Patient and public involvement in the development of health services: Engagement of underserved populations in a quality improvement programme for inflammatory bowel disease using a community-based participatory approach.

INTRODUCTION: Involving people with lived experience is fundamental to healthcare development and delivery. This is especially true for inflammatory bowel disease (IBD) services, where holistic and personalised models of care are becoming increasingly important. There is, however, a significant lack of representation of underserved and diverse groups in IBD research, and there are significant barriers to healthcare access and utilisation among minority groups in IBD. IBD centres need to be aware of these experiences to address barriers via service changes, improve interactions with local communities and promote meaningful engagement for improved health outcomes. METHODS: A pragmatic community-based approach was taken to engage with leaders and members of underserved groups across 11 workshops representing Roma, Afro-Caribbean, people of African descent and the wider black, Asian and minority ethnic (BAME) communities, Muslim women, refugee community members, deprived areas of South Yorkshire, LGBTQ+ and deaf populations. Thematic analysis of field notes identified patterns of attention across the community groups and where improvements to services were most frequently suggested. RESULTS: Findings demonstrated several barriers experienced to healthcare access and utilisation, including language accessibility, staff attitudes and awareness, mental health and stigma, continuity of support, and practical factors such as ease of service use and safe spaces. These barriers acted as a lever to co-producing service changes that are responsive to the health and social care needs of these groups. CONCLUSIONS: Engaging with people from a range of communities is imperative for ensuring that service improvements in IBD are accessible and representative of individual needs and values. PATIENT OR PUBLIC CONTRIBUTION: Local community leaders and members of community groups actively participated in the co-design and development of improvements to the IBD service for a local hospital. Their contributions further informed a pilot process for quality improvement programmes in IBD centres.

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.

A protocol for a systematic review of randomised evaluations of strategies to improve recruitment of rural participants to randomised controlled trials.

INTRODUCTION: People living rurally face health inequities fuelled by social exclusion, access to and awareness of health services, and poor transport links. In order to improve the acceptability, accessibility and applicability of health and care interventions, it is important that clinical trial participant populations include people living rurally. Identifying strategies that improve recruitment of rural participants to trials will support trialists, reduce research waste and contribute to alleviating health inequalities experienced by rural patients. The objective of the review is to quantify the effects of randomised evaluations of strategies to recruit rural participants to randomised controlled trials. METHODS: The following databases will be searched for relevant studies: Ovid MEDLINE, Embase, Cochrane Library, Web of Science All, EBSCO CINAHL, Proquest, ERIC, IngentaConnect, Web of Science SSCI and AHCI, and Scopus. Any randomised evaluation of a recruitment intervention aiming to improve recruitment of rural participants to a randomised trial will be included. We will not apply any restriction on publication date, language or journal. The primary, and only, outcome of our review will be the proportion of participants recruited to a randomised controlled trial. Two reviewers will independently screen abstracts and titles for eligible studies, and then full texts of relevant records will be reviewed by the same two reviewers. Where disagreements cannot be resolved through discussion, a third reviewer will adjudicate. RESULTS: We will assess the methodological quality of individual studies using the Cochrane risk of bias tool, and the GRADE approach will be applied to determine the certainty of the evidence within each comparison. CONCLUSION: This systematic review will quantify the effects of randomised evaluations of strategies to recruit rural participants to trials. Our findings will contribute to the evidence base to support trial teams to recruit a participant population that represents society as a whole, informing future research and playing a part to alleviate health inequalities between rural and urban populations.

Underrecording and underreporting of participant ethnicity in clinical trials is persistent and is a threat to inclusivity and generalizability.

OBJECTIVES: People from ethnic minority groups are underserved by randomized trials, and poor representation of these groups reduces generalizability of results. There is no guidance on which ethnicity categories are appropriate for use in trials and thus inconsistency exists. The purpose of this study is to establish, in a large sample of trials, if participant ethnicity is recorded, how it is obtained (categories used), and if its reporting varies from its recording. STUDY DESIGN AND SETTING: We reviewed trial documentation for 407 randomized controlled trials published in the UK National Institute of Health Research library from 2016 to 2021. We extracted data on the recording (if it was recorded and the categories used) and reporting (if the categories remained the same as those obtained, or not) of ethnicity for each trial along with demographics. In the analysis we categorized the manner of recording and reporting of ethnicity in the trials according to UK Census ethnicity categories. RESULTS: Ethnicity was recorded in 67.3% (n = 274) of trials. The location in the trial report where ethnicity was recorded was available for 42% (n = 116) of trials. The details on how ethnicity was collected (predefined categories or self-defined) was available for 54/274 (20%) of trials and details on the specifics of the categories recorded was available for 44 (16%) trials. Of the 44, 6 of those did not go on to report on ethnicity in the trial report. Of the remaining 38, only 13 reported ethnicity exactly as it had been recorded. Taken as a whole from the 407 trial reports examined 9.3% (38/407) of trials demonstrated exactly how they both recorded, and reported, ethnicity. Authors made reference to whom results were relevant in terms of ethnicity in 80/407 (19.7%). CONCLUSION: Ethnicity is underrecorded and underreported in clinical trials. This is a threat to the generalizability of the findings and needs to be improved.

Talent denied: Equity and excellence gaps in STEMM.

In principle, there could be STEMM talent everywhere if there were sufficient and adequate opportunities and learning resources everywhere. The reality, however, is that the likelihood of developing one's talent in STEMM is tied to membership in social groups. In this contribution, we explore the implications of this statement with multiple examples for different social groups and for different stages of talent development. We propose an educational framework model for analyzing equity gaps in STEMM talent development that identifies and systematizes the unequal and inequitable distribution of resources and opportunities as the proximal cause of the emergence of such equity gaps. Furthermore, we discuss important aspects for closing equity gaps in STEMM talent development. We argue that-similar to public health approaches-the focus in establishing equity in STEMM talent development should be on prevention rather than intervention. We discuss the importance of the cooperation of societal subsystems and argue for the use of adequate methods of disparity detection for creating equal opportunities. We also outline why preventive strategies are crucial for the creation of resource parity and explain why outcome standards should be considered obligatory.

Underserved groups remain underserved as eligibility criteria routinely exclude them from breast cancer trials.

OBJECTIVES: Under-served groups are populations unrepresented or disengaged from medical research or services despite a disproportionately high healthcare burden. Under-served groups may be directly (age, pregnancy as examples) or indirectly excluded (provision of written information in one language only as an example) from trial enrollment by strict eligibility exclusions. The purpose of our study was to assess eligibility criteria in published phase III breast cancer clinical trials to determine whether they excluded underserved groups either directly or indirectly. STUDY DESIGN AND SETTING: Medline was searched for phase III randomized controlled trials evaluating interventional drugs for breast cancer in high-impact journals published between January 1st, 2010 and December 31st, 2020. A total of 5133 eligible trials were returned, and 40 were selected, by simple randomization, for inclusion. RESULTS: All 40 trials had multiple exclusions that affected the recruitment of underserved groups. Clinical or scientific rationale for the recorded inclusion and exclusion criteria was underreported in 39 of 40 trials. CONCLUSION: Clinical trial eligibility criteria exclude underserved groups from breast cancer trials. Trialists should provide a justification for each eligibility criterion, and funders, reviewers, ethics committees, and others should demand one. Without this, underserved groups will remain just that: underserved.

Structural Racism and Supporting Black Lives - A Pharmacist's Vow amid COVID-19.

COVID-19 is disproportionately impacting Black communities in the United States due to racial structures that increase exposure (e.g., densely populated areas, substandard housing, overrepresentation in essential work) and promote underlying diseases that exacerbate COVID-19. This manuscript uses Oath of a Pharmacist as a framework to propose a set of best practices for pharmacists to mitigate inequities such as achieve competence in the ideology of structural racism; identify systems of power that jeopardize Black health; value Black voices; name the socio-structural determinants of health; define race as a socio-political construction; name historical and contemporary racism; apply resources equitably based on need; collect robust data to solve complex problems; diminish bias and view patients holistically in the contexts of inequities; and advocate for Black lives. While race is biological fiction, Black individuals are at an increased risk for COVID-19 cases, hospitalizations, and deaths than their white counterparts due to navigating generations of racist practices that often converge with other inequities-such as sexism, classism. To describe these racial health disparities, structured, racial disadvantage is commonly ignored while personal choices and clinical care are highlighted as the culprits. Achieving health equity requires comprehension, acceptance, and assessment of structural racism, and pharmacists are highly trusted, uniquely positioned healthcare professionals who, through their knowledge, skills, and resources, can help attenuate the effects of structural racism to support Black lives.

The pharmaceutical regulation of chronic disease among the U.S. urban poor: an ethnographic study of accountability.

The Massachusetts experience of health care reform before the Affordable Care Act of 2010 reveals a moral economy of care in which expanded access was met by neoliberal demands for accountability and cost control. Publicly-subsidized health insurance programs in the U.S. are deeply concerned with managing and regulating low-income residents' access to and coverage for medications. By focusing our attention on the new forms of social relations invoked by specific techniques of governing, analyses of accountability can help us understand the ways in which subjectivities are shaped through their encounters with overarching social and economic structures. This paper presents qualitative findings from a four-year, prospective study that combined two waves of survey and chart-based data collection with four qualitative methods. Medicaid patients are made accountable to their medication regimens as they must track their supply and obtain refills promptly; regular blood tests carried out by health care providers verify their adherence. Both patients and their physicians are subject to cost savings measures such as changing lists of covered medications. Finally, patients struggle to pay ever-increasing out-of-pocket costs for their medications, expenses which may keep patients from taking their medications as prescribed. The fraught relationship between trust, accountability and verification finds emphatic expression in the moral economy of health care, where the vulnerability of the sick and their hope for a cure confront policies designed to hold down costs.

What are successful recruitment and retention strategies for underserved populations? Examining physical activity interventions in primary care and community settings.

The purposes of this review are to (1) describe recruitment and retention strategies for physical activity interventions focusing on underserved populations and (2) identify successful strategies which show the most promise for "best practices" recommendations to guide future research. The method used was systematic review. Data on recruitment and retention strategies were abstracted and analyzed according to participant characteristics, types of strategies used, and effectiveness using an ecological framework. Thirty-eight studies were identified. Populations included African American (n = 25), Hispanic (n = 8), or Asian (n = 3) groups. Successful recruitment strategies consisted of partnering with respected community stakeholders and organizations, well-trained study staff ethnically, linguistically, and culturally matched to the population of interest, and use of multiple advertising channels. Successful retention strategies included efficient administrative tracking of participants, persistence, skillful teamwork, and demonstrating a positive, caring attitude towards participants. Promising recruitment and retention strategies correspond to all levels of ecological influence: individual, interpersonal, organizational, and societal.