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Clinical Practice Research Datalink (CPRD) access costs: response to Professor MacDonald and colleagues
In a recent letter to the BMJ (1), Professor Macdonald and colleagues expressed concerns around the costs of accessing CPRD data for research. However, our new pricing structure introduced in 2018 includes a research exemption enabling non-commercial organisations to access data services at a reduced cost. The aim of this response is to provide background information about CPRD and explain the CPRD pricing model.
For more than 30 years the Clinical Practice Research Datalink (CPRD) has provided research data services to support vital public health and clinical studies into the safety and use of medicines, health care delivery and disease risk factors. Research using CPRD data has resulted in over 2,200 peer-reviewed publications, informing clinical guidance and best practices. These include demonstrating the safety and protective effects of the pertussis vaccination in pregnancy on infants and the National Institute of Health and Care Excellence (NICE) blood pressure targets for patients with diabetes.
CPRD is a not-for-profit, cost recovery UK Government research data service based in the Medicines and Healthcare products Regulatory Agency (MHRA). Expenses are associated with flowing anonymised primary care data from 1,600 GP practices, processing and validating data to ensure a high quality research database that meets auditability standards while upholding patient confidentiality and compiling the data into a monthly, research ready database with accompanying meta-data and guidance for researchers. These costs must be recouped for CPRD operations to be sustainable.
Costs for accessing CPRD data services had not changed since 2009, despite rising operating costs and a threefold increase in volumes of data available for researchers. In 2018, CPRD carried out a pricing review, including a customer engagement exercise. A new, more simplified and transparent, model for accessing data resulted from customer feedback. This new model involved removing some of the previous arrangements such as additional payments for externally funded studies over the base rate, which academic organisations found difficult to budget for and operationalise.
Because the CPRD database is copyrighted, CPRD has been able to offer a research exemption, cost reduction to non-commercial organisations. This exemption applies to the annual multi-study licence (MSL) and to pay-as-you go dataset services. The new pricing model has resulted in up to 40% reduced costs for a full MSL for academic, NHS and government organisations, compared with previous full MSL charge. Commercial organisations pay the full costs of an MSL. Prices are clearly shown on the CPRD website (2). To enact the research exemption with the associated lower charge, it is not legally possible to distinguish between non-commercial organisations within the UK or internationally.
The price of an MSL equates to the price of five, single-study datasets and presents a streamlined and cost-effective data access route for institutions which plan to conduct five or more studies using CPRD data in a year. If any organisation, non-commercial or commercial, does not wish to take up an MSL, they are able to access CPRD data on a pay-as-you go basis. The current cost for a single study licence for a non-commercial institution is £15,000. To put this in context, typically, a single study would comprise of 3-4 related study objectives and can yield 2-4 peer-reviewed publications (3,4), further demonstrating the cost-effectiveness of research using CPRD data.
Over the past year there have been extensive communications with CPRD clients about the pricing changes and the roll-out of these changes have taken place over the past 12 months. To date, only one non-commercial research organisation has notified CPRD they will not be renewing their MSL. Despite cost reductions on a full MSL for non-commercial organisations, the pay-as-you go service may be a more cost-effective option for smaller organisations or organisations that use CPRD data less frequently.
References
1. Macdonald T, Bennie M, Robertson C, et al. Clinical Practice Research Datalink (CPRD): now unaffordable to many UK academics and NHS researchers. [electronic response to Wei et al. Incidence of type 2 diabetes mellitus in men receiving steroid 5α-reductase inhibitors: population based cohort study]. BMJ 2019. https://www.bmj.com/content/365/bmj.l1204/rr]
2. CPRD (2019) Pricing. https://www.cprd.com/pricing [date accessed: 30th August 2019]
3. CPRD (2019). Approved studies using CPRD Data. https://www.cprd.com/protocol-list [date accessed: 30th August 2019]
4. CPRD (2019). Bibliography. https://www.cprd.com/bibliography [date accessed: 30th August 2019]
Competing interests:
No competing interests
03 September 2019
Dr Janet Valentine
CPRD Director
MHRA, 10 South Colonnade, Canary Wharf, London E14 4PU UK
Re: Price hike makes access to patient data unaffordable, say researchers
Clinical Practice Research Datalink (CPRD) access costs: response to Professor MacDonald and colleagues
In a recent letter to the BMJ (1), Professor Macdonald and colleagues expressed concerns around the costs of accessing CPRD data for research. However, our new pricing structure introduced in 2018 includes a research exemption enabling non-commercial organisations to access data services at a reduced cost. The aim of this response is to provide background information about CPRD and explain the CPRD pricing model.
For more than 30 years the Clinical Practice Research Datalink (CPRD) has provided research data services to support vital public health and clinical studies into the safety and use of medicines, health care delivery and disease risk factors. Research using CPRD data has resulted in over 2,200 peer-reviewed publications, informing clinical guidance and best practices. These include demonstrating the safety and protective effects of the pertussis vaccination in pregnancy on infants and the National Institute of Health and Care Excellence (NICE) blood pressure targets for patients with diabetes.
CPRD is a not-for-profit, cost recovery UK Government research data service based in the Medicines and Healthcare products Regulatory Agency (MHRA). Expenses are associated with flowing anonymised primary care data from 1,600 GP practices, processing and validating data to ensure a high quality research database that meets auditability standards while upholding patient confidentiality and compiling the data into a monthly, research ready database with accompanying meta-data and guidance for researchers. These costs must be recouped for CPRD operations to be sustainable.
Costs for accessing CPRD data services had not changed since 2009, despite rising operating costs and a threefold increase in volumes of data available for researchers. In 2018, CPRD carried out a pricing review, including a customer engagement exercise. A new, more simplified and transparent, model for accessing data resulted from customer feedback. This new model involved removing some of the previous arrangements such as additional payments for externally funded studies over the base rate, which academic organisations found difficult to budget for and operationalise.
Because the CPRD database is copyrighted, CPRD has been able to offer a research exemption, cost reduction to non-commercial organisations. This exemption applies to the annual multi-study licence (MSL) and to pay-as-you go dataset services. The new pricing model has resulted in up to 40% reduced costs for a full MSL for academic, NHS and government organisations, compared with previous full MSL charge. Commercial organisations pay the full costs of an MSL. Prices are clearly shown on the CPRD website (2). To enact the research exemption with the associated lower charge, it is not legally possible to distinguish between non-commercial organisations within the UK or internationally.
The price of an MSL equates to the price of five, single-study datasets and presents a streamlined and cost-effective data access route for institutions which plan to conduct five or more studies using CPRD data in a year. If any organisation, non-commercial or commercial, does not wish to take up an MSL, they are able to access CPRD data on a pay-as-you go basis. The current cost for a single study licence for a non-commercial institution is £15,000. To put this in context, typically, a single study would comprise of 3-4 related study objectives and can yield 2-4 peer-reviewed publications (3,4), further demonstrating the cost-effectiveness of research using CPRD data.
Over the past year there have been extensive communications with CPRD clients about the pricing changes and the roll-out of these changes have taken place over the past 12 months. To date, only one non-commercial research organisation has notified CPRD they will not be renewing their MSL. Despite cost reductions on a full MSL for non-commercial organisations, the pay-as-you go service may be a more cost-effective option for smaller organisations or organisations that use CPRD data less frequently.
References
1. Macdonald T, Bennie M, Robertson C, et al. Clinical Practice Research Datalink (CPRD): now unaffordable to many UK academics and NHS researchers. [electronic response to Wei et al. Incidence of type 2 diabetes mellitus in men receiving steroid 5α-reductase inhibitors: population based cohort study]. BMJ 2019. https://www.bmj.com/content/365/bmj.l1204/rr]
2. CPRD (2019) Pricing. https://www.cprd.com/pricing [date accessed: 30th August 2019]
3. CPRD (2019). Approved studies using CPRD Data. https://www.cprd.com/protocol-list [date accessed: 30th August 2019]
4. CPRD (2019). Bibliography. https://www.cprd.com/bibliography [date accessed: 30th August 2019]
Competing interests: No competing interests