Identifying barriers to outpatient appointment attendance in patient groups at risk of inequity: a mixed methods study in a London NHS trust.

BACKGROUND: There is significant health inequity in the United Kingdom (U.K.), with different populations facing challenges accessing health services, which can impact health outcomes. At one London National Health Service (NHS) Trust, data showed that patients from deprived areas and minority ethnic groups had a higher likelihood of missing their first outpatient appointment. This study's objectives were to understand barriers to specific patient populations attending first outpatient appointments, explore systemic factors and assess appointment awareness. METHODS: Five high-volume specialties identified as having inequitable access based on ethnicity and deprivation were selected as the study setting. Mixed methods were employed to understand barriers to outpatient attendance, including qualitative semi-structured interviews with patients and staff, observations of staff workflows and interrogation of quantitative data on appointment communication. To identify barriers, semi-structured interviews were conducted with patients who missed their appointment and were from a minority ethnic group or deprived area. Staff interviews and observations were carried out to further understand attendance barriers. Patient interview data were analysed using inductive thematic analysis to create a thematic framework and triangulated with staff data. Subthemes were mapped onto a behavioural science framework highlighting behaviours that could be targeted. Quantitative data from patient interviews were analysed to assess appointment awareness and communication. RESULTS: Twenty-six patients and 11 staff were interviewed, with four staff observed. Seven themes were identified as barriers - communication factors, communication methods, healthcare system, system errors, transport, appointment, and personal factors. Knowledge about appointments was an important identified behaviour, supported by eight out of 26 patients answering that they were unaware of their missed appointment. Environmental context and resources were other strongly represented behavioural factors, highlighting systemic barriers that prevent attendance. CONCLUSION: This study showed the barriers preventing patients from minority ethnic groups or living in deprived areas from attending their outpatient appointment. These barriers included communication factors, communication methods, healthcare the system, system errors, transport, appointment, and personal factors. Healthcare services should acknowledge this and work with public members from these communities to co-design solutions supporting attendance. Our work provides a basis for future intervention design, informed by behavioural science and community involvement.

What is the feasibility and patient acceptability of a digital system for arm and hand rehabilitation after stroke? A mixed-methods, single-arm feasibility study of the 'OnTrack' intervention for hospital and home use.

OBJECTIVES: Arm weakness is common after stroke; repetitive activity is critical for recovery but people struggle with knowing what to do, volume, and monitoring progress. We studied the feasibility and acceptability of OnTrack, a digital intervention supporting arm and hand rehabilitation in acute and home settings. DESIGN: A mixed-method, single-arm study evaluating the feasibility of OnTrack for hospital and home use. An independent process evaluation assessed the intervention's fidelity, dose and reach. Amendments to the protocol were necessary after COVID-19. SETTING: Acute stroke services and home settings in North West London. PARTICIPANTS: 12 adults with a stroke diagnosis <6 months previously (first or recurrent) requiring arm rehabilitation in hospital and/or home. INTERVENTION: 12 weeks using the OnTrack system comprising arm tracking and coaching support for self-management. PRIMARY AND SECONDARY OUTCOME MEASURES: Recruitment, retention and completion rates; compliance and adherence to the intervention; reasons for study decline/withdrawal.Intervention fidelity and acceptability, evaluated through an independent process evaluation.Patient measures including activity baseline, healthcare activation, arm function and impairment collected at baseline, week 7 and week 14 of participation to assess suitability for a randomised controlled trial (RCT). RESULTS: 181 individuals screened, 37 met eligibility criteria, 24 recruited (65%); of these, 15 (63%) were recruited before COVID-19, and 9 (37%) during. 12 completed the intervention (50%). Despite COVID-19 disruptions, recruitment, retention and completion were in line with prestudy expectations and acceptable for a definitive trial. Participants felt the study requirements were acceptable and the intervention usable. Fidelity of delivery was acceptable according to predetermined fidelity markers. Outcome measures collected helped determine sample size estimates and primary outcomes for an RCT. CONCLUSIONS: The intervention was found to be usable and acceptable by participants; study feasibility objectives were met and demonstrated that a definitive RCT would be viable and acceptable. TRIAL REGISTRATION NUMBER: NCT03944486.

Reflection on modern methods: constructing directed acyclic graphs (DAGs) with domain experts for health services research.

Directed acyclic graphs (DAGs) are a useful tool to represent, in a graphical format, researchers' assumptions about the causal structure among variables while providing a rationale for the choice of confounding variables to adjust for. With origins in the field of probabilistic graphical modelling, DAGs are yet to be widely adopted in applied health research, where causal assumptions are frequently made for the purpose of evaluating health services initiatives. In this context, there is still limited practical guidance on how to construct and use DAGs. Some progress has recently been made in terms of building DAGs based on studies from the literature, but an area that has received less attention is how to create DAGs from information provided by domain experts, an approach of particular importance when there is limited published information about the intervention under study. This approach offers the opportunity for findings to be more robust and relevant to patients, carers and the public, and more likely to inform policy and clinical practice. This article draws lessons from a stakeholder workshop involving patients, health care professionals, researchers, commissioners and representatives from industry, whose objective was to draw DAGs for a complex intervention-online consultation, i.e. written exchange between the patient and health care professional using an online system-in the context of the English National Health Service. We provide some initial, practical guidance to those interested in engaging with domain experts to develop DAGs.

Do patients and family carers have different concerns about the use of medicines compared with healthcare professionals? A quantitative secondary analysis of healthcare concerns relating to adults with complex needs.

OBJECTIVE: To identify concerns related to the use of medicines for adults with complex needs and explore whether these differed between healthcare professionals and patients/carers, in order to inform development of interventions to increase medication adherence. METHODS: A quantitative secondary analysis of a database of healthcare professionals' and patients'/carers' healthcare concerns, related to adults with complex needs. Categories of concerns related to medicines use were identified and concerns related to medication use coded against these. Data were analysed descriptively, and a Chi-square test conducted to test for differences in responses from healthcare professionals versus patients/carers. RESULTS: There was a significant difference in the types of medication concern raised by healthcare professionals versus those raised by patients/carers. Patients/carers expressed more concerns about side effects and interactions; healthcare professionals identified more concerns related to patient support and carers' knowledge/training. CONCLUSION: Healthcare professionals had significantly different concerns about medicines to patients; this may be a potential barrier to medication adherence. PRACTICE IMPLICATIONS: Healthcare professionals may need to adopt an approach to non-adherence that goes beyond education and counselling and adopts a wider patient perspective. Findings suggest that a greater focus on addressing side effects and interactions may be beneficial in increasing medication adherence.

Opening a "Can of Worms" to Explore the Public's Hopes and Fears About Health Care Data Sharing: Qualitative Study.

BACKGROUND: Evidence suggests that health care data sharing may strengthen care coordination, improve quality and safety, and reduce costs. However, to achieve efficient and meaningful adoption of health care data-sharing initiatives, it is necessary to engage all stakeholders, from health care professionals to patients. Although previous work has assessed health care professionals' perceptions of data sharing, perspectives of the general public and particularly of seldom heard groups have yet to be fully assessed. OBJECTIVE: This study aims to explore the views of the public, particularly their hopes and concerns, around health care data sharing. METHODS: An original, immersive public engagement interactive experience was developed-The Can of Worms installation-in which participants were prompted to reflect about data sharing through listening to individual stories around health care data sharing. A multidisciplinary team with expertise in research, public involvement, and human-centered design developed this concept. The installation took place in three separate events between November 2018 and November 2019. A combination of convenience and snowball sampling was used in this study. Participants were asked to fill self-administered feedback cards and to describe their hopes and fears about the meaningful use of data in health care. The transcripts were compiled verbatim and systematically reviewed by four independent reviewers using the thematic analysis method to identify emerging themes. RESULTS: Our approach exemplifies the potential of using interdisciplinary expertise in research, public involvement, and human-centered design to tell stories, collect perspectives, and spark conversations around complex topics in participatory digital medicine. A total of 352 qualitative feedback cards were collected, each reflecting participants' hopes and fears for health care data sharing. Thematic analyses identified six themes under hopes: enablement of personal access and ownership, increased interoperability and collaboration, generation of evidence for better and safer care, improved timeliness and efficiency, delivery of more personalized care, and equality. The five main fears identified included inadequate security and exploitation, data inaccuracy, distrust, discrimination and inequality, and less patient-centered care. CONCLUSIONS: This study sheds new light on the main hopes and fears of the public regarding health care data sharing. Importantly, our results highlight novel concerns from the public, particularly in terms of the impact on health disparities, both at international and local levels, and on delivering patient-centered care. Incorporating the knowledge generated and focusing on co-designing solutions to tackle these concerns is critical to engage the public as active contributors and to fully leverage the potential of health care data use.

CCopeY: A Mixed-Methods Coproduced Study on the Mental Health Status and Coping Strategies of Young People During COVID-19 UK Lockdown.

PURPOSE: Exploring the impact of the COVID-19 pandemic on young people's mental health is an increasing priority. Studies to date are largely surveys and lack meaningful involvement from service users in their design, planning, and delivery. The study aimed to examine the mental health status and coping strategies of young people during the first UK COVID-19 lockdown using coproduction methodology. METHODS: The mental health status of young people (aged 16-24) in April 2020 was established utilizing a sequential explanatory coproduced mixed methods design. Factors associated with poor mental health status, including coping strategies, were also examined using an online survey and semi-structured interviews. RESULTS: Since the lockdown, 30.3% had poor mental health, and 10.8% had self-harmed. Young people identifying as Black/Black-British ethnicity had the highest increased odds of experiencing poor mental health (odds ratio [OR] 3.688, 95% CI .54-25.40). Behavioral disengagement (OR 1.462, 95% CI 1.22-1.76), self-blame (OR 1.307 95% CI 1.10-1.55), and substance use (OR 1.211 95% CI 1.02-1.44) coping strategies, negative affect (OR 1.109, 95% CI 1.07-1.15), sleep problems (OR .915 95% CI .88-.95) and conscientiousness personality trait (OR .819 95% CI .69-.98) were significantly associated with poor mental health. Three qualitative themes were identified: (1) pre-existing/developed helpful coping strategies employed, (2) mental health difficulties worsened, and (3) mental health and nonmental health support needed during and after lockdown. CONCLUSION: Poor mental health is associated with dysfunctional coping strategies. Innovative coping strategies can help other young people cope during and after lockdowns, with digital and school promotion and application.

Reflections, impact and recommendations of a co-produced qualitative study with young people who have experience of mental health difficulties.

BACKGROUND: There is limited evidence of genuine equal partnership where power is shared with young people with mental health difficulties throughout all research stages, particularly in data collection and analysis. OBJECTIVE: To describe how our qualitative study, exploring young peoples' perceptions on the feasibility of using technology to detect mental health deterioration, was co-produced using principles of co-production, whilst reflecting on impact, challenges and recommendations. METHODS: Young people with experience of mental health difficulties were appointed and then worked with researchers throughout all research stages. The study was evaluated against the five principles of co-production. Reflections from researchers and young people were collected throughout. RESULTS: Seven young people formed an initial Young People's Advisory Group (YPAG); three became co-researchers. Reflection was key throughout the process. Sharing power became easier and more evident as trust, confidence and mutual respect grew over time, particularly after a safe space was established. The safe space was crucial for open discussions, and our WhatsApp group enabled continual communication, support and shared decision-making. The resulting co-produced topic guide, coding framework, thematic map, papers and presentations demonstrated significant impact. CONCLUSIONS: To our knowledge, this is the first qualitative mental health study to be co-produced using the principles of co-production. Our rigorous assessment can be utilized as an informative document to help others to produce meaningful co-produced future research. Although co-production takes time, it makes significant impact to the research, researchers and co-researchers. Flexible funding for spontaneous suggestions from co-researchers and more time for interview training is recommended.

Usability and Acceptability of Home-based Self-testing for Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) Antibodies for Population Surveillance.

BACKGROUND: This study assesses acceptability and usability of home-based self-testing for severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) antibodies using lateral flow immunoassays (LFIA). METHODS: We carried out public involvement and pilot testing in 315 volunteers to improve usability. Feedback was obtained through online discussions, questionnaires, observations, and interviews of people who tried the test at home. This informed the design of a nationally representative survey of adults in England using two LFIAs (LFIA1 and LFIA2) which were sent to 10 600 and 3800 participants, respectively, who provided further feedback. RESULTS: Public involvement and pilot testing showed high levels of acceptability, but limitations with the usability of kits. Most people reported completing the test; however, they identified difficulties with practical aspects of the kit, particularly the lancet and pipette, a need for clearer instructions and more guidance on interpretation of results. In the national study, 99.3% (8693/8754) of LFIA1 and 98.4% (2911/2957) of LFIA2 respondents attempted the test and 97.5% and 97.8% of respondents completed it, respectively. Most found the instructions easy to understand, but some reported difficulties using the pipette (LFIA1: 17.7%) and applying the blood drop to the cassette (LFIA2: 31.3%). Most respondents obtained a valid result (LFIA1: 91.5%; LFIA2: 94.4%). Overall there was substantial concordance between participant and clinician interpreted results (kappa: LFIA1 0.72; LFIA2 0.89). CONCLUSIONS: Impactful public involvement is feasible in a rapid response setting. Home self-testing with LFIAs can be used with a high degree of acceptability and usability by adults, making them a good option for use in seroprevalence surveys.