Guidance for researchers wanting to link NHS data using non-consent approaches:a thematic analysis of feedback from the Health Research Authority Confidentiality Advisory Group

Introduction: The use of linked data and non-consent methodologies is a rapidly growing area of health research due to the increasing detail, availability and scope of routinely collected electronic health records data. However, gaining the necessary legal and governance approvals to undertake data linkage is a complex process in England. / Objectives: We reflect on our own experience of establishing lawful basis for data linkage through Section 251 approval, with the intention to build a knowledgebase of practical advice for future applicants. / Methods: Thematic analysis was conducted on a corpus of Section 251 feedback reports from the NHS Health Research Authority Confidentiality Advisory Group. / Results: Four themes emerged from the feedback. These were: (a) Patient and Public Involvement, (b)~Establishing Rationale, (c) Data maintenance and contingency, and the need to gain (d) Further Permissions from external authorities prior to full approval. / Conclusions: Securing Section 251 approval poses ethical, practical and governance challenges. However, through a comprehensive, planned approach Section 251 approval is possible, enabling researchers to unlock the potential of linked data for the purposes of health research

Recovery from severe mental health problems: a systematic review of service user and informal caregiver perspectives

Introduction: The recovery approach aims to have users' perspectives at the heart of service development and research; it is a holistic perspective that considers social needs, personal growth and inclusion. In the last decade recovery-oriented research and practice has increased greatly, however, a comprehensive model of recovery considering exclusively the perspectives of people with lived experience has not been devised. Aims: This review aimed to develop a framework and contextualize service users' and informal caregivers' understanding of recovery from severe mental health problems. Methods: We systematically searched 6 databases including key terms related to knowledge, experience and narratives AND mental health AND personal recovery. The search was supplemented with reference sourcing through gray literature, reference tracking and expert consultation. Data analysis consisted of a qualitative meta-synthesis using constant comparative methods. Results: Sixty-two studies were analyzed. A pattern emerged regarding the recovery paradigms that the studies used to frame their findings. The resulting recovery framework included the domains Social recovery; Prosperity (Legal, political, and economic recovery); Individual Recovery; and Clinical Recovery Experience (SPICE). Service users' definitions of recovery tended to prioritize social aspects, particularly being accepted and connecting with others, while caregivers focused instead on clinical definitions of recovery such as symptom remission. Both groups emphasized individual aspects such as becoming self-sufficient and achieving personal goals, which was strongly linked with having economic means for independence. Conclusions: The recovery model provided by this review offers a template for further research in the field and a guide for policy and practice. Predominant definitions of recovery currently reflect understandings of mental health which focus on an individual perspective, while this review found an important emphasis on socio-political aspects. At the same time, only a small number of studies took place in low-income countries, focused on minoritized populations, or included caregivers' perspectives. These are important gaps in the literature that require further attention. Systematic Review Registration: The review protocol was registered on PROSPERO (CRD42017076450); https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=76450

Inpatient use and area-level socio-environmental factors in people with psychosis

Purpose: There is consistent evidence that socio-environmental factors measured at an area-level, such as ethnic density, urban environment and deprivation are associated with psychosis risk. However, whether area-level socio-environmental factors are associated with outcomes following psychosis onset is less clear. This study aimed to examine whether the number of inpatient days used by people presenting to mental health services for psychosis was associated with five key area-level socio-environmental factors: deprivation, ethnic density, social capital, population density and social fragmentation. Methods: Using a historical cohort design based on electronic health records from the South London and Maudsley NHS Trust Foundation electronic Patient Journey System, people who presented for the first time to SLAM between 2007 and 2010 with psychosis were included. Structured data were extracted on age at presentation, gender, ethnicity, residential area at first presentation and number of inpatient days over 5 years of follow-up. Data on area-level socio-environmental factors taken from published sources were linked to participants’ residential addresses. The relationship between the number of inpatient days and each socio-environmental factor was investigated in univariate negative binomial regression models with time in contact with services treated as an offset variable. Results: A total of 2147 people had full data on area level outcomes and baseline demographics, thus, could be included in the full analysis. No area-level socio-environmental factors were associated with inpatient days. Conclusion: Although a robust association exists between socio-environmental factors and psychosis risk, in this study we found no evidence that neighbourhood deprivation was linked to future inpatient admissions following the onset of psychosis. Future work on the influence of area-level socio-environmental factors on outcome should examine more nuanced outcomes, e.g. recovery, symptom trajectory, and should account for key methodological challenges, e.g. accounting for changes in address

Costs of the police service and mental healthcare pathways experienced by individuals with enduring mental health needs

Background Substantial policy, communication and operational gaps exist between mental health services and the police for individuals with enduring mental health needs. Aims To map and cost pathways through mental health and police services, and to model the cost impact of implementing key policy recommendations. Method Within a case-linkage study, we estimated 1-year individual-level healthcare and policing costs. Using decision modelling, we then estimated the potential impact on costs of three recommended service enhancements: street triage, Mental Health Act assessments for all Section 136 detainees and outreach custody link workers. Results Under current care, average 1-year mental health and police costs were £10 812 and £4552 per individual respectively (n = 55). The cost per police incident was £522. Models suggested that each service enhancement would alter per incident costs by between −8% and +6%. Conclusions Recommended enhancements to care pathways only marginally increase individual-level costs

Gender, marginalised groups, and young people’s mental health: a longitudinal analysis of trajectories

Background Individuals from marginalised groups experience higher levels of mental health difficulties and lower levels of wellbeing which may be due to the exposure to stress and adversity. This study explores trajectories of mental health over time for young women and girls and young people with other marginalised identities.Methods We conducted a secondary analysis on N=14,215 children and young people (7,501 or 52.8% female, 6,571 or 46.2% male, and 81 or 0.6% non-binary or questioning) who completed a survey at age 11 to 12 years and at least one other annual survey aged 12 to 13 years and/or aged 13 to 14 years. We used group-based trajectory models to examine mental health difficulties.Results Except for behavioural difficulties, young women’s and girls’ trajectories showed that they consistently had higher levels of mental health difficulties compared to young men and boys. A similar pattern was shown for nonbinary and questioning children and young people. Children and young people with economic disadvantage and/or special education needs, and/or for whom there were welfare concerns, were generally more likely to experience higher levels of mental health difficulties.Conclusions This information could inform public policy, guidance and interventions

Out of Pocket Expenses in Obsessive Compulsive Disorder

Background: Despite anecdotal evidence that the out of pocket costs of OCD can be substantial in some cases, there is no evidence on how many people they affect, or the magnitude of these costs. Aims: This paper explores the type and quantity of out of pocket expenses reported by a large sample of adults with OCD. Methods: Data on out of pocket expenses were collected from participants taking part in the OCTET multi-centre randomised controlled trial. Participants were aged 18+, meeting DSM-IV criteria for OCD, and scoring 16+ on the Yale Brown Obsessive Compulsive Scale. Individual-level resource use data including a description and estimated cost of out of pocket expenses were measured using an adapted version of the Adult Service Use Schedule (AD-SUS): a questionnaire used to collect data on resource use. Results: Forty-five percent (208/465) reported out of pocket expenses due to their OCD. The mean cost of out of pocket expenses was £19.19 per week (SD £27.56 SD), range £0.06–£224.00. Conclusions: Future economic evaluations involving participants with OCD should include out of pocket expenses, but careful consideration of alternative approaches to the collection and costing of this data is needed

Guidance for researchers wanting to link NHS data using non-consent approaches: a thematic analysis of feedback from the Health Research Authority Confidentiality Advisory Group

Introduction The use of linked data and non-consent methodologies is a rapidly growing area of health research due to the increasing detail, availability and scope of routinely collected electronic health records data. However, gaining the necessary legal and governance approvals to undertake data linkage is a complex process in England. Objectives We reflect on our own experience of establishing lawful basis for data linkage through Section 251 approval, with the intention to build a knowledgebase of practical advice for future applicants. Methods Thematic analysis was conducted on a corpus of Section 251 feedback reports from the NHS Health Research Authority Confidentiality Advisory Group. Results Four themes emerged from the feedback. These were: (a) Patient and Public Involvement, (b)~Establishing Rationale, (c) Data maintenance and contingency, and the need to gain (d) Further Permissions from external authorities prior to full approval. Conclusions Securing Section 251 approval poses ethical, practical and governance challenges. However, through a comprehensive, planned approach Section 251 approval is possible, enabling researchers to unlock the potential of linked data for the purposes of health research