Research using non-identified patient data is driving healthcare forward and improving patient outcomes.

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 medicines work.

There are many ways in which medical research is conducted. Clinical trials, which are used to test new medicines 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 medicine 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 medicine.

Hospital Treatment Insights Service (HTI)
IQVIA is currently working with a number of hospital trusts in England to collect information on illness and medicines prescribed in hospitals. This data is used to describe how medicines are being used and to conduct studies to monitor the use, effectiveness and safety of medicines when treating diseases.

IQVIA™ Medical Research Data 
Non-identified longitudinal data collected from GP practices in the UK are an invaluable medical research resource that enables a patient’s journey to be tracked from the initial consultation and investigation and through referral to diagnosis of a condition and treatment. Chronic conditions, in particular, require a long history of data so that trends and signals can be detected and early risk prediction tools can be designed. Availability of sufficient data and research can drive health policy changes or adoption of new guidelines for healthcare providers, thus leading to improved outcomes for patients.

Cancer Data Network Research Database (CDNRD)
The Cancer Data Network Research Database (CDNRD) is a Trusted Research Environment (TRE) that contains non-identified cancer patient records collected from participating NHS Trusts which have agreed to contribute to the Cancer Data Network (CDN) data collection scheme as part of DATA-CAN, the UK’s Health Data Research Hub for cancer. The CDN Research Data currently includes cancer data collected from NHS Trusts using the CDN Appliance software that de-identifies, and filters identifiable & opted-out patient data within the hospital firewall. CDN complies with GDPR, the five safe’s framework of  Trusted Research Environment (TRE) and the data privacy regulations are described in the CDN data protection notice. CDN Research data does not include any sensitive / identifiable data. Since its activation in June 2022, CDN aims to collate cancer patient data from 20 NHS Trusts within the next year and expand its data footprint across UK. CDNRD will include historical data from 2018.

Hospital Episode Statistics (HES)
Non-identified details of all admissions, A and E attendances and outpatient appointments at NHS hospitals in England.

National Amyloidosis Centre (NAC) - Hospital Episode Statistics (HES) Data
Amyloidosis patients often go undiagnosed for a long period of time, with patients requiring multiple hospital visits before they are finally diagnosed. There are still large gaps of knowledge about amyloidosis. Linking NAC´s data and HES data, non-identified information is used to support researchers in generating a better understanding about amyloidosis and to improve diagnosis and treatment for NHS patients affected by this condition.

Sheffield Teaching Hospitals NHS Foundation Trust (STHFT)
Medical information of patients with Pulmonary Arterial Hypertension (PH) have been added to a database being used for research purposes in PH. The reason of this research was to help NHS and its partners to make informed decisions about the future development of specialist services for PH. Additionally, this helped STHFT to develop new approaches to diagnosing and treating PH, including supporting the development of new drug discovery in partnership with pharmaceutical companies. IQVIA Solutions UK Limited, STHFT and Janssen Pharmaceuticals were the data controllers of the STHFT-HES data, and Janssen were the funders of the study. The study has now been finalized, and the findings are pending to be published.

Sheffield Teaching Hospital NHS Foundation Trust (STHFT)
Medical information of patients with Pulmonary Arterial Hypertension (PAH), Chronic Thromboembolic Pulmonary Hypertension (CTEPH), and Sarcoidosis-Associated Pulmonary Hypertension (SAPH) have been used to carry out a retrospective real world data analysis in Pulmonary Hypertension (PH) using STHFT-HES data. The reason of this research was that due to the complexity, late diagnosis and absence of real world studies across all subtypes of PH, there is currently a lack of understanding regarding the clinical pathway leading to diagnosis. In addition, there is a need to further explore, and study post-diagnosis pathways and patient related outcomes associated with these diseases in routine clinical practice. The study focused on describing and comparing PAH, CTEPH, and SAPH populations in terms of characteristics of patients, clinical pathways pre-diagnosis and diagnostic procedures, treatment patterns post diagnosis, clinical outcomes, and Healthcare Resource Utilisation (HCRU). IQVIA Solutions UK Limited, IQVIA Technology Services Limited, and Janssen Pharmaceuticals were the data controllers of the STHFT-HES data, and Janssen were the funders of the study. The study has now been finalized, and the findings are pending to be published.