Views on sharing mental health data for research purposes: qualitative analysis of interviews with people with mental illness.

BACKGROUND: Improving the ways in which routinely-collected mental health data are shared could facilitate substantial advances in research and treatment. However, this process should only be undertaken in partnership with those who provide such data. Despite relatively widespread investigation of public perspectives on health data sharing more generally, there is a lack of research on the views of people with mental illness. METHODS: Twelve people with lived experience of mental illness took part in semi-structured interviews via online video software. Participants had experience of a broad range of mental health conditions including anxiety, depression, schizophrenia, eating disorders and addiction. Interview questions sought to establish how participants felt about the use of routinely-collected health data for research purposes, covering different types of health data, what health data should be used for, and any concerns around its use. RESULTS: Thematic analysis identified four overarching themes: benefits of sharing mental health data, concerns about sharing mental health data, safeguards, and data types. Participants were clear that health data sharing should facilitate improved scientific knowledge and better treatments for mental illness. There were concerns that data misuse could become another way in which individuals and society discriminate against people with mental illness, for example through insurance premiums or employment decisions. Despite this there was a generally positive attitude to sharing mental health data as long as appropriate safeguards were in place. CONCLUSIONS: There was notable strength of feeling across participants that more should be done to reduce the suffering caused by mental illness, and that this could be partly facilitated by well-managed sharing of health data. The mental health research community could build on this generally positive attitude to mental health data sharing by following rigorous best practice tailored to the specific concerns of people with mental illness.

The Effect of School Bullying on Pupils' Perceived Stress and Wellbeing During the Covid-19 Pandemic: A Longitudinal Study.

PURPOSE: Establishing how the Covid-19 pandemic and related lockdowns have affected adolescent mental health is a key societal priority. Though numerous studies have examined this topic, few have focused on the wellbeing of pupils who experience school bullying. This is particularly important as pupils who experience bullying represent a vulnerable group at increased risk of mental illness. Therefore, we sought to investigate the relationship between experience of bullying and adolescent wellbeing during lockdown and subsequent re-opening of schools. METHODS: We used the TeenCovidLife dataset to examine the relationship between experience of bullying and pupils' perceived stress and wellbeing across three timepoints. Pupils aged 12-17 (n = 255) completed surveys during the first Covid-19 lockdown (May-July 2020), when they returned to school after the first lockdown (August-October 2020), and during the summer term of 2021 (May-June 2021). RESULTS: Perceived stress was higher in the group of pupils that experienced bullying than in the group that did not, though this difference between groups was smaller during lockdown than when pupils were attending school in person. Pupils who were bullied showed lower wellbeing across all timepoints. For the full sample of pupils, wellbeing was lowest (and perceived stress highest) at Time 3, one year after the first Covid-19 lockdown. CONCLUSION: The findings challenge previous assumptions that Covid-19 lockdowns were associated with a generalised decline in adolescent mental health. Instead, the picture is more nuanced, with perceived stress, though not wellbeing, varying according pupils' experiences of school bullying.

Patient satisfaction with mental and physical health services: Findings from a UK-wide online survey.

Introduction - Despite extensive debate surrounding mental health services in the UK, there is little empirical evidence regarding the views of those who use them. We therefore used data collected as part of a wider survey to examine satisfaction amongst those seeking treatment from mental and physical health services. Methods - An online survey designed with input from people with experience of mental illness was used to measure satisfaction with NHS mental and physical health services at first contact and in the previous 12 months. Results - A total of 2187 people responded. During the 12 months prior to the survey, 526 respondents had sought mental health care and 1379 had sought physical health care. Participants were significantly more satisfied with their most recent contact with mental health services (48.1% very/satisfied) than with their first contact (38.2% very/satisfied). More than 1 in 10 respondents who sought mental health care (11.4%) stated that they received no treatment/support from the NHS, compared to approximately 1 in 20 respondents who sought physical health care (4.6%). Of those who received the mental health treatment they requested (n = 424), most were satisfied or very satisfied with their care (54.7%), although this was lower than the corresponding figure (77.9%) for satisfaction with physical health care received (n = 1190). Conclusion -There was evidence that mental health services are satisfactory for a slim majority of users, but people were generally more satisfied with NHS physical health care. This survey was conducted in the year prior to the coronavirus disease 2019 pandemic. Future research could examine what influences satisfaction with care and whether this picture has changed following the emergence of the pandemic and consequent impact on health service delivery and daily life.

Co-development of a Best Practice Checklist for Mental Health Data Science: A Delphi Study.

Background: Mental health research is commonly affected by difficulties in recruiting and retaining participants, resulting in findings which are based on a sub-sample of those actually living with mental illness. Increasing the use of Big Data for mental health research, especially routinely-collected data, could improve this situation. However, steps to facilitate this must be enacted in collaboration with those who would provide the data - people with mental health conditions. Methods: We used the Delphi method to create a best practice checklist for mental health data science. Twenty participants with both expertise in data science and personal experience of mental illness worked together over three phases. In Phase 1, participants rated a list of 63 statements and added any statements or topics that were missing. Statements receiving a mean score of 5 or more (out of 7) were retained. These were then combined with the results of a rapid thematic analysis of participants' comments to produce a 14-item draft checklist, with each item split into two components: best practice now and best practice in the future. In Phase 2, participants indicated whether or not each item should remain in the checklist, and items that scored more than 50% endorsement were retained. In Phase 3 participants rated their satisfaction with the final checklist. Results: The final checklist was made up of 14 "best practice" items, with each item covering best practice now and best practice in the future. At the end of the three phases, 85% of participants were (very) satisfied with the two best practice checklists, with no participants expressing dissatisfaction. Conclusions: Increased stakeholder involvement is essential at every stage of mental health data science. The checklist produced through this work represents the views of people with experience of mental illness, and it is hoped that it will be used to facilitate trustworthy and innovative research which is inclusive of a wider range of individuals.

Using a knowledge exchange event to assess study participants' attitudes to research in a rapidly evolving research context.

Background: The UK hosts some of the world's longest-running longitudinal cohort studies, which make repeated observations of their participants and use these data to explore health outcomes. An alternative method for data collection is record linkage; the linking together of electronic health and administrative records. Applied nationally, this could provide unrivalled opportunities to follow a large number of people in perpetuity. However, public attitudes to the use of data in research are currently unclear. Here we report on an event where we collected attitudes towards recent opportunities and controversies within health data science. Methods: The event was attended by ~250 individuals (cohort members and their guests), who had been invited through the offices of their participating cohort studies. There were a series of presentations describing key research results and the audience participated in 15 multiple-choice questions using interactive voting pads. Results: Our participants showed a high level of trust in researchers (87% scoring them 4/5 or 5/5) and doctors (81%); but less trust in commercial companies (35%). They supported the idea of researchers using information from both neonatal blood spots (Guthrie spots) (97% yes) and from electronic health records (95% yes). Our respondents were willing to wear devices like a 'Fit-bit' (88% agreed) or take a brain scan that might predict later mental illness (73%). However, they were less willing to take a new drug for research purposes (45%). They were keen to encourage others to take part in research; whether that be offering the opportunity to pregnant mothers (97% agreed) or extending invitations to their own children and grandchildren (98%). Conclusions: Our participants were broadly supportive of research access to data, albeit less supportive when commercial interests were involved. Public engagement events that facilitate two-way interactions can influence and support future research and public engagement efforts.

Early life stress is associated with reduced avoidance of threatening facial expressions.

Early neglect or maltreatment has been associated with changes in children's processing of emotional facial expressions, including a hypersensitivity to the emotion of anger. This may facilitate the avoidance of danger in a maltreating environment. However, few studies have examined whether experiences of early life stress (ELS) are associated with atypical avoidance responses towards emotional facial expressions, or whether the effects of ELS can be observed in adult participants. The present study therefore examined the effects of ELS on adults' approach-avoidance tendencies towards angry, happy, and neutral facial expressions. Surprisingly, higher levels of ELS were associated with reduced avoidance of angry facial expressions among individuals with no evidence of mental illness. In contrast, there was no evidence of a relationship between ELS and avoidance of angry facial expressions among individuals with experience of mental illness. These novel findings suggest that ELS-related changes in social cognition can be observed years after the ELS itself occurred.

How does the brain process rhythm?

A region of the brain called the putamen has a central role in our ability to keep a beat in our head.

Evaluating the care of patients with malignant spinal cord compression at a regional cancer centre.

The consequences of malignant spinal cord compression (MSCC) can be devastating. If not detected early, MSCC can result in paralysis and significant bowel and bladder dysfunction that is not improved by treatment. Patients have to cope with sudden and unexpected disability alongside a diagnosis of advanced cancer. A multidisciplinary group was established within a cancer centre to review the care of patients with MSCC. Two linked studies were carried out: a staff questionnaire sent to senior medical staff and all nurses and an audit of documentation. The documentation audit reviewed the notes of 50 patients who had received radiotherapy for MSCC. The symptoms patients presented with on admission and before discharge demonstrated that many experienced significant physical problems as a consequence of developing MSCC. Usually, these symptoms were either unaffected by treatment, or had deteriorated further by the time of their discharge from hospital. The average number of days between admission with MSCC and death was 58.6 days (range 2 to 319 days). The project identified variations in practice in a range of aspects of care and provided clear evidence for the need to develop interventions in relation to specific concerns.