FAQ
Q: How is the collected data going to be accessed via the e-Lab?
A: Each local NHS partner can have a local integrated healthcare system which is used. For e-Lab use, this data is anonymised and made available to NWeH but still held within the NHS. This enables trusts to retain control of their local e-Lab. To obtain the data, approval must be given from the NWeH Governance and Ethics Board.
Q. How can I access other healthcare data through e-Lab?
A: Consortium members will only ever have access to their local e-Lab. Requests for access to the e-Lab federation (containing all data sources) must be submitted to the independent e-Lab Governance and Ethics Board for review. Once approval has been given access to the anonymised data will be granted for the purpose requested only. Safeguards are put in place to ensure that no two requests for data can be joined together to identify a patient.
Q: Will the local NHS data custodians and other users receive appropriate training in using e-Lab?
A: Yes.
Q: How will NWeH aim to improve patient care at the primary level?
A: Access to organised, cleaned and verified data will allow GPs to provide a more efficient and effective primary healthcare. In addition, improving the ability of GPs to meet practice targets.
Q: How will the NWeH project aid GPs in targeting patients for clinical trials?
A: The e-Lab model can be used to highlight patients that best match the criteria for a certain clinical trial. This information will then be given to GPs who can identify the patients and contact them if they wish to.
Q: How will data anonymity be achieved?
A: By the system removing all identifiable information prior to data access by the e-Lab.
Q: Can primary care trusts withdraw from the project and remove their data from the e-Lab at any point in the project?
A: Yes, the local PCT has full control of their data.
Q. Can the patient opt out of their data being used in this way?
A: Yes. All patients have the right to opt out by contacting their GP.
Q: How does the NWeH e-Lab model fit in with already operating electronic NHS health care record systems – such NHS Spine?
A: The e-Lab model aims to provide a “sense-making” layer on top of health and service data generated through the provision of care. It can work in conjunction with NHS EHRs.
Q. What other healthcare data will be contained in the e-Lab?
A: NWeH aims to add data from sources such as the disease and cancer registry, the national office of statistics, tissue banks etc.
Q: How is the collected data going to be accessed via the e-Lab?
A: The access to e-Lab data is controlled and monitored by NWeH. The access control ensures that a users query is (pre-) authorised and that the user can only access the research data for which they have the necessary privileges.
Q: How is the project going to ensure that data use abides by clinical guidelines?
A: NWeH project Governance and Ethics Board has a function of ensuring that data use abides by all relevant guidelines. Each user will therefore have to submit the proposal stating the specific use of data. Based upon the proposal the e-Lab users will be given user rights and privileges that will ensure all clinical guidelines are respected.
Q: How will NWeH aim to improve patient care at the secondary care level?
A: By enabling access to relevant collected healthcare data and use these for example, to gauge the effectiveness of treatments, predict healthcare issues and achieve a joint approach to treatment.