Akrivia Health team and its Healthcare Partners have developed the world’s largest and most in-depth dataset focused on mental health and dementia.
It is comprised of over 4.6 million de-identified patient records and billions of data points from numerous healthcare organisations, including some of the largest mental health providers 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 Patient Records and comprises clinical notes, patient histories, admission and discharge documents and clinical assessments.
Who provides the data
We receive over 4.6 million de-identified patient records on a regular basis from our Healthcare Partners.
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 Healthcare Partners help to manage the data and conduct their own clinical research to improve the care given.
The NHS Healthcare Organisation sites that Akrivia Health work with are located across England and Wales. Our sites are located in areas with significant socio-economic and ethnic diversity. They incorporate major metropolitan hot spots with high amounts of existing research, such as London, Cardiff and Birmingham, but also involve areas with lower amounts of existing research activity, such as the North East. We are supplementing our main trial sites with recruitment support from a diverse range of primary care practices in order to further increase the depth and breadth of the study’s reach.
Information Governance
1Healthcare organisations work with Akrivia Health to curate and anonymise their patient records
2The Trust securely sends the data to Akrivia
3Akrivia Health ‘de-personalises’ (all personal data removed) the data so the NHS can use this for research and service improvement
4Data is further curated and anonymised to government standards
5NHS and Akrivia Health partners can query this anonymous dataset in support of research and service improvement
6Answers to questions are provided as numerical results i.e. 22% of patients, 152 matches
Akrivia Health works with its Healthcare 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.
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 Healthcare 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 Amazon Web Services (AWS) 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 plans, we will measure and report on the actual impact that we have for patients.
