The INSIGHT project: reflections on the co-production of a quality recognition programme to showcase excellence in public involvement in health and care research.

BACKGROUND: The quality of Patient and Public Involvement (PPI) in healthcare research varies considerably and is frequently tokenistic. We aimed to co-produce the Insight | Public Involvement Quality Recognition and Awards programme, based on the UK Standards for Public Involvement (UKSPI) alongside an incremental scale designed by Expert Citizens (a lived experience-led community group), to incentivise and celebrate continuous improvement in PPI. METHODS: We used Task and Finish Groups (19/44 [43%] public contributor membership) to co-produce the programme which we piloted in three organisations with different healthcare research models. We used surveys and review sessions to capture learning and reflections. RESULTS: We co-created: (1) A Quality descriptor matrix comprising four incremental quality levels (Welcoming, Listening, Learning, Leading) for each UKSPI standard. (2) An assessment framework including guidance materials, self-assessment form and final report template. (3) An assessor training package. (4) The quality awards event format and nomination form. These materials were modified based on pilot-site feedback. Of survey respondents: 94.4% felt they had made at least 'Some' personal contribution (half said 'Quite a lot'/'A great deal'), 88.9% said they were 'Always'/'Often' able to express their views freely and, 100% stated the programme would have 'A lot of impact'/'Quite a bit of impact'. During the project, we identified the importance of taking time to explain project aims and contributor roles, adapting to the needs of individual contributors and, using smaller bespoke sessions outside the main Task and Finish Groups. CONCLUSIONS: We co-produced and piloted a quality recognition programme to incentivise and celebrate continuous quality improvement in PPI. One public contributor stated, "I feel strongly that the Insight framework and awards will raise awareness of the [public involvement] work going on in many community settings. [It] is likely to result in better sharing of positive practice, incentivising research groups of any size to start work or to improve the quality of [PPI] could be one of the main benefits. I'm excited that if this initiative takes off, regionally and then in the longer term nationally, it could be a significant step in advancing the [public] voice."

How researchers involve members of the public in health research varies widely. We developed a scheme that encourages researchers from any health research organisation to improve the quality of public involvement. We used joint workshops with researchers, health workers and members of the public to design the scheme. We then tested it in three research organisations. We recorded the experience of people taking part in the project to learn what went well and what could be improved. We looked at the six areas covered in the UK Standards for Public Involvement. For each area, we worked together to define four levels (Welcoming, Listening, Learning, Leading) of increasing quality. We designed the materials needed for organisations to take part in the scheme. We also created a training pack for assessors and the format of a celebration event. We modified the materials after testing them. We asked those who took part in the project, half of whom were lay members, what they thought. 94% felt they had made at least some personal contribution. 89% said they were often or always able to express their views freely. Everyone thought the project would have some degree of impact. Overall, those members of the public who took part said they enjoyed the process and felt that their views were listened to. Along the way, we learned that it was important to carefully explain the project's aims, be clear about roles and have 1to1 discussions outside the main workshops.

The association between the Multiple Sclerosis Screening Questionnaire and objective measures of cognition: a systematic literature review and meta-analysis.

INTRODUCTION: The Multiple Sclerosis Screening Questionnaire (MSNQ) is a self-report measure used to assess cognitive difficulties in people with Multiple Sclerosis (PwMS). The aim of this systematic review was to determine the associations between the MSNQ and: objective measures of cognition, measures of mood, and quality of life measures. METHOD: A comprehensive search was done across three databases (PsycINFO, MEDLINE, and CINAHL). A total of 15 studies, including 1992 participants, were selected for final inclusion. Meta-analyses were conducted to determine the pooled effect size of associations. Where data were not available for meta-analyses, a narrative synthesis approach was taken. RESULTS: Significant, but small (r = -0.17), associations were found between the MSNQ and objective measures of cognition. Significant, moderate associations (r = 0.47) were found between the MSNQ and measures of mood. CONCLUSIONS: The small association between the MSNQ and objective measures of cognition shows that the measures do not converge well. However, their divergence may be important to map the broad construct of "cognitive ability" more fully. Limitations include a lack of reporting of non-significant effect sizes in individual studies. Clinical implications include the potential for the MSNQ to be used beyond being solely a proxy measure for objective cognition. Future research should investigate the associations between the informant version of the MSNQ and objective measures.

Suicide, self-harm and suicidal ideation during COVID-19: A systematic review.

We aimed to do a systematic review and meta-analysis of studies describing suicidal ideation, suicide attempts and suicide and associated risk factors during COVID-19 pandemic. We searched following electronic databases using relevant search terms: Medline, Embase, PsycInfo and CINAHL and systematically reviewed the evidence following PRISMA guidelines. The meta-analysis of prevalence of suicidal ideation was done using random effect model. The search returned 972 records, we examined 106 in full text and included 38 studies describing 120,076 participants. Nineteen studies described suicide or attempted self-harm, mostly in case reports. Out of 19 studies describing suicidal ideations, 12 provided appropriate data for meta-analysis. The pooled prevalence of suicidal ideation in these studies was 12.1% (CI 9.3-15.2). Main risk factors for suicidal ideations were: low social support, high physical and mental exhaustion and poorer self-reported physical health in frontline medical workers, sleep disturbances, quarantine and exhaustion, loneliness, and mental health difficulties. We provide first meta-analytic estimate of suicidal ideation based on large sample from different countries and populations. The rate of suicidal ideations during COVID pandemic is higher than that reported in studies on general population prior to pandemic and may result in higher suicide rates in future.

Pharmacological or non-pharmacological interventions for treatment of common mental disorders associated with Tuberculosis: A systematic review.

We aimed to review the literature on interventions for treating Common Mental Disorders (CMD) in people with Tuberculosis (TB). We followed PRISMA guidelines and the protocol was registered at PROSPERO. The electronic databases (PsycInfo, CINAHL, Medline, Google Scholar, Embase) were searched from 1982 to 2020. 349 relevant records were screened, with 26 examined at full text. 13 studies were included totalling 4326 participants. A meta-analysis was not possible due to nature of data, thus descriptive synthesis was conducted. Eleven studies evaluated psychosocial interventions, which significantly improved adherence or cure rates from TB, anxiety and depression. The elements of effective psychosocial interventions included; combating stigma, socioeconomic disadvantage, managing associated guilt and fear of contagion, and explanatory models of illness in local population. Two articles evaluated pharmacological interventions (antidepressants and Vitamin D). This is the first systematic review of interventions to treat CMD in TB. The studies were mostly low quality and mental health outcomes were not adequately described. However, this review suggests that it is feasible to develop and test interventions for improving mental health outcomes and enhancing treatment adherence in TB.

Switching antipsychotics to support the physical health of people with severe mental illness: a qualitative study of healthcare professionals' perspectives.

OBJECTIVES: The side effects of antipsychotic medications (APs) can increase the risk of developing physical health conditions. Some APs pose a higher risk than others. Evidence suggests switching to lower risk APs can support physical health outcomes. We sought to explore the views of healthcare professionals about switching antipsychotics to support physical health in people with severe mental illness (SMI). DESIGN: A qualitative study with semi-structured interviews conducted with general practitioners (GPs), psychiatrists and mental health nurses. The main focus was to explore participants' views on the physical health of people with SMI, the impact of APs and decision-making about switching medication to support physical health. Data were analysed thematically using principles of constant comparison. SETTINGS: Participants recruited through primary care and one mental health trust in the West Midlands. PARTICIPANTS: Interviews were conducted with 9 GPs, 10 psychiatrists and 4 mental health nurses. RESULTS: Awareness and knowledge of AP side-effects and risk profiles varied considerably between primary and secondary care clinicians. GPs reported limited awareness, while psychiatrists and nurses demonstrated a comprehensive understanding of AP risk profiles and side-effects. Mental health and control of symptoms were prioritised. Switching to promote physical health was considered as a reactive intervention, once side-effects or complications developed. There were a range of views over where responsibility lay for monitoring physical health and consideration of switching. Collaboration between primary and secondary care was identified as a way to address this. CONCLUSIONS: This study presents multidisciplinary perspectives on awareness, decision making, perceived responsibility and barriers to switching APs to support physical health. Collaborative approaches that involve liaison between primary and secondary care, but tailored to the individual patient, may support switching, and present an opportunity to intervene to address the physical health inequalities experienced by individuals with SMI.