The Dementias Platform UK (DPUK) Data Portal.

The Dementias Platform UK Data Portal is a data repository facilitating access to data for 3 370 929 individuals in 42 cohorts. The Data Portal is an end-to-end data management solution providing a secure, fully auditable, remote access environment for the analysis of cohort data. All projects utilising the data are by default collaborations with the cohort research teams generating the data. The Data Portal uses UK Secure eResearch Platform infrastructure to provide three core utilities: data discovery, access, and analysis. These are delivered using a 7 layered architecture comprising: data ingestion, data curation, platform interoperability, data discovery, access brokerage, data analysis and knowledge preservation. Automated, streamlined, and standardised procedures reduce the administrative burden for all stakeholders, particularly for requests involving multiple independent datasets, where a single request may be forwarded to multiple data controllers. Researchers are provided with their own secure 'lab' using VMware which is accessed using two factor authentication. Over the last 2 years, 160 project proposals involving 579 individual cohort data access requests were received. These were received from 268 applicants spanning 72 institutions (56 academic, 13 commercial, 3 government) in 16 countries with 84 requests involving multiple cohorts. Projects are varied including multi-modal, machine learning, and Mendelian randomisation analyses. Data access is usually free at point of use although a small number of cohorts require a data access fee.

The True Colours Remote Symptom Monitoring System: A Decade of Evolution.

The True Colours remote mood monitoring system was developed over a decade ago by researchers, psychiatrists, and software engineers at the University of Oxford to allow patients to report on a range of symptoms via text messages, Web interfaces, or mobile phone apps. The system has evolved to encompass a wide range of measures, including psychiatric symptoms, quality of life, and medication. Patients are prompted to provide data according to an agreed personal schedule: weekly, daily, or at specific times during the day. The system has been applied across a number of different populations, for the reporting of mood, anxiety, substance use, eating and personality disorders, psychosis, self-harm, and inflammatory bowel disease, and it has shown good compliance. Over the past decade, there have been over 36,000 registered True Colours patients and participants in the United Kingdom, with more than 20 deployments of the system supporting clinical service and research delivery. The system has been adopted for routine clinical care in mental health services, supporting more than 3000 adult patients in secondary care, and 27,263 adolescent patients are currently registered within Oxfordshire and Buckinghamshire. The system has also proven to be an invaluable scientific resource as a platform for research into mood instability and as an electronic outcome measure in randomized controlled trials. This paper aimed to report on the existing applications of the system, setting out lessons learned, and to discuss the implications for tailored symptom monitoring, as well as the barriers to implementation at a larger scale.

Technological innovations in mental healthcare: harnessing the digital revolution.

Digital technology has the potential to transform mental healthcare by connecting patients, services and health data in new ways. Digital online and mobile applications can offer patients greater access to information and services and enhance clinical management and early intervention through access to real-time patient data. However, substantial gaps exist in the evidence base underlying these technologies. Greater patient and clinician involvement is needed to evaluate digital technologies and ensure they target unmet needs, maintain public trust and improve clinical outcomes.

Collaborative development of an electronic Personal Health Record for people with severe and enduring mental health problems.

BACKGROUND: Previous attempts to implement electronic Personal Health Records (ePHRs) underline the importance of stakeholder involvement. We describe the development of an ePHR for people with severe and enduring mental health problems, and provide a model of involving stakeholders throughout. METHODS: There were three stages to the development of the ePHR. These were 1) identifying and responding to user and clinical needs; 2) preliminary testing; and 3) preliminary implementation. Stakeholder involvement was pervasive in all stages. We collaborated with 133 stakeholders in the first stage, 13 in the second, and 26 in the third. On the micro-level, a service user researcher conducted much of the data collection and analysis. On the macro-level, a service user advisory group guided decisions throughout the project, and a service user was an active member of the project executive board and the implementation team. RESULTS: Service users and clinicians preferred an interactive ePHR with features such as access to care plans and care notes, a mood tracker, patient reported outcomes feeding into the clinical record, and social networking features. Many of the above were constructed following consultation with the relevant professionals, however further consultation is required before building a social networking function or providing access to full care notes. Service users positively rated the usability of the ePHR. Drop-in sessions helped service users access technology and learn how to use the ePHR. CONCLUSIONS: We outline four considerations for future developers of ePHRs: appeal, construction, ease of use, and implementation. Success rests on implementation in routine practice, so ePHRs must be intuitive and useful for both service users and staff. Continued involvement of end users throughout the design and testing process can help to achieve this goal.

Can't surf, won't surf: the digital divide in mental health.

BACKGROUND: New health information technology (HIT) increasingly plays a role in health care as technology becomes cheaper and more widespread. However, there is a danger that those who do not use or have access to technology will not benefit from HIT innovations, thus creating a "digital divide". AIMS: To assess the extent to which mental health service users have access to, skills in using and appetite for various technologies. METHODS: A cross-sectional survey was used to assess technology use and access patterns of 121 people from community mental health services. Data were analysed using logistic regression. RESULTS: Technology use and access were very similar to that of the general population with older individuals reporting less familiarity, access and confidence across a range of technologies. Black, minority and ethnic (BME) groups were more likely to access computers outside of their own homes than white individuals. Older participants experiencing psychosis indicated a desire to increase their computer use. CONCLUSIONS: The findings reported here contrast with recent evidence suggesting that those who do not engage with technology are "self-excluders". Furthermore, BME groups may need extra support regarding provision of technology in order to engage with HIT.

OPCRIT+: an electronic system for psychiatric diagnosis and data collection in clinical and research settings.

BACKGROUND: The increasingly large sample size requirements of modern adult mental health research suggests the need for a data collection and diagnostic application that can be used across a broad range of clinical and research populations. Aims To develop a data collection and diagnostic application that can be used across a broad range of clinical and research settings. METHOD: We expanded and redeveloped the OPCRIT system into a broadly applicable diagnostic and data-collection package and carried out an interrater reliability study of this new tool. RESULTS: OPCRIT+ performed well in an interrater reliability study with relatively inexperienced clinicians, giving a combined, weighted kappa of 0.70 for diagnostic reliability. CONCLUSIONS: OPCRIT+ showed good overall interrater reliability scores for diagnoses. It is now incorporated in the electronic patient record of the Maudsley and associated hospitals. OPCRIT+ can be downloaded free of charge at http://sgdp.iop.kcl.ac.uk/opcritplus.

Rapid progress or lengthy process? Electronic personal health records in mental health.

A major objective of many healthcare providers is to increase patients' participation in their own care. The introduction of electronic personal health records (ePHRs) may help to achieve this. An ePHR is an electronic database of an individual's health information, accessible to and maintained by the patient. ePHRs are very much in vogue, with an increasing number of studies reporting their potential utility as well as cost. However, the vast majority of these studies focus on general healthcare. Little attempt has been made to document the specific problems which might occur throughout the implementation of ePHRs in mental health. This review identifies such concerns through an electronic search of the literature. Several potential difficulties are highlighted and addressed, including access to information technology, identifying relevant populations and the handling of sensitive information. Special attention is paid to the concept of 'empowerment' and what this means in relation to ePHRs.

Impact of COVID-19 on telepsychiatry at the service and individual patient level across two UK NHS mental health Trusts.

BACKGROUND: The effects of COVID-19 on the shift to remote consultations remain to be properly investigated. OBJECTIVE: To quantify the extent, nature and clinical impact of the use of telepsychiatry during the COVID-19 pandemic and compare it with the data in the same period of the 2 years before the outbreak. METHODS: We used deidentified electronic health records routinely collected from two UK mental health Foundation Trusts (Oxford Health (OHFT) and Southern Health (SHFT)) between January and September in 2018, 2019 and 2020. We considered three outcomes: (1) service activity, (2) in-person versus remote modalities of consultation and (3) clinical outcomes using Health of the Nation Outcome Scales (HoNOS) data. HoNOS data were collected from two cohorts of patients (cohort 1: patients with ≥1 HoNOS assessment each year in 2018, 2019 and 2020; cohort 2: patients with ≥1 HoNOS assessment each year in 2019 and 2020), and analysed in clusters using superclasses (namely, psychotic, non-psychotic and organic), which are used to assess overall healthcare complexity in the National Health Service. All statistical analyses were done in Python. FINDINGS: Mental health service activity in 2020 increased in all scheduled community appointments (by 15.4% and 5.6% in OHFT and SHFT, respectively). Remote consultations registered a 3.5-fold to 6-fold increase from February to June 2020 (from 4685 to a peak of 26 245 appointments in OHFT and from 7117 to 24 987 appointments in SHFT), with post-lockdown monthly averages of 23 030 and 22 977 remote appointments/month in OHFT and SHFT, respectively. Video consultations comprised up to one-third of total telepsychiatric services per month from April to September 2020. For patients with dementia, non-attendance rates at in-person appointments were higher than remote appointments (17.2% vs 3.9%). The overall HoNOS cluster value increased only in the organic superclass (clusters 18-21, n=174; p<0.001) from 2019 to 2020, suggesting a specific impact of the COVID-19 pandemic on this population of patients. CONCLUSIONS AND CLINICAL IMPLICATIONS: The rapid shift to remote service delivery has not reached some groups of patients who may require more tailored management with telepsychiatry.

Home monitoring with technology-supported management in chronic heart failure: a randomised trial.

OBJECTIVES: We aimed to investigate whether digital home monitoring with centralised specialist support for remote management of heart failure (HF) is more effective in improving medical therapy and patients' quality of life than digital home monitoring alone. METHODS: In a two-armed partially blinded parallel randomised controlled trial, seven sites in the UK recruited a total of 202 high-risk patients with HF (71.3 years SD 11.1; left ventricular ejection fraction 32.9% SD 15.4). Participants in both study arms were given a tablet computer, Bluetooth-enabled blood pressure monitor and weighing scales for health monitoring. Participants randomised to intervention received additional regular feedback to support self-management and their primary care doctors received instructions on blood investigations and pharmacological treatment. The primary outcome was the use of guideline-recommended medical therapy for chronic HF and major comorbidities, measured as a composite opportunity score (total number of recommended treatment given divided by the total number of opportunities the treatment should have been given, with a score 1 indicating 100% adherence to recommendations). Co-primary outcome was change in physical score of Minnesota Living with Heart Failure questionnaire. RESULTS: 101 patients were randomised to 'enhanced self-management' and 101 to 'supported medical management'. At the end of follow-up, the opportunity score was 0.54 (95% CI 0.46 to 0.62) in the control arm and 0.61 (95% CI 0.52 to 0.70) in the intervention arm (p=0.25). Physical well-being of participants also did not differ significantly between the groups (17.4 (12.4) mean (SD) for control arm vs 16.5 (12.1) in treatment arm; p for change=0.84). CONCLUSIONS: Central provision of tailored specialist management in a multi-morbid HF population was feasible. However, there was no strong evidence for improvement in use of evidence-based treatment nor health-related quality of life. TRIAL REGISTRATION NUMBER: ISRCTN86212709.

The South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLAM BRC) case register: development and descriptive data.

BACKGROUND: Case registers have been used extensively in mental health research. Recent developments in electronic medical records, and in computer software to search and analyse these in anonymised format, have the potential to revolutionise this research tool. METHODS: We describe the development of the South London and Maudsley NHS Foundation Trust (SLAM) Biomedical Research Centre (BRC) Case Register Interactive Search tool (CRIS) which allows research-accessible datasets to be derived from SLAM, the largest provider of secondary mental healthcare in Europe. All clinical data, including free text, are available for analysis in the form of anonymised datasets. Development involved both the building of the system and setting in place the necessary security (with both functional and procedural elements). RESULTS: Descriptive data are presented for the Register database as of October 2008. The database at that point included 122,440 cases, 35,396 of whom were receiving active case management under the Care Programme Approach. In terms of gender and ethnicity, the database was reasonably representative of the source population. The most common assigned primary diagnoses were within the ICD mood disorders (n = 12,756) category followed by schizophrenia and related disorders (8158), substance misuse (7749), neuroses (7105) and organic disorders (6414). CONCLUSION: The SLAM BRC Case Register represents a 'new generation' of this research design, built on a long-running system of fully electronic clinical records and allowing in-depth secondary analysis of both numerical, string and free text data, whilst preserving anonymity through technical and procedural safeguards.

Developing a new model for patient recruitment in mental health services: a cohort study using Electronic Health Records.

OBJECTIVES: To develop a new model for patient recruitment that harnessed the full potential of Electronic Health Records (EHRs). Gaining access to potential participants' health records to assess their eligibility for studies and allow an approach about participation ('consent for contact') is ethically, legally and technically challenging, given that medical data are usually restricted to the patient's clinical team. The research objective was to design a model for identification and recruitment to overcome some of these challenges as well as reduce the burdensome (and/or time consuming) gatekeeper role of clinicians in determining who is appropriate or not to participate in clinical research. SETTING: Large secondary mental health services context, UK. PARTICIPANTS: 2106 patients approached for 'consent for contact'. All patients in different services within the mental health trust are gradually and systematically being approached by a member of the clinical care team using the 'consent for contact' model. There are no exclusion criteria. PRIMARY AND SECONDARY OUTCOME MEASURES: Provision of 'consent for contact'. RESULTS: A new model (the South London and Maudsley NHS Trust Consent for Contact model (SLaM C4C)) for gaining patients' consent to contact them about research possibilities, which is built around a de-identified EHR database. The model allows researchers to contact potential participants directly. Of 2106 patients approached by 25 October 2013, nearly 3 of every 4 gave consent for contact (1560 patients; 74.1%). CONCLUSIONS: The SLaM C4C model offers an effective way of expediting recruitment into health research through using EHRs. It reduces the gatekeeper function of clinicians; gives patients greater autonomy in decisions to participate in research; and accelerates the development of a culture of active research participation. More research is needed to assess how many of those giving consent for contact subsequently consent to participate in particular research studies.