About Us

IQVIA Ltd is part of the IQVIA Inc. group of companies serving the combined industries of health information technologies and clinical research worldwide. We specialise in the provision of products and services including medical research and analytical solutions to healthcare and life sciences organisations. In the UK, IQVIA has collected and supported the research use of non-identified patient data for over 20 years.

The Cancer Data Network Research Database (CDNRD) 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.

Pursuant to data protection legislation, IQVIA is the data controller of the Cancer Data Network Research Database.

We are registered in England and Wales as: IQVIA Ltd, registration number: 03022416 and the registered address is 3 Forbury Place, 23 Forbury Road, Reading, United Kingdom, RG1 3JH

What information is included in the Cancer Data Network Research Database (CDNRD)?

The Cancer Data Network Research Database is non-identified, consisting of data such as:

• Patient details: year of birth, sex, ethnicity, height, weight
• Clinical information: diagnoses, procedures, operations,
• Cancer treatment plan and therapy dispense details
• Clinical events: appointment dates, diagnoses, procedures and other clinical events.
• Mortality data: Date of death and underlying cause of death

The IQVIA™ Cancer Data Network Medical Research Data does NOT include any direct patient identifiers such as names, addresses, NHS numbers, or full dates of birth, nor any direct identifers of hospital clinicians. Data can be extracted from the participating NHS Trust’s clinical systems via the CDN appliance where the oncology data is non-identified based on a bespoke patient data extract template created for IQVIA. Opt-out patient data is filtered using the MESH interface from NHSD. The files are encrypted before data transmission to IQVIA’s CDN Datawarehouse. The data received by IQVIA is non-identified. The individual patient-level data are accessed by employees of IQVIA and academic researchers from universities.

The purpose for which the data is processed and used

Cancer Data Network Research Database (CDNRD) will provide opportunities for Outcomes research studies. These studies will help understand the value of cancer treatments and their effectiveness in curing cancer to evaluate the best treatment pathways for patients. The research database will help researchers undertake Real World Data studies for publications. It will also help researchers answer the below scientific priorities such as

• Natural history of disease
• Real world effectiveness (Overall Survival (OS), Progression Free Survival (PFS))
• Treatment patterns
• Treatment pathway analysis and comparison
• Diagnostic algorithm development studies
• Outcomes research
• Real world safety/adverse events

IQVIA processes the data on the basis of its legitimate interests in supporting medical research and, because it is necessary for the above scientific research purposes, subject always to appropriate safeguards. Technical and organisational measures are in place to ensure only non-identified data is used.

IQVIA collaborates on medical and academic studies in the areas listed above, and uses patient level and aggregated forms of the data for treatment analysis, to provide insights into cancer patient diagnosis and treatment profiles.

Ethics approval

The use of Cancer Data Network Research Database (CDNRD) for the purpose of medical research and for supplying the data to external researchers for scientifically approved studies under Data Sharing Agreements has been approved by the NHS Health Research Authority (NHS Research Ethics Committee).

https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/cancer-data-network-research-database-cdnrd/

A list of publications relating to studies that have used Cancer Data Network Research data is available on the IQVIA Real-World Insights bibliography.

Who is the IQVIA™ CDN Research Data made available to?

IQVIA carries out research on behalf of or makes the data available to the research groups including:

• Providers / commissioners of healthcare services: NHS healthcare providers, private secondary care providers, NHS England, Public Health England, and regulatory bodies
• Academics / universities
• Life science industries: pharmaceutical companies, medical device companies, Industry bodies
• Other: patient groups and healthcare related charities

The Cancer Data Network Research Data may only be made available to external researchers for protocol-driven studies under specific Data Sharing Agreement (DSA) terms that restrict use of the data.

CDNRD Study Protocol Review

All study protocol requests are subject to review by an Independent Scientific Advisory Committee (ISEAC) who review the proposed study design. If ISEAC approves the study, it is logged on an access control register and the IQVIA researchers are allowed to access data. The researchers will present the results of their analysis to external organisations in the form of aggregated, small number suppressed tables. These outputs may also take the form of counts, proportions or formulae. CDNRD data may be accessed by academic researchers for approved protocol research under the same strict conditions applied to IQVIA researchers.

ISEAC is a group of medical and scientific advisors who are independent of IQVIA. For studies based on CDNRD data the role of this committee is to ensure that any study performed is compliant with the CDN data sharing agreement and by extension, the Care Act 2014. All ISEAC decisions are binding, and any studies not approved will not be performed unless revised and subsequently approved.

All studies are required to show scientific merit, fulfil the research purpose outlined, and demonstrate potential benefit to health and social care.

Data Retention

CDN Research Data consists of all available non-identified cancer patient treatment data. In order for studies using patient data to be scientifically sound, all information relating to a cancer patient’s past medical events should be considered for longitudinal treatment analysis. Historical data on patient treatment at the hospital is important because the lead up to cancer diagnosis and cure can be complex and lengthy. IQVIA as information service provider, could be founded on drug usage related to patients receiving long-term treatment plans, which could span over multiple years. The contracted rules related to specific patterns of clinical usage could be based on extended time periods. This provides a lawful basis for such a retention period.

IQVIA retains data in accordance with UK Medical Research Council (MRC) guidelines which recommend basic research data and related material be retained for a minimum of 10 years after the study has been completed. This is to support good research practice which requires research studies to be reproducible.

https://mrc.ukri.org/documents/pdf/retention-framework-for-research-data-and-records/

Security

IQVIA’s CDN has implemented an Information Security Management System (ISMS) and IQVIA Ltd is certified as being compliant with the ISO 27001 standard.

IQVIA has put in place appropriate technical and organisational security measures to ensure a level of security appropriate to the risk and to prevent accidental or unlawful destruction, loss, alteration, unauthorised access to or disclosure of the data. Access to the data is strictly controlled and limited internally to authorised personnel. External use and access is governed by Data Sharing Agreements which are legally binding agreements detailing confidentiality and the terms on which the data is shared, used, stored and accessed. IQVIA stores the CDN Research Data on secure servers located in the UK and European Economic Area (EEA). We have put in place appropriate security measures to prevent unauthorised access to or disclosure of the CDNRD data. Access to the data is strictly controlled and limited to authorised IQVIA personnel.

Consent and patient rights

Data is collected in line with the requirements of applicable data protection law.

Information on the processing of patients´ data will be made available from the participating NHS hospitals that are contributing data in accordance with applicable legislation, including the ‘EU Regulation 2016/679 on the protection of natural persons with regard to the processing of Personal Data and on the free movement of such data’ (“GDPR”). The national patient opt-out database maintained by NHS Digital is used as reference for filtering opt-out patient data before extracting the oncology patient data for research.

NHS Trusts will additionally provide for the exercise of patients´ rights, including access, rectification, objection to processing and erasure, in accordance with GDPR requirements. Patients have the right to opt out of research data processing and this can be done via the NHS Digital’s website (https://www.nhs.uk/your-nhs-data-matters/). Patients are informed by means of patient leaflets in their hospitals that their data is collected for scientific research and they can withdraw their consent at any time. Any patients that have dissented on NHS Digital are recorded as non-consenting and will no longer be included in the CDN data extracts from that point forward.

Patients have the right to request rectification of their personal data, or restriction of processing of personal data concerning the data subject, or to object to the processing of such personal data, as well as the right to data portability. This can only be done by the patients contacting their hospitals. https://www.nhs.uk/your-nhs-data-matters/

Changes to this Notice

We may update this notice from time to time. We encourage you to review this notice periodically to stay informed about how we are using and protecting Cancer Data Network Research Data. Any changes to this notice take effect immediately after being posted or otherwise provided by us.

Contact details

Questions and comments regarding this notice should be addressed to Kalpana Gunasekaran at IQVIA, 37 North Wharf Road, London, W2 1AF or emailed to our Data Protection Officer Barbara Bressolles at eu.dpo@iqvia.com. If you have unresolved concerns, you also have the right to complain to the Information Commissioner´s Office website at https://ico.org.uk/.