice can also use SPIRE to take part in research studies. All of this means that the staff at your GP practice will have more time to spend on your care.
Can you give me an example of how SPIRE could help with my care?
SPIRE can be used to make sure that patients who take certain medicines receive the necessary monitoring.
For example, Metformin is prescribed for some forms of diabetes. Some side effects of Metformin can happen when a patient has reduced kidney function. Therefore, patients using Metformin and who have reduced kidney function should be examined regularly to make sure that it is safe for them to continue Metformin treatment.
With SPIRE, your GP practice will be able to quickly see a list of patients who should have these review appointments.
What do GPs and Patient Representatives think about SPIRE?
SPIRE is supported by both the British Medical Association in Scotland (BMA) and the Royal College of General Practitioners Scotland (RCGP Scotland).
SPIRE is also supported by the patient representative group of the Royal College of General Practitioners Scotland (RCGP P3) and other patient groups.
We actively sought out views from a wide variety of stakeholders including privacy activists, hard-to-reach patients, professional bodies and researchers.
See what GPs and patient representatives say about SPIRE
Who is going to use the information gathered through SPIRE?
The information will be used mainly by your own practice to look at the services that they provide to help improve the care to patients. In addition, information will be used by trained and authorised analysts at NHS National Services Scotland, the NHS Scotland organisation responsible for information and health intelligence, to produce health information and statistics. The information might be used in a number of ways, for example:
  • Your GP practice will be able to look at information about the practice, such as which patients to write to for flu vaccinations – these reports which are created specifically for your GP practice will not leave the practice.
  • Your GP practice will work with other practices in your area to try and improve the quality of patient care locally.
  • To understand what is happening in a local area NHS Health Boards will be able to request information, such as referrals to hospitals.
  • To work out the total number of people in Scotland with a particular illness.
  • To carry out either research into new treatments or to understand why certain people are at risk of different diseases.
Organisations (researchers, charities, NHS Health Boards) will have to apply to an independent SPIRE Steering Group if they want to use the information. Permission will be considered only where there is a clear health benefit and where patient confidentiality can be maintained at all times. The independent SPIRE Steering Group includes members of the public who represent patients’ interests.
Like many Government statistics, the national and Health Board summaries will be publicly available.
Published information will never identify individual people or have personal details on it.
Why would a researcher want to use my information?
Researchers often approach the NHS or a GP practice to ask for patient information if they want to find out how many people might have a particular health condition or are taking certain medicines. For example, a charity may want to know how many people in Scotland suffer from asthma, and at what age they were first diagnosed.
All requests for information will be scrutinised by an independent SPIRE Steering Group and only if it is approved will a research request go ahead.
Can you give me an example of how SPIRE might be used by a researcher?
Research suggests that having long-term conditions influences a patient’s outcome when they are diagnosed with cancer. This could be to do with:
  • Not taking part in cancer screening
  • Not recognising possible signs and symptoms of cancer due to their long-term conditions and their treatments
  • Being unsuitable for whatever reason for certain treatment options
  • Differences in individuals’ response to treatments
SPIRE could help researchers to better understand these differences, and how having long-term conditions affects a patient’s cancer outcomes. With SPIRE, it will be easier to identify the information which is necessary for this kind of research.
Will SPIRE take my whole record?
No, SPIRE will only take small amounts of information from your record, such as measurements like blood pressure or your weight, medications and medical history. No notes will be used of any discussions you have had with your doctor or nurse. SPIRE will ensure that only the information needed for the purpose of the specific analysis is taken. You will not be able to be identified from this information.
Will the information that is being taken from my record be shared with other parts of the NHS?
SPIRE will enable practices to manage information from electronic records to improve services and research. It is NOT about sharing care information directly between doctors, nurses, and hospitals.
Who has access to my information in the surgery at the moment?
Authorised and trained staff based within the GP practice have access to your patient record. Occasionally practices take part in research and other studies which may use some of your information. Very occasionally in an emergency like a flu outbreak, information will be shared outside the practice. The law covers this process.
I would like my information to be used for the NHS, but not for research. Can I opt out of just research?
No, you cannot opt out of specific project uses of SPIRE.
I have signed up to SHARE and BIOBANK to enable my information to be used for research, will I still need to give my consent for research use of SPIRE?
At the moment, there are separate processes for SHARE, Biobank and SPIRE but we hope to be able to coordinate them at some point in the future.
Was SPIRE affected by the international cyber attack on 15 May 2017?
All SPIRE systems had been updated prior to the cyber attack on 15 May 2017, and were unaffected.
What is the SPIRE Steering Group and what role does it play?
The SPIRE Steering Group is an independent advisory group that has been established to ensure that any requests to use SPIRE information are rigorously reviewed before going ahead. They will consider requests only where there is a clear health benefit and where patient confidentiality can be maintained at all times. The group includes patient representatives, GPs and Caldicott Guardians. Caldicott Guardians are senior people trained in protecting the confidentiality of information of patients and people who use NHS services.
Will any researcher be able to contact me directly because of SPIRE?
No, researchers will not have access to your medical records.
In some cases, the independent SPIRE Steering Group may approve a research request for information where patients can be identified. They would only do this if they feel that there is a clear health benefit from the research and that your confidentiality can be maintained at all times.
For example, a university researcher may want to interview patients with a rare disease or unusual response to medication. In these cases, your GP practice will contact you directly to ask you whether you want to participate in the study. It will be your choice whether or not to take part, and your choice will not influence the care you receive at your GP practice. This happens already for certain research projects, so that is nothing new; SPIRE is making it more efficient, consistent and safe across Scotland.
What do you mean by an approved researcher?
An approved researcher is a person from a university or similar organisation who has submitted a request to a specialist team in NSS who deal with research requests for NHSScotland. Their request will be assessed by this specialist team, and then it will be passed to the independent SPIRE Steering Group, to ensure that there is a public health benefit, and that the researcher and their team will maintain your confidentiality at all times.
What will happen to my information after these reports/research studies are finished?
NSS will hold your information in a safe storage area for the duration of the research or analysis. Access to the information is tightly controlled. Only a small group (usually one or two) authorised analysts, who have received training to ensure that your information is kept secure and confidential, will be able to use it. Once your information has been used for a report or publication, it will be destroyed.
Will my information ever be sold?
No. Your information will never be sold.
Will solicitors and/or insurance, drug or marketing companies, or social services be able to get at my records?
No. Information from your GP records will never be made available to solicitors, insurance, marketing or any other third parties without your permission in writing.
However they will have access to summary information and statistics that are published and publically available to everyone.
How will my information be kept safe?
There are strict rules governing how information is managed. All involved staff have a legal duty to keep information safe and secure. NSS will hold your information in a safe storage area for the duration of the research or analysis. Access to the information is tightly controlled and only one or two trained and authorised analysts will be able to use it. Once your information has been used for a report or publication as described above, it will be destroyed. You will not be able to be identified from this information.
You say that SPIRE will be secure – was my information not secure before?
The NHS takes great care to ensure that information is secure, but there have been different methods of doing this across different parts of the organisation. SPIRE will ensure that secure processes are applied consistently, and patients will receive information to make sure they understand how their information is being stored.
What is encryption and what does it mean for my information?
Encryption means that information is translated or ‘scrambled’ into a secret code. To be able to read the information, the key to this code is needed.
Encryption is very common, and most of us use it, for example, when shopping online, to keep your credit card details and personal details safe and only visible to you and the online shop.
For SPIRE, encryption means that your information is translated into this secret code at your GP practice, before it is sent to NHS National Services Scotland.
How does SPIRE comply with the proposed GDPR (General Data Protection Regulation 2016/679) passed by the European Parliament in April 2016 (and due to be commenced on 25 May 2018)?
It is one of the main duties of the SPIRE Steering Group to ensure that SPIRE complies with all current and near future legislation and the group includes the Caldicott Guardian of NSS and other Caldicott Guardians from NHS Scotland. In addition the SPIRE Steering Group has consulted with, and received input from, the Information Commissioners Office . The SPIRE Steering Group is aware of the current consultation on the General Data Protection Regulation 2016/679 (GDPR), which will become operational in May 2018, and have received specific advice from the ICO on how it will affect SPIRE.
Like the requirements of the current Data Protection Act, the GDPR requires specific conditions for processing to be met. Legal processing of data through SPIRE relies on articles Article 9(2)(g), Article 9(2)(h) and Article 9(2)(i) of the GDPR (see Appendix 3 of the Privacy Impact Assessment for more detail). The GDPR's duty of confidentiality, equivalent to that which would arise if that person were a health professional, also applies to all users of identifiable SPIRE data, who must meet the training and other professional standards. The purpose of the public information campaign with the opportunity to ‘opt-out’ is to comply with the principle that processing should be fair and transparent, and to fulfil individuals’ rights
Do I have a choice about what happens with my information?
Yes, you have a choice. If you’re happy for NHSScotland to use information from your GP patient record to improve the quality of care or plan health and care services or for research, then you don’t need to do anything. It will happen automatically.
If you do not want information from your GP patient records to be used in this way, you need to notify your GP practice. You might need to complete a very short form, which will only take a couple of minutes of your time. The opt-out form is available here or pick one up at your GP practice.
If you have any other questions about SPIRE or want to know more about how confidential information is managed, just call free on 0800 22 44 88, or go to the contact form on the website.
Please note that SPIRE relates to individual patient records (see Will SPIRE take my whole record?). However, whatever you decide, your information will still be included in what is known as “aggregated data” i.e. combined with lots of other patients’ information – for example, the number of patients registered in your practice of a certain age group or with a certain illness. However, it will be impossible to identify you from this data.
Do I need to do anything if I’m happy for my health information to be used?
No. If you’re happy for NHSScotland to use information from your GP patient records improving the quality of care, for planning health and care services and for research then you don’t need to do anything. It will happen automatically.
How do I opt-out?
You will need to let your practice know that you “want to opt out of SPIRE. You might need to complete a short form which tells you a little about SPIRE and asks you to fill in your details and to then sign the form. The form then needs to be handed in or sent to your GP practice.
Why do I need to complete a form to opt-out?
GP Practices may need something from you in writing so that they can keep a record that you didn’t want to take part. It is a short form and should only take a few minutes to read and complete. If you move to a new practice you will need to remind them that you have opted out of SPIRE and you may need to complete another form.
Can I change my mind?
Yes, you can change your mind and opt back in or opt out at any time.
What happens if I opt-out?
Nothing. Your information will remain in the GP practice and this will not affect the care you receive. Your practice will add a code to your files to say that you have opted out.
Can my GP practice opt out of SPIRE?
Yes this is possible. Your GP practice is responsible for all of their patients information and may feel that it is in the best interest of the practice and their patients for them not to take part.
If my GP practice doesn’t take part in SPIRE, can I still?
You won’t be able to take part unless your GP practice opts-in. If you feel strongly that you would like your information to be used, you could approach your GP practice, contact your local patient participation group (if your GP practice has one), or contact the Scottish Health Council. The aim of the this organisation is to listen to your views on how to improve the NHS and to involve you in planning and developing health services.
If I opt-out, will it affect the care I get from my GP?
Absolutely not, your decision to opt out of SPIRE will not affect the level of care that you receive.
I’m a parent or guardian, can I make a decision on behalf of my child?
If your child is able to understand and make an informed choice, the decision must be theirs. If a parent is completing the opt-out form on behalf of a child, they will need to fill in the child’s details and then sign it on their behalf. Every individual, if able, will need to complete a form themselves.
I am a carer for someone who lacks capacity to make decisions for themselves, can I decide on their behalf?
If you have a Lasting Power of Attorney for the health and welfare of another person, you can decide whether the patient is opted in or out of SPIRE.
Then you will need to complete an opt-out form on their behalf.