Information for Members of the Public
Medical research is essential for improving healthcare and tackling the biggest health problems that we face today. Whether you are healthy or have a medical condition, medical research benefits everyone by improving doctors’ and scientists’ understanding of how well different treatments and drugs work.
There are many ways in which medical research is conducted. Clinical trials, which are used to test drugs in a controlled setting, are one example that many people may be familiar with, but there is much more to medical research than clinical trials. Medical research is increasingly being carried out using health data as a complement to traditional clinical trials to understand what is happening to patients when they are treated in real life settings. Health information collected on patients, when they are prescribed a drug or visit their doctor, can be used to conduct medical research into the effectiveness of a particular treatment or to detect harmful side effects of a drug.
Hospital Treatment Insights Service (HTI)
IQVIA is currently working with a number of hospital trusts in England to collect information on illness and drug prescribing in hospitals. This data is used to describe how drugs are being used and to conduct studies to monitor the use, effectiveness and safety of drugs when treating diseases.
What information does IQVIA collect for HTI?
IQVIA does not hold any personally identifiable information on patients. All information collected from participating hospital trusts is first sent directly to NHS Digital, which is an executive non-departmental public body. Although this information includes a patient’s Name, Address, Post Code, NHS Number and Date of Birth, only the hospital Trust and NHS Digital hold these details. NHS Digital links the data to its Hospital Episode Statistics database, then removes all personal details before the data is sent to IQVIA.
IQVIA only has access to the information in non-identified form.
Who uses this HTI data?
The data is being used for medical research studies performed by academic researchers, pharmaceutical companies or medicines regulators among others. All studies have prior approval from an external scientific review committee before they are conducted and researchers must sign an agreement on using the data securely and how it can and cannot be used. This data is not used for conducting analysis for insurance companies, sales and marketing purposes or for understanding sales force performance - it is purely a medical research database.
IQVIA takes security of this data very seriously. The data is encrypted, stored securely and managed by ISO27001-certified processes. The security measures in place include access authentication, monitoring of access, round the clock security presence, robust firewalls, and other access restrictions. All of the work we do is subject to annual review and is auditable by the NHS.
HTI Legal Approval
In addition to ethics approval and NHS Digital approval, we have Section 251 of the NHS Act 2006 approval to permit the flow of confidential data from this Trust to NHS Digital for this purpose. This approval can be viewed online: see CAG advice and approval decisions with the reference PIAG 4-05(e)/2007.
Patients have the right to opt out from having their data used in this way (or in any other services) by opting out of data sharing at their GP practice. If you would like more information on opt-outs, please visit http://content.digital.nhs.uk/yourinfo.