THIN-HES Privacy Notice
GP practices in England that contributed to the The Health Improvement Network (THIN) data collection scheme between 2011 and 2014 have their non-identified patient data linked with Hospital Episode Statistics (HES) data for the purpose of producing enhanced datasets for use in medical research studies.
This linkage methodology was created by a trusted third party using secure encryption technology to link patient records without compromising patient confidentiality. As of September 2017, non-identified records of 2.5 million patients from 162 practices contributing to THIN have been linked with HES data.
What information is included in THIN-HES data?
HES data linked to THIN provides additional non-identified details about patients and healthcare professionals dealing with clinical events which have taken place in hospital. These include:
- Clinical information: diagnoses, procedures, operations
- Additional key information about the patient: year of birth, gender, ethnicity
- Administrative information: waiting times, dates and methods of admission / discharge
- Maternity information: gestation, method and date of delivery, complications, birth weight, length of stay
- Adult Critical Care: high dependency and intensive care dates
- Outpatient attendance: appointment dates, diagnoses, procedures
- Accident and Emergency: attendance dates, diagnoses
- Healthcare Professionals: Type of health care professional dealing with outpatient attendance and main speciality of consultant for inpatient episode
THIN-HES data does NOT include any direct patient identifiers such as names, addresses, NHS numbers, or full dates of birth.
The purpose for which THIN-HES data is processed and used
This data may be processed and used for the purpose of medical research strictly in the following areas:
- Drug safety
- Public health research (including clinical audit)
- Drug Utilisation Studies (DUS)
- Post Authorisation Safety Studies (PASS)
- Outcomes research
- Health economics research
- Resource utilisation
The data may be used to support medical research studies investigating the relationship between primary and secondary care events. It can also be used to help validate diagnoses recorded in primary care, confirm dates of hospital events and provide further insights on hospital outcomes.
Although THIN data alone may contain data that refers to a hospitalisation episode, it is only through THIN-HES linkage that other key information (such as hospital procedures, emergency admissions, length of stay) can be established.
IQVIA processes the THIN-HES data on the basis of legitimate interests in supporting medical research and because it is necessary for the above scientific research purposes, subject always to appropriate safeguards. Technical and organisation measures are in place to ensure only non-identified data is used.
Who is the data made available to?
IQVIA carries out research on behalf of or makes data available to, the following research groups only:
- 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
THIN-HES data is only made available to researchers for protocol driven studies under specific Data Sharing Agreement terms that restrict use of the data.
The THIN-HES database can only be used for medical research uses and cannot be used for commercial purposes such as conducting analysis for insurance companies, sales and marketing or for understanding sales force performance.
THIN-HES Study Protocol Review
All study protocols MUST be approved by a recognised scientific review board. As of June 2017, in addition to the THIN study protocol review by the Scientific Review Committee (SRC), all proposed medical research studies using THIN-HES are subject to review and approval by the Independent Scientific Ethical Advisory Committee (ISEAC).
All studies are required to show scientific merit, fulfil the research purpose outlined, and demonstrate potential benefit to health and social care.
IQVIA holds linked THIN-HES data records from 1997 to 2018. 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 affect their current care. Historical data on patient contact with secondary care is important because the lead up to diagnosis of many conditions, particularly rare diseases, can be complex and lengthy. In addition, longitudinal data are increasingly important in, for example, 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.
IQVIA has implemented an Information Security Management System. IQVIA Solutions UK Ltd is accredited to the ISO 27001 standard and IQVIA World Publications has an NHS approved Information Governance Toolkit (IGT) assessment.
IQVIA stores the THIN-HES data records on secure servers located in the UK. We have put in place appropriate security measures to prevent unauthorised access to or disclosure of the THIN-HES 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.
Consent and patient rights
Data is collected in line with the requirements under applicable data protection law. Patients have the right to request the erasure of their data from the THIN-HES database and this can be done via the patient’s GP practice. Patients are informed by means of posters in their GP practice that their data is collected for scientific research and they can withdraw their consent at any time by notifying the practice. Any patients that have dissented from THIN data collection are recorded as non-consenting and are removed together with all their records from the THIN database and subsequently from the linked data IQVIA holds.
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. Patients would need to contact 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 THIN-HES data. Any changes to this notice take effect immediately after being posted or otherwise provided by us.
Questions and comments regarding this notice should be addressed to Louise Pinder at IQVIA, 210 Pentonville Road, London, N1 9JY or to firstname.lastname@example.org
IQVIA Solutions UK Limited and IQVIA World Publications Limited (“IQVIA/we/us/our”) are 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.
For the purpose of this privacy notice and pursuant to data protection legislation, IQVIA is the data controller of the THIN-HES data.
We are registered in England and Wales as: IQVIA World Publications Ltd, registration number: 01124807 and IQVIA Solutions UK Limited, registration number: 00634325 and our registered office is 210 Pentonville Road, London, N1 9JY.