IQVIA Medical Research Data Privacy Notice

About Us

IQVIA Ltd is part of the IQVIA 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, life sciences and other organisations with an interest in medical and health research. In the UK, IQVIA has collected and supported the research use of non-identified patient data for over 20 years.

IQVIA Medical Research Data (IMRD) is non-identified electronic patient health record data supplied from UK General Practioner (GP) clinical systems via the IQVIA Medical Research Extraction Scheme and Cegedim Rx Limited (“Cegedim”) and used for medical and public health research and treatment analysis.

Pursuant to data protection legislation, IQVIA is the data controller of the IQVIA Medical Research Data.

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 IQVIA Medical Research Data?

The IQVIA Medical Research Data is non-identified, consisting of data such as:

  • Patient details: year of birth, sex, GP practice registration date, practice de-registration date
  • Morbidity data: symptoms, diagnoses with dates, referrals to hospitals
  • Prescribed medication: all prescriptions with date issued, drug name, formulation, strength, quantity, dosing instructions
  • Immunisations: all in-practice immunisations
  • Lab tests and and other health data: smoking status, height, weight, blood pressures, pregnancy, birth, death

The IQVIA Medical Research Data does NOT include any direct patient identifiers such as names, addresses, NHS numbers, or full dates of birth, nor any direct identifiers of GP practices participating in this data collection scheme. Data can be extracted from a number of clinical systems via the schemes listed below:

IQVIA Medical Research Extraction Scheme (MRES)

IQVIA has set up the Medical Research Extraction Scheme (MRES) to collect the non-identified coded data extracted from GP practices in the UK that use EMIS Health and SystmOne clinical management systems. GP practices who have agreed to participate in MRES contribute data to IQVIA Medical Research Data which is used for medical and public health research and treatment analysis.

The Health Improvement Network (THIN)

IQVIA has partnered with Cegedim through a licence agreement for the supply and use of the THIN database for medical and public health research and treatment analysis.

THIN is a Cegedim Database, which is licensed to IQVIA by Cegedim and incorporated into IQVIA’s Medical Research Data products and services.

The purpose for which the data is processed and used

The IQVIA Medical Research Data may be processed and used for the purpose of medical and public health research in the following areas but not limited to:

  • Epidemiology
  • Pharmacoepidemiology
  • Drug safety
  • Public health research (including clinical audit)
  • Drug Utilisation Studies (DUS)
  • Post Authorisation Safety Studies (PASS)
  • Outcomes research
  • Health economics research
  • Resource utilisation
  • Morbidity & mortality research
  • Risk management
  • Treatment analysis and comparison

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

IQVIA faciltates medical and public health research conducted by academic and commercial researchers in the disciplines listed above. IQVIA also uses aggregated forms of the data for treatment analysis, to provide insights into patient, disease and prescribing profiles.

Ethics approval

The use of IQVIA Medical Research Data for the purpose of medical and public health 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 ref 18/LO/0441).

https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/the-health-improvement-network-thin-database/

A list of publications relating to studies that have used IQVIA Medical Research Data is available on the IQVIA Real-World Insights bibliography: http://www.rwebibliography.com/

Who is the IQVIA Medical Research Data made available to?

IQVIA carries out research on behalf of, or makes the data available to researchers from academic, public health, charitable, commercial and regulatory bodies.

The IQVIA Medical Research Data may only be made available to external researchers for scientific studies for medical and public health research purposes under specific Data Sharing Agreement (DSA) terms that restrict use of the data.

Study Protocol Review

All proposed medical research studies using IQVIA Medical Research Data are subject to scientific review and all publications MUST be based on protocols approved by a recognised scientific review board. The Committee that reviews IQVIA Medical Research Data protocols is the Scientific Review Committee (SRC).

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

Data Retention

IQVIA Medical Research Data consists of all available non-identified patient electronic health records. In order for studies using patient data to be scientifically sound, all information relating to a patient’s past medical events should be considered as this will influence their doctor’s decision and affects their current care. Longitudinal historical records on patient contact with their GP are important because the lead up to diagnosis of many conditions, particularly rare diseases, can be complex and lengthy. In addition, longitudinal data is increasingly valuable, for example, in studying chronic conditions, when a long history is required 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.

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 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 suitable 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 IQVIA Medical Research Data on secure servers located in the United Kingdom (UK) and the European Economic Area (EEA). If information is required to be transferred outside the UK or the EEA to a country that is not subject to an adequacy decision by the UK Information Commissioner or the EU Commission, data is adequately protected by UK Information Commissioner or EU Commission-approved standard contractual clauses.

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 GP practices that are contributing data in accordance with applicable legislation, including the Data Protection Act 2008 and the UK General Data Protection Regulation (UK GDPR). The GP practices are also responsible for obtaining any necessary patient consents, if required by UK GDPR, for the processing of their personal data for the anticipated research purposes.

Each GP practice will additionally provide for the exercise of patients´ rights, including access, rectification, objection to processing and erasure, in accordance with UK GDPR requirements. Patients have the right to opt out of their data being used for purposes beyond their individual care and treatment. Patients are informed by means of posters in their GP practice that their data is collected for scientific research and they can opt-out at any time by contacting their GP practice. Alternatively patients can directly opt out of sharing their data via the National Data Opt-out Policy service. https://digital.nhs.uk/services/national-data-opt-out. Any patients that have opted-out from THIN or the IQVIA Medical Research Extraction Scheme will no longer be included in the data extracts from that point forward.

Patients have the right to request rectification of their personal data, or restriction of processing of personal data 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 GP to exercise these rights.

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 IQVIA Medical Research Data. Any changes to this notice take effect immediately after being posted on this webpage or otherwise provided by us.

Contact details

Questions and comments regarding this notice should be addressed to Louise Pinder at IQVIA The Point, 37 North Wharf Road, Paddington, London, W2 1AF or emailed to eu.dpo@iqvia.com.

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