Long COVID and Health Inequalities: What's Next for Research and Policy Advocacy?

INTRODUCTION: Organised by the 'Qualitative Long Covid Network', a workshop for qualitative Long COVID (LC) researchers, LC charity representatives and people with LC took place in June 2023, where research on the intersectional inequalities affecting LC prevalence, recognition and care was shared and discussed. METHODS: Five key themes were drawn up from presentations, discussions and reflections during the workshop, which are presented in this study. RESULTS: The following five themes are discussed: the unfairness of LC, difficulties in accessing care, mistrust of the healthcare system, a lack of understanding of LC and experiences of stigma and discrimination. Factors that widen or narrow inequalities related to LC were identified. CONCLUSION: A call to action is proposed to investigate and address inequalities through a robust LC research agenda that speaks with conviction to policy and decision-makers. We argue that there needs to be a strong investment in research and evidence-based policy and practice to mitigate the worst effects of the condition and address the inequalities in experience, treatment and support, which are experienced more often and more acutely by some of society's most vulnerable and disadvantaged individuals. PATIENT AND PUBLIC (PPI) CONTRIBUTION: Projects included in this article had PPI ongoing activity to inform their research. A member of the CONVALESCENCE PPI group presented at the QLC Network 'Long Covid and Health Inequalities' workshop, as did members of Long COVID Kids, Long COVID Support and Long COVID SOS charities. They were all invited to be co-authors of this article.

The OBS UK Dashboard: an interactive tool for representative trial site selection to facilitate equality and diversity in maternity research.

BACKGROUND: Obstetric Bleeding Study UK (OBS UK) (award ID: 152057) is a National Institute for Health and Care Research (NIHR)-funded stepped wedge cluster randomised controlled trial of a complex intervention for postpartum haemorrhage. This was developed in Wales and evaluated in a feasibility study, with improvements in maternal outcomes observed. Generalisability of the findings is limited by lack of control data and limited ethnic diversity in the Welsh obstetric patient population compared to the United Kingdom (UK): 94% of the Welsh population identifies as White, versus 82% in the UK. Non-White ethnicity and socioeconomic deprivation are linked to increased risk of adverse maternal outcomes. Traditionally, decisions regarding site selection are based on desire to complete trials on target in 'tried and tested' research active institutions. To ensure widespread applicability of the results and investigate the impact of ethnicity and social deprivation on trial outcomes, maternity units were recruited that represent the ethnic diversity and social deprivation profiles of the UK. METHOD: Using routinely collected, publicly available data, an interactive dashboard was developed that demonstrates the demographics of the population served by each maternity unit in the UK, to inform site recruitment. Data on births per year, ethnic and socioeconomic group of the population for each maternity unit, across the UK, were integrated into the dashboard. RESULTS: The dashboard demonstrates that OBS UK trial sites reflect the ethnic and socioeconomic diversity of the UK (study vs UK population ethnicity: White 79.2% vs 81.7%, Asian 10.5% vs 9.3%, Black 4.7% vs 4.0%, Mixed 2.5% vs 2.9%, Other 3.0% vs 2.1%) with variation in site demography, size and location. Missing data varied across sites and nations and is presented. CONCLUSION: The NIHR equality, diversity and inclusion strategy states studies must widen participation, facilitating individuals from all backgrounds to engage. The development of this novel interactive dashboard demonstrates an innovative way of achieving this. National Health Service (NHS) maternity researchers should consider using this tool to enhance diversity in research, address health disparities and improve generalisability of findings. This approach could be applied to healthcare settings beyond maternity care and across different global populations. TRIAL REGISTRATION: ISRCTN 17679951. Registered on August 30, 2023.

How women living with HIV in the UK manage infant-feeding decisions and vertical transmission risk - a qualitative study.

BACKGROUND: The World Health Organization (WHO) recommends that women with HIV breastfeed for a minimum of one year. In contrast, across high-income countries, HIV and infant-feeding guidelines recommend exclusive formula feeding if parents want to avoid all risk of postpartum transmission. However, recently these guidelines (including in the United Kingdom (UK)) increasingly state that individuals with HIV should be supported to breast/chest feed if they meet certain criteria; such as an undetectable maternal HIV viral load and consent to additional clinical monitoring. Between 600 and 800 pregnancies are reported annually in women with HIV in the UK, with low rates of vertical transmission (0.22%). Informed infant-feeding decision-making requires clinical support. Currently, little research addresses how individuals with HIV in high-income countries navigate infant-feeding decisions with their clinical teams and familial and social networks, and the resources needed to reach an informed decision. METHODS: Semi-structured remote interviews were conducted between April 2021 - January 2022 with UK-based individuals with a confirmed HIV diagnosis who were pregnant or one-year postpartum. Using purposive sampling, pregnant and postpartum participants were recruited through NHS HIV clinics, community-based organisations and snowballing. Data were analysed thematically and organised using NVivo 12. RESULTS: Of the 36 cisgender women interviewed, 28 were postpartum. The majority were of Black African descent (n = 22) and born outside the UK. The majority of postpartum women had chosen to formula feed. Women's decision-making regarding infant-feeding was determined by (1) information and support; (2) practicalities of implementing medical guidance; (3) social implications of infant-feeding decisions. CONCLUSION: The evolution of UK HIV and infant-feeding guidelines are not reflected in the experiences of women living with HIV. Clinicians' emphasis on reducing the risk of vertical transmission, without adequately considering personal, social and financial concerns, prevents women from making fully informed infant-feeding decisions. For some, seeking advice beyond their immediate clinical team was key to feeling empowered in their decision. The significant informational and support need among women with HIV around their infant-feeding options must be addressed. Furthermore, training for and communication by healthcare professionals supporting women with HIV is essential if women are to make fully informed decisions.

A manifesto for improving cancer detection: four key considerations when implementing innovations across the interface of primary and secondary care.

Improving cancer outcomes through innovative cancer detection initiatives in primary care is an international policy priority. There are unique implementation challenges to the roll-out and scale-up of different innovations, requiring synchronisation between national policy levers and local implementation strategies. We draw on implementation science to highlight key considerations when seeking to sustainably embed cancer detection initiatives within health systems and clinical practice. Points of action include considering the implications of change on the current configuration of responsibility for detecting cancer; investing in understanding how to adapt systems to support innovations; developing strategies to address inequity when planning innovation implementation; and anticipating and making efforts to mitigate the unintended consequences of innovation. We draw on examples of contemporary cancer detection issues to illustrate how to apply these recommendations to practice.

Assessing the heterogeneity of ethnic categories for patient records in primary care.

BACKGROUND: UK general practice surgeries collect data regarding patient ethnicities, typically at registration. These data are subsequently used in both clinical care and research, for example, when embedded in risk modelling tools. The published standard list of ethnic categories exists, but little is known about what happens in frontline practice. AIM: To document the variation in ethnic categories available on online patient registration forms across GP surgeries in Oxfordshire. METHOD: Of all 67 GP surgeries in Oxfordshire, 56 had online registration forms that included an option list for ethnicity reporting. The authors compared these against the 2001, 2011, and 2021 UK census ethnic group categorisation. RESULTS: Significant heterogeneity was identified across practices. The number of options for ethnicity group ranged from 5 to 84, with a median of 14, compared to the census lists that comprise of 19 (2021), 18 (2011), and 16 (2001) groups. Of the 56 practices, six used the 2001 census list, five used the 2011 census list, and none used the 2021 census list. Overall, 45 practices used lists that differed from any census list, including categories not typically considered to be ethnic, for example 'Muslim' or 'Buddhist', meaning individuals could potentially identify with multiple options. CONCLUSION: High-quality research and healthcare data that includes patient ethnicity is essential to understand, document, and mitigate against health inequalities. However, this may be compromised by poorly conceived ethnic categorisations and a lack of standardisation. This pilot/exploratory study suggests that the ethnicity records in primary health care may be neither standardised nor meaningful.

A lack of sociodemographic participant diversity in endometriosis evidence risks unrepresentative clinical guidance: a structured review of the evidence contributing to a NICE guideline.

BACKGROUND: Women who are black are less likely to be diagnosed with endometriosis than white women. There is no confirmed biological basis, so this likely represents structural barriers around health care. There is a lack of evidence exploring the interface between ethnicity and symptoms or experience of care and treatment. AIM: To map recording of sociodemographic diversity in the evidence informing an endometriosis guideline. METHOD: Inclusion of study setting, ethnicity, age, and socioeconomic status was documented within the evidence cited in National Institute for Health and Care Excellence (NICE) NG73 (2017) Endometriosis diagnosis and management. Included were 44 studies with 43 sample groups from the chapters: 'Signs and Symptoms', 'Information and Support', and 'Diagnosis'. Data were extracted independently by two researchers. RESULTS: No studies were conducted in primary care. The evidence cited in 'Signs and Symptoms' and 'Diagnosis' was exclusively from tertiary care. 'Information and Support' included 9/16 studies from tertiary care, and 7/16 recruited through community and advocacy networks. For ethnicity, 4/44 studies formally reported participant ethnicity (three from 'Information and Support', one from 'Diagnosis'). In these, 93%, 90%, 60%, and 75% of participants were white/Caucasian (mean 79.5%). For age, 3/44 studies included adolescents. Many studies excluded women who were deemed outside reproductive age. For socioeconomic status, eight studies, all from 'Information and Support', reported socioeconomic status in some form. The majority of participants were tertiary educated. CONCLUSION: These results highlight the missing demographics within evidence cited in a national guideline for endometriosis. These align with documented inequities in diagnosis of endometriosis and warrant urgent attention.

Negotiating un/sanitary citizenship: the reception of UK government COVID-19 public health messaging by racialised people highly exposed to infection.

Governments across the world differently invoked citizen responsibility for responding to the risk of COVID-19 infection. Approaches which focused on changing social practices served to reinforce distinctions between 'sanitary' and 'unsanitary' citizenship. This paper examines citizens' responses to public health policy messaging, exploring as a case study the reception of UK Government messaging about responsible behaviour during the first two years of the COVID-19 pandemic. We examine the public responses to such messaging from narrative interviews with 43 people who became ill with COVID-19. These interviews were with people who identified as members of the minoritised religious and racialised groups, who were most heavily burdened by the impact of COVID-19. Interviewees challenged assumptions that they were 'irresponsible' for having caught COVID-19, and instead directed attention towards the ways in which pandemic guidance was unworkable. Some actively critiqued government messaging, questioning the problematic racialisation of pandemic messaging and challenging individual responsibilisation for the management of the pandemic. Through this analysis we demonstrate the active role of citizens in enacting, and at times resisting, health policy.

"We decided together": a qualitative study about women with HIV navigating infant-feeding decisions with the father of their children.

BACKGROUND: The World Health Organization (WHO) recommends that women with HIV breastfeed for a minimum of one year. In contrast, United Kingdom (UK) guidelines encourage formula feeding, but breastfeeding can be supported under certain circumstances. Infant-feeding decisions often involve personal and social networks. Currently, little research addresses how individuals with HIV in high-income countries navigate infant-feeding decisions with the father of their children. METHODS: Semi-structured remote interviews were conducted with UK-based individuals with a confirmed HIV positive diagnosis who were pregnant or one-year postpartum, and two partners. Using purposive sampling, pregnant and postpartum participants were recruited through HIV NHS clinics and community-based organisations, and where possible, fathers were recruited via them. Data were analysed using thematic analysis and organised using NVivo 12. RESULTS: Of the 36 women interviewed, 28 were postpartum. The majority were of Black African descent (n = 22) and born outside the UK. The key factors in women navigating HIV and infant-feeding discussions with respect to their baby's father were the latter's: (1) awareness of woman's HIV status; (2) relationship with the woman; (3) confidence in infant-feeding decision; (4) support and opinion about woman's infant-feeding intentions. Most women made a joint decision with biological fathers when in a long-term (> one year) relationship with them. Single women tended not to discuss their infant-feeding decision with the father of their child, often for safety reasons. CONCLUSION: Women in ongoing relationships with the father of their child valued their support and opinions regarding infant-feeding. In contrast, single women chose not to involve the father for reasons of privacy and safety. Clinical teams and community-based organisations should support mothers in discussing infant-feeding decisions regardless of relationship status. When appropriate, they should also support discussions with their partners, but remain sensitive to circumstances where this may put women at risk.

Talking about inequities: A comparative analysis of COVID-19 narratives in the UK, US, and Brazil.

Disproportionate mortality and morbidity burdens of the COVID-19 pandemic and coinciding media coverage of public acts of violence perpetrated against people of color in 2020 precipitated reckonings with structural inequities in global, national, and local contexts. This cross-country comparative analysis aims to describe how people voice and make sense race, racism, and privilege in their experiences with COVID-19 infection in the United States, United Kingdom, and Brazil. Anchored by continuous reflection on our individual and collective positionality, we conducted an inductive comparative analysis conceptually situated in intersectionality and critical race theory. Countries used a shared qualitative methodology to collect and analyze 166 narratives of people with experience of COVID-19 infection from 2020 to 2023. We selected 19 cases that illustrate cross-national differences in peoples' acknowledgment and narration of structural privilege and disadvantage in their observations of COVID-19 in their countries and in their personal experiences. People in the US had the most fluency with voicing race directly. In Brazil, while some respondents (especially younger people) demonstrated high racial consciousness, others struggled to identify and talk about racial relationships. In the UK, people voiced racial identifications, though often within white norms of politeness and an accompanying sense of discomfort. The findings overall illustrate moments the interview becomes or does not become a space for voicing social categories and systemic underpinnings of difference in COVID-19 infections and healthcare experiences. We reflect on cross-country differences in historical and contemporary racialized discourse and elaborate on implications of focusing on voicing in qualitative research.

Towards an Integrated Blood Pressure Self-Monitoring SolutIoN for Stroke/TIA in Ireland: a mixed methods feasibility study for the TASMIN5S IRL randomised controlled trial.

BACKGROUND: Optimising Blood Pressure (BP) control is one of the most important modifiable risk factors in preventing subsequent stroke where the risk increases by one-third for every 10 mmHg rise in systolic BP. The aim of this study was to evaluate the feasibility and effects of BP self-monitoring in patients with a previous stroke or TIA in Ireland. METHODS: Patients with a history of stroke or TIA and sub-optimal BP control were identified from practice electronic medical records and invited to take part in the pilot study. Those with systolic BP >130 mmHg were randomised to a self-monitoring or usual care group. Self-monitoring involved monitoring BP twice a day for 3 days within a 7-day period every month, following text message reminders. Patients sent their BP readings by free-text to a digital platform. The monthly average BP was sent to the patient (traffic light system) and to the patient's GP after each monitoring period. Treatment escalation was subsequently agreed by the patient and GP. RESULTS: Of those identified, 47% (32/68) attended for assessment. Of those assessed, 15 were eligible for recruitment and were consented and randomised to the intervention or control group on a 2:1 basis. Of those randomised, 93% (14/15) completed the study with no adverse events. Systolic BP was lower in the intervention group at 12 weeks. CONCLUSIONS: TASMIN5S, an integrated blood pressure self-monitoring intervention in patients with a previous stroke or TIA, is feasible and safe to deliver in primary care. A pre-agreed three step medication titration plan was easily implemented, increased patient involvement in their care, and had no adverse effects.

Black, Asian and minority ethnic women's experiences of maternity services in the UK: A qualitative evidence synthesis.

AIMS: Black, Asian and minority ethnic women are at higher risk of dying during pregnancy, childbirth and postnatally and of experiencing premature birth, stillbirth or neonatal death compared with their White counterparts. Discrimination against women from ethnic minorities is known to negatively impact women's ability to speak up, be heard and their experiences of care. This evidence synthesis analysed Black, Asian and minority ethnic women's experiences of UK maternity services in light of these outcomes. DESIGN: We conducted a systematic review and qualitative evidence synthesis using the method of Thomas and Harden. DATA SOURCES: A comprehensive search in AMED, Cinahl, Embase, Medline, PubMed and PsycINFO, alongside research reports from UK maternity charities, was undertaken from 2000 until May 2021. Eligible studies included qualitative research about antenatal, intrapartum and postnatal care, with ethnic minority women in maternity settings of the UK NHS. REVIEW METHODS: Study quality was graded using the Critical Appraisal Skills Programme tool. RESULTS: Twenty-four studies met the inclusion criteria. Our synthesis highlights how discriminatory practices and communication failures in UK NHS maternity services are failing ethnic minority women. CONCLUSION: This synthesis finds evidence of mistreatment and poor care for ethnic minority women in the UK maternity system that may contribute to the poor outcomes reported by MBRRACE. Woman-centred midwifery care is reported as positive for all women but is often experienced as an exception by ethnic minority women in the technocratic birthing system. IMPACT: Ethnic minority women report positive experiences when in receipt of woman-centred midwifery care. Woman-centred midwifery care is often the exception in the overstretched technocratic UK birthing system. Mistreatment and poor care reported by many ethnic minority women in the UK could inform the inequalities of outcomes identified in the MBRRACE report.

What would it take to meaningfully attend to ethnicity and race in health research? Learning from a trial intervention development study.

The lack of ethnic diversity in health research participation is a multi-dimensional problem. Racism and intersectional disadvantage compel us to use racial and ethnic categories to explore health, but race theorists warn that these can be essentialising and pathologising. Yet, the alternative, the pursuit of colour-blindness, can render the impact of race and ethnicity on health invisible. This paper describes the attempt to recruit an ethnically diverse sample to inform the development of an intervention for stroke patients. The study revealed deep uncertainties and tensions, which we use to re-examine our own positionalities and perspectives. We focus on the experiences of researchers and participants to show how 'usual' research practices are unwittingly exclusionary and promote 'methodological whiteness' (The British Journal of Sociology, 2017, 68, S214). Calls for greater diversity in research are frequently made, yet health research remains tainted by the use of problematic epistemological starting points, rendering participation by minoritised people uneasy. Medical sociologists, especially those engaged in clinical trials, have a vital role to play in recalibrating health research to attend to ethnicity and race. This requires us to reflect on our practices, to recognise where we are complicit in replicating social inequalities and to actively engage with communities to produce more inclusive research.

Health inequalities, ethnic minorities and COVID19: interactive theatre workshop drawing on a qualitative interview study.

BACKGROUND: The COVID19 pandemic revealed and deepened existing inequalities. These were exacerbated by institutional and interpersonal racism and poorly conceived public health messaging. As a result, people from minority ethnic backgrounds in the UK were disproportionately affected. We conducted a creative interdisciplinary session to support interactive reflection and discussion on these inequalities between the actors and the audience, who was comprised of public health scientists and NHS practitioners, to come up with practical ways to address ethnicity-based health inequalities going forward. METHODS: We prepared a 45 min interactive scenario drawing on forum theatre approaches, which are based on the Theatre of the Oppressed: a set of dramatical techniques created by Augusto Boal. To understand what to include the interactive scenario we carried out a workshop built on a narrative interview study with 70 adults who had Covid between March, 2020, and November, 2021. We adopted a maximum variation sampling strategy focusing on people from minority ethnic backgrounds (45 of total sample). Interviews were done remotely and recorded via video or audio. Study participants were invited to tell their story in their own words, alongside semi-structured prompting. After thematic analysis, the research team worked with theatre practitioners from the Performing Medicine company to create scenarios from verbatim interview content. The format allows audience members to watch scenarios and interact directly with actors, giving advice on how to improve the situation. The study was approved by Berkshire Ethics Committee. Informed verbal and written consent were obtained from all participants. FINDINGS: Five themes from analysis explored in the workshop emerged: (1) existing racialised disadvantages that impacted COVID-19 exposure: employment, housing, and caring responsibilities; (2) unequal access to care, welfare, and support; (3) fears about the health-care system regarding quality of care and vaccine safety; (4) perceptions that the media and public health messaging blamed minority ethnic groups for spreading infection; and (5) increases in acts of direct racism. These informed the development of a 45-minute interactive scenario, which will be performed at the 10th UK Public Health Science conference. INTERPRETATION: There is an urgent need to re-evaluate public health messaging and care for people from minority ethnic backgrounds. This theatre workshop will support reflection to refine workshop content for further dissemination. FUNDING: UK Economic and Social Research Council.

Improving access of young adults with experience of homelessness to primary care dental services in the UK: A realist synthesis.

OBJECTIVE: To understand why, how and under what circumstances interventions lead to improved access of young adults with experience of homelessness (YAEH) to primary care dental services in the UK. METHODS: We followed a realist, theory-driven methodology. It involved locating existing theories, searching for evidence, document selection, data extraction/appraisal and evidence synthesis. We searched scientific databases and grey literature sources. We used these data and relevant substantive theories to develop explanations of how, why and under what circumstances interventions lead to desired outcomes. We presented these explanations in the form of context-mechanism-outcome configurations (CMOCs). The CMOCs were incorporated in an overarching programme theory, which was iteratively developed and refined throughout the realist synthesis. RESULTS: We used 106 scientific and 18 grey literature records to synthesize 61 CMOCs. Our revised programme theory highlights the importance of four main considerations: 'preparing a service', 'producing and disseminating information', 'outreach activities' and 'facilitating interactions'. When designing dental programmes for YAEH, we recommend considering the importance of prior service planning (including resourcing of emergency dental care, training staff and incorporating safety measures), creating positive experiences, flexibility, patient-centeredness, being informative and reassuring, creating an enabling environment (including strong communication, building rapport and avoiding negative judgements), having realistic expectations and designing services that empower patients. CONCLUSIONS: Improving dental access of YAEH requires attention to multiple levels. Services can achieve positive outcomes by understanding the complexity of YAEH lives, and creating contextual circumstances that encourage their attendance.

Shifting research culture to address the mismatch between where trials recruit and where populations with the most disease live: a qualitative study.

BACKGROUND: Research participation is beneficial to patients, clinicians and healthcare services. There is currently poor alignment between UK clinical research activity and local prevalence of disease. The National Institute of Health Research is keen to encourage chief investigators (CIs) to base their research activity in areas of high patient need, to support equity, efficiency and capacity building. We explored how CIs choose sites for their trials and suggest ways to encourage them to recruit from areas with the heaviest burden of disease. METHODS: Qualitative, semi-structured telephone interviews with a purposive sample of 30 CIs of ongoing or recently completed multi-centre trials, all of which were funded by the UK National Institute of Health Research. RESULTS: CIs want to deliver world-class trials to time and budget. Approaching newer, less research-active sites appears risky, potentially compromising trial success. CIs fear that funders may close the trial if recruitment (or retention) is low, with potential damage to their research reputation. We consider what might support a shift in CI behaviour. The availability of 'heat maps' showing the disparity between disease prevalence and current research activity will help to inform site selection. Embedded qualitative research during trial set up and early, appropriate patient and public involvement and engagement can provide useful insights for a more nuanced and inclusive approach to recruitment. Public sector funders could request more granularity in recruitment reports and incentivise research activity in areas of greater patient need. Accounts from the few CIs who had 'broken the mould' suggest that nurturing new sites can be very successful in terms of efficient recruitment and retention. CONCLUSION: While improvements in equity and capacity building certainly matter to CIs, most are primarily motivated by their commitment to delivering successful trials. Highlighting the benefits to trial delivery is therefore likely to be the best way to encourage CIs to focus their research activity in areas of greatest need.

Optimizing a digital intervention for managing blood pressure in stroke patients using a diverse sample: Integrating the person-based approach and patient and public involvement.

BACKGROUND: Having a stroke or transient ischaemic attack increases the risk of a subsequent one, especially with high blood pressure (BP). Home-based BP management can be effective at maintaining optimal BP. OBJECTIVE: To describe the optimization of a digital intervention for stroke patients and the value of participant diversity, using the person-based approach (PBA) and integral patient and public involvement (PPI). SETTING AND PARTICIPANTS: Stroke patients recruited from primary care and community settings, and health-care professionals in primary care, in England and Ireland. DESIGN: Three linked qualitative studies conducted iteratively to develop an intervention using the PBA, with integral PPI. INTERVENTION: The BP: Together intervention, adapted from existing BP self-monitoring interventions, is delivered via mobile phone or web interface to support self-monitoring of BP at home. It alerts patients and their clinicians when a change in antihypertensive medication is needed. FINDINGS: Feedback from a diverse range of participants identified potential barriers, which were addressed to improve the intervention accessibility, feasibility and persuasiveness. Easy-to-read materials were developed to improve usability for patients with aphasia and lower literacy. The importance of including family members who support patient care was also highlighted. Feedback messages regarding medication change were refined to ensure usefulness for patients and clinicians. DISCUSSION: Input from PPI alongside qualitative research with a diverse study sample allowed the creation of a simple and equitable BP management intervention for stroke patients. PATIENT INVOLVEMENT: Two PPI co-investigators contributed to design, conduct of study, data interpretation and manuscript preparation; community PPI sessions informed early planning. Study participants were stroke patients and family members.