Data

Over the last 5 years, the Akrivia Health team and its NHS Network Partners have been developing the world’s largest and most in-depth dataset focused upon psychiatry clinical records.

It is comprised of 2.7m de-identified patient records and 440 billion data points from 11 NHS mental health hospitals in the UK.

This combination of large scale de-identified records, longitudinal clinical pathway data and structured data using international standards is enabling precision psychiatry modelling to be conducted for the first-time.

What type of data

The data within the platform is de-identified patient data contained in end-to-end clinical pathways and cover each interaction and intervention that takes place between a patient and their clinician.

Data is made available for all mental illness and dementia domains in both structured and unstructured format.

Information is sourced from multiple Electronic Patent Records and comprises clinical notes, patient histories, admission and discharge documents and clinical assessments.

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Akrivia Health in numbers

de-identified patient records

years of clinical interactions

clinical data points

clinical notes

clinical attachments

Who provides the data

We receive 2.7 million de-identified patient records on a regular basis from our NHS Network Partners comprised of 11 organisations across the UK.

Our network is only comprised of specialist care providers of mental illness and dementia services which patients can access in hospitals or their own homes.

Our Network Partners help to manage the data and conduct their own clinical research to improve the care given.

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Information Governance

Akrivia Health works with its Network Partners to apply technology, processes and organisational controls to the data in order to safeguard patient data and individual privacy.

Our processes and technology remove all personal information from the medical records and structures the dataset so that modelling and analysis outputs are only available in an aggregated format.

The data is securely stored in an ISO 27001 compliant data centre in the UK and undergoes regular external audits and security testing to ensure the highest standards are maintained.

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FAQs

Does Akrivia Health sell the patient data to pharmaceutical companies to run drug trials?

The data is not sold as we operate a data services model.  Registered Network individuals can work with de-identified aggregated data by using the analytics platform. To protect privacy, it is not possible for individuals or small groups of individuals to be identified. However, one of the intended uses of the data is to improve the efficiency of drug trials to speed up access to new drugs for patients at a lower cost. 

Do all patients make their data available if their hospital is a Network Partner?

All patients reserve the right to opt out of the data processing by contacting the hospital that they are receiving treatment and care from. We adhere to all relevant statutory requirements relating to processing data in the UK

Where is the data being stored?

All data is stored in electronic format by the individual hospital from which the patient receives treatment or care. Each hospital will be the Data Controller for that individual’s data. Data is extracted from each hospital’s patient management system under a contractual agreement with each trust and securely stored by UK-SeRP at the University of Swansea on behalf of Cristal Health Limited (branded as Akrivia Health) who is the Data Processor. 

What data standards are being used to ensure the data is kept safe?

We use a robust information governance model to safely manage data and protect individual privacy. Any suppliers engaged will need to demonstrate that they meet all appropriate industry standards and certification as required by the NHS, ICO and EDPB e.g. ISO 27001. Additional boards will be added to the governance model to ensure there is appropriate oversight and that stakeholder views are represented.

What can you do with the data?

Registered Network individuals can work with the de-identified aggregated data by using the analytics platform. Akrivia Health is currently developing pre-defined algorithms and tools to be able to query the structured and unstructured data. Results will be provided on an aggregated basis to protect individuals’ privacy.

In addition, Akrivia Health can provide consulting support to determine more complex models to be generated.

Are patients involved in the business as it is their data?

We actively encourage advice and feedback from patient and public groups on its work. Where appropriate, patient representatives are appointed onto Governance structures that are established. As part of our Corporate Social Responsibility planswe will measure and report on the actual impact that we have for patients.