The use of healthcare data by commercial agencies attracts regular and frequent comment. This is entirely appropriate because it is an activity where risks and benefits need to be carefully considered.
On the one hand, the NHS does rely on Industry to deliver new investigations and treatments, and these can’t be effectively developed without access to clinical information – whether from patients directly or from routine healthcare data. On the other hand, there are clearly concerns about use of information for commercial purposes, as well as the need to maintain the security and confidentiality of information and to ensure the appropriateness of its use.
CRIS-derived data has been used in commercial partnerships at various times during the 10+ years since the development of the database, and these listed below to the best of our knowledge for transparency. Where possible, we have also sought to ensure that findings are published in open-access sources.
For Industry partnerships to date, the preferred protocol (applying to all studies listed below) has been for data to be accessed by university or Trust staff and the findings generated according to the specifications of the commercial partner, with no direct access to data by employees of the partners themselves. The only exceptions to this have been the preparation of a dataset for LA-SER to carry out a multi-site European study of paliperidone palmitate prescribing, and for Optum to provide a SLaM-commissioned service utilisation review, both projects carried out in 2014. These were carried out by employees of the commercial partner and were covered by the standard confidentiality and security agreements for any agency working with Trust data. CRIS data remained within the Trust’s firewall at all times.
Where funding is received from these partnerships, it is kept distinct in a separate account and its use is governed by the CRIS Oversight Committee. As a principle, the funds are directed towards covering the costs incurred in maximising the utility of the CRIS platform; for example, recent funds have been used to support the data linkage between CRIS and Hospital Episode Statistics.
Projects completed or in progress
Health and social care costs associated with different levels of cognitive function in dementia: this project was funded by a pre-competitive consortium between King’s College London, Pfizer, Janssen and Lundbeck. Findings have been published
Developing a mechanism to ascertain negative symptoms of schizophrenia in mental healthcare clinical text: this project was funded by Roche. Findings have been published
Investigating the performance of an algorithm to detect parkinsonian adverse effects in people receiving antipsychotic polypharmacy: this project was carried out in collaboration with In Silico Biosciences. Findings have been published
Investigating mental healthcare contacts before and after commencement of paliperidone palmitate maintenance: this project was funded by Janssen. Findings were presented at the Schizophrenia International Research Society in 2019 and we hope will be published in a peer-reviewed journal during 2020.
Development and evaluation of algorithms to ascertain treatment-resistant depression and depression associated with high suicide risk in routine mental healthcare records: this project has been funded by Janssen beginning initially with algorithm development and descriptions of characteristics of these sub-groups of depression. Subsequent work in late 2021 further developed the treatment-resistance algorithm and provided information on levels of service use for economic analyses.
Identifying markers of treatment-resistance and clozapine non-response using the CRIS dataset. This study was nested within the Schizophrenia Treatment Resistance And Therapeutic Advances (STRATA) research programme and was funded by H Lundbeck & Co AS, Discovery Pharmacol Res. Finding are currently being written up for multiple peer-reviewed publications which we plan to submit in the near future. Methods and results have been presented separately at:
CRIS 10-year anniversary celebration (December 2018)
NIHR Maudsley BRC Conference 2019 (September 2019)
Industry-supported CRIS-based PhD programmes
A current PhD studentship is part-supported by GSK, investigating patterns of hospitalisation associated with dementia progression: https://kclpure.kcl.ac.uk/portal/en/persons/usha-gungabissoon(fdcb2cc7-f36f-420a-82f3-9cf0cddd2d9b).html
A Takeda-funded PhD studentship is investigating the emergence and progression of cognitive impairment in schizophrenia: https://kclpure.kcl.ac.uk/portal/en/persons/aurelie-mascio(eed3c6f7-779a-4ab0-bcd3-3ba96369076b).html
In addition to the specific projects listed above, CRIS data analyses carried out by university/Trust staff have supported several successful research programmes which have incorporated both academic and commercial partners. These include Pheme (https://www.pheme.eu/), KConnect (http://www.kconnect.eu/), and an MRC Immunopsychiatry consortium (https://gtr.ukri.org/projects?ref=MR%2FL014815%2F1).