NHS Digital Data Release Register - reformatted

King's College London

Project 1 — DARS-NIC-15530-P7L1F

Opt outs honoured: N

Sensitive: Sensitive

When: 2017/06 — 2017/08.

Repeats: Ongoing

Legal basis: Health and Social Care Act 2012

Categories: Anonymised - ICO code compliant

Datasets:

  • Improving Access to Psychological Therapies Data Set

Benefits:

Sexual minority individuals suffer excess rates of mental health problems such as anxiety and depression and are more likely to self-harm or attempt suicide (e.g. Chakraborty et al., 2011; Elliott et al., 2014; King et al., 2008). The NHS Constitution for England states that the NHS "has a wider social duty to promote equality through the services it provides and to pay particular attention to groups or sections of society where improvements in health… are not keeping pace with the rest of the population". The DoH (2011) report “No Health Without Mental Health” identified monitoring of access to services, experience and outcome by sexual orientation as a priority. This project will undertake the evaluation of whether there is equitable access and treatment experiences for lesbian, gay and bisexual individuals in primary care psychological therapies services. This is the first such evaluation of IAPT service provision across England. If inequalities of access or treatment outcomes are identified, the authors will make recommendations about the next steps needed to help improve these health services. The nature of the recommendations will depend on the findings – for example it is possible that particular subgroups, such as sexual minorities who are older or who are also from a minority ethnic background, have reduced access or poorer treatment outcomes. It may be that particular outreach activities to target these groups or additional staff training may be required. The recommendations will be fed back to the National IAPT team who oversee IAPT services in England and the authors will liaise with them about how recommendations may be implemented. They will also be able to assist with dissemination to the local IAPT services. As mentioned above, the findings and recommendations will be disseminated at national conferences attended by IAPT therapists.

Outputs:

KCL plan to publish the results of this analysis in a peer-reviewed journal and disseminate to the relevant health service providers, including the HSCIC. The health services for which it will be most applicable will be Increasing Access to Psychological Therapies services in England. The paper will be published on KCL’s website, subject to any copyright / publishing restrictions by the journal. KCL plan to present the findings at a conference relevant to the health professionals working in these healthcare services, e.g. the annual conference for the British Association of Behavioural and Cognitive Psychotherapies. It is not possible to specify an exact target date as this depends on the time taken to prepare the dataset, analyse the complex data and write up for publication. In all cases, all outputs will be at aggregated level and small numbers will be suppressed in line with NHS Digital guidelines.

Processing:

The data will be used to investigate whether, compared to heterosexual individuals, do LGB people show similar referral levels / pathways, presenting symptoms, treatment access, patient experience and treatment outcomes. KCL aim to investigate whether there is variation depending on the intersection between sexual orientation and other characteristics (e.g. gender, ethnicity or disability, employment status, religion? A further question concerns the disclosure of sexual orientation. This is only recently being collected in IAPT services and KCL will investigate whether willingness to disclose sexual orientation varies according to factors such as age, ethnicity, gender, religion and so on.

Objectives:

The DoH (2011) strategy document “No Health Without Mental Health” stated that “A priority action for securing improved outcomes is to achieve routine local monitoring of access to services, experience and outcome by sexual orientation”. Assessing referral, access to assessment / treatment, experience and outcomes will help to determine whether service provision is equitable and appropriate for LGB patients. Identifying specific areas of need will highlight where changes are required. This project, conducted by King’s College London (KCL), aims to evaluate treatment access and experience for lesbian, gay and bisexual (LGB) individuals with common mental health problems in relation to Improving Access to Psychological Interventions (IAPT) services in England. The objective is to establish whether there is equitable access and experience for this minority population, and if not, to identify areas are important targets for improvement.


Project 2 — DARS-NIC-309328-R9V1C

Opt outs honoured: Y

Sensitive: Non Sensitive

When: 2016/04 (or before) — 2016/08.

Repeats: Ongoing

Legal basis: Section 251 approval is in place for the flow of identifiable data

Categories: Identifiable

Datasets:

  • MRIS - List Cleaning Report

Benefits:

While the use of list cleaning data will not have any immediate benefits to health and/or social care, the data obtained from patients who consent to take part in the study could lead to considerable advancements in the care of patients with schizophrenia within 5-10 years. Identifying a stratifier of treatment resistance in schizophrenia could allow clinicians to identify medication more suited to their patients, far more quickly than current clinical practice. This could save some patients many years in hospital on medication which has considerable side effects and is not the best medication strategy for them.

Outputs:

If patients, contacted using this data, consent to participate in the study they will provide a blood sample and history of their medication use. This data will be pseudonymised and combined with other data to form part of a wider analysis to examine treatment-resistant schizophrenia. Patient data will be connected to a unique ID number. This ID number will also be on patients’ consent form, which is the only place their name, address, and identifiable details will be stored. The data from these patients will be combined with data from other patients who have taken part in in multiple first episode studies from around the world. In this final dataset, totaling approximately 3000 patients, patients will only be identified by a unique ID number (please note that this will be different to the ID number used when ex-AESOP patients are seen). STRATA will receive no identifiable patient information (names, addresses) other than date of birth. This dataset is the combined output which will be shared with other researchers working on STRATA. It will also be combined with a separate part of STRATA, which is approved under a separate ethics application, which is recruiting patients with chronic schizophrenia for an imaging study. Combined, the imaging study results and results from the sample of 300 first episode patients who have been followed up will be used to develop a stratifier of treatment response. This stratifier will be a method (imaging, genetics, or a combination of the two) which can be used in clinical practice when a patient first presents with psychotic symptoms to determine whether they will respond to conventional antipsychotic medication or not. STRATA is planning a clinical trial, which will be pre-registered and is due to start in 2017, to test this stratifier in a clinical setting. Other parts of STRATA are working on the socioeconomics of using such a stratifier and patient’s opinions of the acceptability of such a stratifier (the latter of which has been published; Service user's and carer's views on research towards stratified medicine in psychiatry: A qualitative study. Rose, D., Papoulias, C., MacCabe, J. & Walke, J. 28 Sep 2015 In : BMC Research Notes. 8, 1, 489). The results produced by STRATA will be published in peer review journals (for example, Biological Psychiatry, Schizophrenia Research, etc.) and presented at conferences (for example, the Schizophrenia International Research Society Conference, the World Congress of Psychiatric Genetics, etc.)

Processing:

The details on patients who were originally recruited at the Nottingham site will be sent via secure transfer to a specified user at Nottingham University. The details on patients who were originally recruited in South London will be retained by a specific user at KCL. Addresses or GP addresses will be used to send letters to patients. Or, if phone numbers are available, patients will be contacted by telephone using the telephone script which has been approved by the ethics committee. In all cases, the researchers will attempt to consult with the patient’s responsible clinician or care coordinator about whether the patient is well enough to be contacted. The study will be explained to the patients over the phone and they will then be given at least 24 hours to think about participating and discuss the study with family and friends. The patients will then be seen by the specified user at either Nottingham University or KCL and the study will be explained again, informed consent will be taken, a blood sample will be taken, and the patients will be asked to fill in a few questionnaires. This informed consent includes consent for re-contact regarding any future studies and up to date contact details. Once a patient has been seen, the information received from the HSCIC will be destroyed. The data will not be stored, processed or be in any other way accessible to a third party. Co-investigators based at other organisations (as mentioned in the study protocol) will only have access to aggregated outputs.

Objectives:

Data will allow King’s College London (KCL) to locate patients and invite them to participate in a study called STRATA. The patients were originally involved in a study called AESOP and were recruited into the study in 1998-1999 at one of two sites (Nottingham and South East London). AESOP recruited first episode psychosis studies to investigate the epidemiological factors relating to first episode psychosis in a cohort representative of the local population. Informed consent was taken for AESOP, and while it was not standard practice at that time to take consent for re-contact, the Section 251 approval permits KCL to contact patients who did not explicitly give consent to be contacted about future studies. The objective of STRATA is to explore the predictors of treatment-resistant schizophrenia. Previous studies examining treatment-resistance have recruited patients with chronic schizophrenia and have therefore been biased towards more treatment-resistant patients. STRATA includes only first episode patients to minimise this bias. STRATA will therefore have proportions of treatment-resistant and treatment-responsive patients who reflect those found in the general population of schizophrenia patients. However, as it can take an average of four years to determine whether a patient is treatment-resistant, STRATA is including first episode studies where the patients have been followed up for some time. The most recent AESOP follow up time point was 10 years. Some patients were unable to be traced and staff issues at the time meant that blood samples were not collected from all the patients who were traced. Since a key hypothesis of STRATA is that genetic factors will be able to predict which patients are resistant to antipsychotic medication and which will respond to antipsychotic, all patients included in the study must have DNA data extracted from a blood sample.