SystmOne user FAQs

SystmOne users outside of the prison setting can opt-in to supporting the ResearchOne project. De-identified, pseudonymised data is automatically and electronically extracted from contributing SystmOne organisations into the ResearchOne database. The data is only used in projects that have the relevant ethical and scientific approval.

This research data, drawn from multiple care organisation types, can be transformed into knowledge to improve care provision and efficiency across the NHS. The innovations is helps to create will benefit the users of all clinical systems, helping to drive evidence-based research into clinical practice.

FAQs

Why has my care team been invited to participate?
How can my organisation take part?
What happens when a health and care provider takes part in ResearchOne?
Who can access the de-identified ResearchOne database, and how?
What types of projects can use data from the de-identified ResearchOne database?
Can a health and care provider withdraw from ResearchOne?
What are the benefits of taking part?
What information is available for patients?
Can patients opt out?
What is the ResearchOne Database Committee?
What is the ResearchOne Project Committee?
Is ResearchOne a not-for-profit organisation?


Why has my care team been invited to participate?

All SystmOne health and social care organisations in England (outside of prison settings) are invited to contribute their anonymous data to ResearchOne. Data recorded in prisons is subject to additional ethical and governance considerations and is omitted from this research database.

It is the decision of each unit whether the anonymised data they enter into TPP SystmOne can be included in the ResearchOne database; data is only included where explicit consent from each unit can be checked and verified. All organisations are provided with information to give their patients regarding ResearchOne.  Information leaflets and posters are available in the documentation section and in F1 Help on SystmOne.

SystmOne records integrate data from multiple organisations into one record per patient.  Each organisation controls the information that they have entered.  Therefore, as more organisations join ResearchOne, more comprehensive records will be available for research.  This may inform more meaningful research, which is why we are inviting as many organisations as possible.


How can my organisation take part?

All English non-prison organisations using SystmOne are invited to contribute data for research analysis.  The data controller for the organisation must opt in before any de-identified data will be included in the ResearchOne database.  This can be done through the organisation preference screen in SystmOne.

You can exclude a patient record from ResearchOne by recording a ‘patient dissent from research flag’.


What happens when a health and care provider takes part in ResearchOne?

If your organisation consents to anonymised data extracts into ResearchOne, then the data will be transferred into the ResearchOne database on a weekly basis. Many organisations may contribute to a patient record, but information will only be included where it has been entered by organisations that have opted in to ResearchOne.

ResearchOne is held in the TPP data centres and transfer is completely secure, encrypted and electronic. The data transferred consists of non-identifiable clinical data items, a full list of which is given in the database system summary. Some important other indicators are also drawn from the data including rurality and deprivation ranks, sector level postcodes and month/year of birth. All these indicators are taken at a level which eliminates any real, reasonable possibility of identification.

As part of the data extraction each research record will be securely allocated a unique research identifier. This enables important longitudinal research studies to take place. A secure, encrypted link table between a SystmOne record identifier and the research record identifier is stored as part of this process. This allows the potential for future important data linkage, for example to the NHS Information Centre Hospital Episode Statistics. This linkage work can only take place after official ethical and governance authorisation has been given. This link table is never made available to research staff.

Researchers in the UK may request information.  This will be reviewed by the independent Project Committee to ensure that the research may benefit patient care.  The researchers will then receive the minimum required data, under a Confidentiality and Acceptable Use Agreement.


Who can access the de-identified ResearchOne database, and how?

Any medical researcher who wishes to access the data for a new research project must first assign a principal investigator to the project. The principal investigator must gain ethical approval from any relevant ethics committees before consideration by the ResearchOne Project Committee. The committee approves the project based on the quality of the research involved and the impact it will have on public health; patient and provider confidentiality are at the forefront of this decision. After approval a minimum data subset for the project is automatically built by the ResearchOne Technical Team. This consists only of non-identifiable, anonymised data. Researchers can access this data set either internally from the ResearchOne environment or request a secure, encrypted external transfer of data.

ResearchOne also has a dedicated staff team who manage database maintenance, storage, update and extraction. All staff members have a current Criminal Records Bureau check, have signed a duty of confidentiality agreement, a confidentiality agreement, have had their employment approved by the ResearchOne Database Committee and are legally and ethically bound by strict information systems security and governance policies.

Further details on the security, confidentiality and audit procedures governing data use and transfer by both approved researchers and staff can be found in the database system summary.


What types of projects can use data from the de-identified ResearchOne database?

Projects can only have access where they confer to the ResearchOne research programme approved by the NHS Research Ethics Committee. Projects must also maintain patient anonymity and data security.

A database containing the electronic health records of a large number of patients offers an incredible opportunity for high-impact, high-quality medical research. The research programme is designed to fully utilise this opportunity with the aim of providing maximal support to the NHS and healthcare professionals in their delivery of personalised and effective healthcare.

Research will be shaped by the organisations that join ResearchOne.  As many organisations may contribute to a patient record, the research record will be more comprehensive as more organisations join ResearchOne.  For example, Child Health  well represented in research if many Child Health organisations joined.

The programme of research is on the projects page.


Can a health and care provider withdraw from ResearchOne?

Health and care units can withdraw from contributing de-identified data to the ResearchOne database at any time. The relevant member of each unit, such as the practice manager, will be able to opt in or out through the SystmOne preferences screen. This preference can be changed at any point and the research database will be updated accordingly within seven days.


What are the benefits of taking part?

Healthcare units using SystmOne are contributing to one of the largest electronic patient record databases in the world. By allowing non-identifiable data to be made available for research they are helping to create a high quality research database which provides benefits to healthcare across the NHS. The data is used to help develop and improve risk prediction and decision support tools, to drive important surveillance work, to discover new efficient ways of working, to help improve data quality across the healthcare estate and to validate existing research done on large primary care data sets (for example, QResearch and CPRD). Participating users will drive much of the developments and research undertaken by the ResearchOne team to ensure that ResearchOne is used to address the needs of healthcare providers.

Appropriate results from the research, for example new risk prediction scores or decision support tools, will be built into SystmOne to enable contributing units to benefit directly from this work. Results and tools developed by the ResearchOne team will also be published under open-source licences and in peer-reviewed journals. Details of all current and past research projects and results are always available on the ResearchOne website.

Health and care units that participate may wish to conduct research. Data requests can be submitted to ResearchOne, and we can work with you and help to find other researchers to collaborate with.  You may develop a tool or protocol that can go into SystmOne, and openly publish results.

The more organisations that join, from as many organisation types as possible, the more comprehensive and meaningful the research outcomes may be.  This means that joining really does mean that research may become more useful to you.


What information is available for patients?

Information posters and leaflets for patients are available on SystmOne where hard copies can be requested. The posters are used to inform patients that anonymised data from your unit is used for research purposes; if possible, they should be displayed in key areas that patients can access.

The patient leaflets contain more detailed information about ResearchOne, including instructions on the patient opt-out procedure, how to discover what research projects are taking place, how the research can benefit the public and details about the management and running of ResearchOne.


Can patients opt out?

Patients at contributing units can choose to opt out of ResearchOne by informing their healthcare provider who should then record this dissent on their electronic record. Pseudonymised data from this patient record will be removed from ResearchOne as part of the next scheduled update. More details about this procedure are available on SystmOne or here.


What is the ResearchOne Database Committee?

The ResearchOne Database Committee represents users, the academic community, the public, the ethics committees, and their respective interests in the database. They oversee all database management and operation.

Membership of the group reflects the need to represent the key stakeholders in this project and the need to engage the NHS, different healthcare providers, users, the public, and the academic community. Membership therefore therefore have experience of the following:

  • SystmOne National User Group (SNUG)
  • Academic institutions
  • TPP SystmOne users
  • TPP
  • Research Ethics Committees
  • SystmOne patients
  • The British Medical Association
  • Royal College of General Practitioners
  • ResearchOne Project Committee


What is the ResearchOne Project Committee?

The role of the ResearchOne Project Committee is to maintain the high quality and value of research to the medical community and to the public. They ensure patient and provider confidentiality at all times. Membership includes representatives with a strong background in healthcare, informatics and medical research and includes internationally recognised academic researchers.


Is ResearchOne a not-for-profit organisation?

ResearchOne is a not-for-profit enterprise developed by TPP in partnership with the University of Leeds. ResearchOne was created as a result of a Knowledge Transfer Partnership funded by the UK Government’s Technology Strategy Board . The ResearchOne project has been approved by the NHS Research Ethics Committee. The project is entirely non-commercial with the mission of enhancing access and engagement in research and public health.  Research data access is defined only by its potential value to health and social care.