Report of themes from community consultations on a pilot Race Equality Framework for health and care research organisations

NIHR Race Equality Public Action Group,Sandra Richards,Adam Kamenetzky,Sarah Knowles

doi:10.3310/nihropenres.1115191.1

Abstract

“You’ve ignored our needs...  ...but now you need our involvement.” Report of themes from community consultations on a pilot Race Equality Framework for health and care research organisations. Contents Executive summary Setting the scene for NIHR’s Race Equality Framework Introduction to the Report and its approach  |  a plea to reflect and act What we did  |  retaining authenticity in what was said, heard, reviewed, and done What we found  |  themes from community consultation events     Theme 1  |  Harm, betrayal, recognition, repair     Theme 2  |  Inequity, loss of value, partnership, shared value     Theme 3  |  Stereotyping, lack of diversity, misdiagnosis, respecting difference     Theme 4  |  Tickboxing, consultation fatigue, Eurocentrism What happens next  |  reflection, inclusive engagement, shared learning, action Annex 1  |  how we met the UK standards for public involvement Authors Dr Sarah Knowles  |  University of York SisDr Sandra Richards  |  Public Contributor Adam Kamenetzky  |  NIHR Coordinating Centre for and on behalf of NIHR’s Race Equality Public Action Group (repag_enquiries@nihr.ac.uk)  Keywords Racial equality, antiracism, race, inequality, diversity, inclusion, health, care, research, community, involvement, engagement, public partnerships, NIHR Executive summary The National Institute for Health and Care Research (NIHR) is committed to actively and openly supporting and promoting equality, diversity and inclusion. A core part of this commitment is to improve opportunities for under-served and unheard communities to be involved in and engage with health and care research. This Report forms part of the activities of NIHR’s Race Equality Public Action Group to develop a Race Equality Framework for Public Involvement in Research, as a means to strengthen racial and cultural competencies, encourage allyship, and reduce the barriers to equitable inclusion of diverse patient and public communities across the health and care research system. The Report captures the authentic voices and views of the Black African, Asian and Caribbean heritage community members who participated in three consultation events held in May and June 2021, which informed and shaped the co-design of the Race Equality Framework. It presents themes representing complex and deep-rooted institutional, societal and human issues. The Report, and the themes and voices presented within it, knowingly and deliberately ‘draw a straight line to the truth’, to communicate community members’ collective experiences and their expert insights. NIHR recognises that its content may make some readers feel uncomfortable or even distressed. Nonetheless, readers are encouraged to give themselves the time and space to engage with its content, and stop, listen and think before contemplating action. This action may appropriately focus around - and we would encourage - engagement with and adoption of NIHR’s Race Equality Framework, as a self-assessment tool to help organisations improve racial equality in public involvement in health and care research. Or, action may take other forms. Regardless, we hope that the Report’s content provides both a catalyst for and evidence to support constructive conversations and further activities that champion the voices of the under-served and the unheard. These issues need to be addressed by any individuals and organisations seeking to improve their racial competency, allyship and collaboration, and who seek to address the injustices these individuals and communities face. Setting the scene for NIHR’s Race Equality Framework Diverse and inclusive public involvement is essential if research is to be relevant and provide better health outcomes for all. Patient and public involvement has been a cornerstone of the National Institute for Health and Care Research (NIHR) since it was established in 2006. In this pivotal era, in which a spotlight has been shone on the real-world effects of health inequalities linked to race and ethnicity in the UK, collectively we aim to move closer to meeting our <a href="https://sites.google.com/nihr.ac.uk/pi-standards/standards/inclusive-opportunities">Inclusive Opportunities Standard</a>: a standard that requires research to be ‘informed by a diversity of public experience and insight’ so that it leads to treatments and services that reflect the needs of everyone. Evidence shows us that ethnicity and race systematically influence <a href="https://www.nhsrho.org/publications/ethnic-health-inequalities-in-the-uk/">health outcomes</a>, and <a href="https://www.ethnicity-facts-figures.service.gov.uk/">socio-economic status</a>. Racial inequity continues to damage the lives and health of people who are from Black African, Asian and Caribbean heritage communities; the same communities have been <a href="https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/892376/COVID_stakeholder_engagement_synthesis_beyond_the_data.pdf">disproportionately harmed by COVID-19</a>.  Efforts to recruit a diverse range of public contributors, too few of the patients and public members who work with NIHR are Black African, Asian and African Caribbean heritage people. NIHR Centre for Engagement and Dissemination (CED) recognised that these communities needed to have a stronger presence, voice and influence in shaping the health and care research agenda. Complementing work being overseen by the NIHR’s Head of Equality, Diversity and Inclusion, the Race Equality Public Action Group (REPAG) has focused on actions that relate directly to public and patient involvement and engagement. REPAG is an expert advisory group comprising public contributors, senior NIHR staff and members of the health and academic community. The Race Equality Framework is a key part of REPAG’s response to the inequities these communities experience. The Race Equality Framework is a self-assessment tool designed to help organisations improve racial equity in public involvement in health and care research. This Framework has been designed to serve as a guide for constructive conversations in research organisations, to put in place the building blocks for meaningful change through sustained effort and commitment.  Echoing REPAG’s role in championing the voices of the under-served and the unheard, and co-production as a cornerstone of REPAG’s ethos and values, three community consultation events took place from May to June 2021 to seek the views of Black African, Asian and African Caribbean heritage individuals on the Race Equality Framework. This report is a synthesis of their experiences and views on how to reduce barriers to health and care research for these communities.  From August to December 2021, sixteen organisations were trialling the Race Equality Framework to assess how their current policies, practices and organisational culture could be changed to better serve diverse communities, foster improved race relations and ultimately improve healthcare delivery. This pilot is ahead of a wider rollout of the final Framework in Spring 2022, which all research organisations will be encouraged to adopt. We encourage all communities involved in health and care research to read and reflect on the content of this Report, which surfaces the lived experiences that led to the co-production of the NIHR’s Race Equality Framework and - we hope - will encourage everyone to consider how they can act to improve racial and cultural competencies. Introduction to the Report and its approach: a plea to reflect and act Our activities as authors of this Report form part of a groundbreaking initiative to improve the cultural competencies of researchers and research organisations, informed by a diversity of public experience and insight, and provide better outcomes for all, as part of the development of a Race Equality Framework for public involvement in health and social care research. This Report has sought to capture and preserve the authentic voices and views of Black African, Asian and Caribbean heritage community members who participated in three consultation events held in May and June 2021 (hereafter, ‘participants’).  The messages captured within this Report reflect people’s lived experiences as revealed in those discussions. These lived experiences resonate with the legacy of negative societal interactions, which have resulted in the research enterprise being flawed in many instances and tarnished by documented instances of racial injustices. We have derived themes through a rigorous process that is consistent with qualitative research methodology and grounded in <a href="https://sites.google.com/nihr.ac.uk/pi-standards/standards?authuser=0">best practice standards for public involvement</a>, to ensure that participants were rightly afforded ethical and respectful engagement. The themes are fundamentally linked and represent complex and deep-rooted institutional, societal and human issues. We urge readers to consider the issues reported as a whole, taking into account the wider contexts within which they are reported.  Engaging meaningfully with the findings of this Report may make some readers feel uncomfortable or even distressed. This may be because the Report seeks to ‘draw a straight line to the truth’ (in the words of one of the participants), to communicate participants’ collective truths and their expert insights. Participants’ voices articulate the need for this engagement to take place not as a punitive objective, but instead as recognition that there are underlying, unresolved issues affecting this population. Until these issues are addressed, they will continue to hamper necessary and progressive adjustments that are in alignment with the philosophy of equal human rights and universal access to health and social care.  This Report is not based on a premise of false evidence appearing real (F.E.A.R.); indeed the methodology employed in this process has ensured that the voices and associated meanings have not been lost. The themes do not show merely perceptions or anticipated anxieties, but reflect the individual and collective direct experiences of real problems. We recognise through the sharing of lived experiences and documented evidence of historical events, what exists now is a strong sense of betrayal, injustice and inequity based on a series of documented events. As a result there is trauma we all have to work to heal, and relationships and trust that need to be repaired. We therefore once again urge readers to please stop, listen, think and begin to contemplate the required actions in a meaningful way so you can contribute in a significant way to eliminating or at the very least lessening the inequalities that systematically impact these communities. In so doing, we individually and collectively reduce the barriers to accessing adequately the health and social care that all people are entitled to. We share this depth and breadth of feeling and expertise with the wider community and as NIHR and partner research organisations pilot the Race Equality Framework as the primary route to improve race equity in public involvement in research. We hope the Report will inform, educate and help those with an interest in the health and wellbeing of all communities, to improve racial competencies, allyship and collaborations. We invite you to connect with, reflect, and act on the realities of the community participants who have generously shared their lived experiences. The Report is presented in the following structure: What we did  |  REPAG’s process to retain authenticity in what was said, heard, reviewed and done throughout the community consultation events and the analysis underpinning this Report. What we found  |  Authors’ report of the themes that represent the key points communicated and subsequently reviewed by participants in the community consultation events. What happens next  |  REPAG’s commitments to further work, and reflections on the learning to share with the wider research community, to encourage inclusive action.  What we did: retaining authenticity in what was said, heard, reviewed, and done In this section we describe the methods REPAG used to gather feedback, and what the authors did with that feedback to produce the Report. Stage 1: How was feedback gathered?  |  describes the community consultation events that took place, and how these were run by REPAG. Stage 2: What did we do with the feedback?  |  describes how the authors of this Report (SK, SR and AK) dealt with feedback, which was a collective and inclusive process that checked back with participants in the consultation events.  We followed a model of ‘Said: Heard: Reviewed: Did’ (detailed below) developed during the early conceptualising of the process. This model is a departure from the typical research data collection and analysis approach. What the model requires is an engaged and inclusive approach which involves returning to the participants who gave voice to their experiences, to verify these ‘data’ and emerging themes; in so doing misguided researcher interpretations are avoided. This approach also means the process of creating themes is shared, jointly understood and endorsed and we approach this as work which is about sharing understanding - what has been shared with us (the authors), and how do we share what we have learned? With this model, the authenticity of the voice is preserved.  Stage 1: How was feedback gathered? REPAG sought to capture community members’ views on their participation in health and care research, the challenges facing Black African, Asian and Caribbean heritage people, and their views on the pilot Race Equality Framework, by conducting three consultation events.  How were community members reached? REPAG asked members of Black African, Asian and Caribbean heritage communities to share invitations through their own professional and personal networks. Information was tailored for professional networks, for patient and public groups, and for individual outreach (via WhatsApp).  How was the event described? The NIHR’s Race Equality Public Action Group (REPAG) brings together members of the public and research professionals to take action on race equity in health and care research. The group has developed a Race Equality Framework to support research teams in promoting race equality. REPAG is holding three community consultation events where we are inviting Black African, Asian and Caribbean heritage individuals aged over 18, living in the UK to come along and share their experiences and views to help us shape the Race Equality Framework and reduce barriers to research for these communities.  How were the events made accessible?  In recognition of the time involved, contributors were reimbursed £50 for their time. They could opt to receive this into a bank account, as a voucher, or make a donation to an organisation. REPAG asked those invited to contact the team directly about any accessibility issues, so they could make individual arrangements to suit their needs. One attendee reported a visual impairment and asked to have a one-to-one call prior to the event to talk through the written material that was provided. Two attendees requested visual information in large font. REPAG held the consultations in the evening so that attendees were not expected to miss work. While the online events may have limited access for those who struggle with digital access, it opened up accessibility to those that would have faced geographical limitations requiring attendees to travel.  How were the events run? All the events were run online via Zoom.  Recognising that these events focused on sensitive and challenging topics, REPAG ensured that a counsellor was present in each consultation Zoom meeting.  The counsellor provided their mobile number at the beginning of the event so that anyone who wished to could contact them directly.  Each session began with a brief introduction to NIHR and to the work of REPAG. The co-Chairs described REPAG’s ethos and working contract, and Zoom protocols for the event, to clearly communicate why the attendees were being asked to contribute, how attendees would work together during the event, and how their feedback would be acted upon.  The Facilitators observed after the first session that attendees tended to view them or refer to them as representatives of NIHR. While this was true to an extent, Facilitators wanted to better acknowledge that they and REPAG’s co-Chairs were members of the community and had themselves experienced the impact of racial inequality. For the remaining two sessions, the co-Chairs took extra time at the beginning of the event to discuss their shared experiences, and to express to the attendees that they were among people who understood them.  Each event was supported by:      •    REPAG co-Chairs, Royston John and Fay Scott.     •    Event Facilitators: four external Facilitators, two REPAG members, and one NIHR Facilitator were recruited. All Facilitators were of Black African, Asian and Caribbean heritage. Their role was to enable focused discussion in the break-out rooms and report back in the main session.      •    Main note-takers: four main note-takers from the NIHR attended. All main note-takers were also of Black African, Asian and Caribbean heritage. They were also present in the break-out rooms to support the relevant Facilitator. They captured the discussion live on google jamboards, enabling attendees to see what was being recorded. They also took notes throughout the session.      •    Note-takers: additional note-takers were members of REPAG including the authors of this Report (SK, SR and AK). Only one of the note-takers (SR) is of Black British,  African Caribbean heritage. Note-takers were present in the main session and each present in one of the breakout rooms to provide additional recording of the discussion. The sessions were not audio-recorded, and instead written notes were taken. Attendees were informed that the note-takers were present so they were fully aware of who was involved. After the initial introduction, note-takers were asked to turn off their cameras and not contribute directly to the session. This was in recognition that the event was not an academic or research space to contribute to, but a space for public attendees of Black African, Asian and Caribbean heritage. Prior to the meeting the note-takers had been instructed to suspend their own interpretation of what was being said, listen and note the matters raised by the community in a way that was as verbatim as possible. All the written notes from both the main and supporting note-takers were provided to the event attendees within four days of each consultation event (see ‘Said: Heard: Reviewed: Did’ model, described below). What were participants asked to talk about? The events were split into two halves. Firstly, participants were asked for general reflections about health and care research. Secondly, participants were asked for specific reflections on the draft Race Equality Framework.  In this Report, we focus on the general reflections provided, which give us insight into perceptions of health and care research more broadly, and have wider relevance across the academic community. The specific feedback about the Framework was reviewed and acted upon by the Race Equality Framework development team. A similar inclusive process of engagement with participants was undertaken to check and respond to this specific feedback, with participants provided with a rationale for which aspects of their feedback were included (or not included, in the very few cases where these were out of the framework’s scope) in future iterations of the Race Equality Framework. In the events, attendees were asked the following general reflection questions:     1.    What would encourage you to participate in health and care research?     2.    What health challenges do you believe are currently facing Black African, Asian and Caribbean heritage people?     3.    What do you think needs to be done to address at least one of the areas above? Who attended the events? General Data Protection Regulation rules and our lack of a secure data repository for registered applicants informed the decision not to gather detailed demographic information. However, all participants were of Black African, Asian or Caribbean heritage. The first event was specifically for Black African or Caribbean heritage men (including those of mixed heritage), who REPAG had identified as particularly under-represented in research and as a focus for the first year of REPAG activity.   A total of 59 participants were involved. The participants  were asked to report if they had been involved with NIHR previously, and to rate their knowledge of health and care research. The majority (82%), had not worked with the NIHR previously, 71% rated themselves as either having limited (34%) or some (37%) knowledge of health and care research. This indicates that the events succeeded in recruiting potentially new contributors rather than being limited to consulting with those who were already aware of, or contributing to, NIHR activities. REPAG carried out a degree of vetting to ensure that only participants meeting the heritage criteria of the groups we sought to hear from were included in the events.  Event Attendees Consultation Event #1 May 2021 20 men of Black African and Caribbean heritage Consultation Event #2 June 2021 5 men and 15 women of Black African, Asian and Caribbean heritage  Consultation Event #3 June 2021 3 men and 16 women of Black African, Asian and Caribbean heritage  Stage 2: What did we do with the feedback? We agreed at the beginning of the process of planning the thematic review underpinning this Report that we wanted to be guided by three principles:     1.    Authenticity: We wanted to ensure the analysis was rooted in the original meaning of the attendees to avoid inaccurate interpretations. So, notes taken during the events were sent to the attendees in their raw form (without any editing or revision) to enable attendees to check what we had captured and to provide edits if they wished. We agreed that the final themes should be written, as much as possible, in the language used by the attendees. We did not begin analysis until after all the events were completed. We wanted to remain open minded to what was being expressed in each event, without beginning to layer our own understanding over them. In this way, each event was treated as unique and provided discrete data.     2.    Transparency: We wanted to acknowledge our own role in the analysis, and particularly recognise that typical academic analyses can be hidden from the participants. We therefore introduced a participatory stage to the process, where developing themes were shared with the attendees and we invited them to add, edit or revise our early understanding.     3.    Collaboration: To ensure authenticity and transparency, our process was therefore critically collaborative with the attendees. Attendees had the opportunity at two stages (after the notes were collated, and after themes were produced) to edit or add to the analysis, and to challenge our recording or interpretation.  The ‘Said: Heard: Reviewed: Did’ model  We achieved the intended authenticity, transparency and collaboration aspects through a four-stage approach referred to earlier as the ‘Said: Heard: Reviewed: Did’ model. This approach recognises that seeking and achieving understanding between researchers and participants in research is an ongoing interactive process that occurs between us.  The analysis team consisted of SK (White British woman), AK (White British man) and SR (Black British woman of African Caribbean heritage). The team held five reflective meetings between July and August 2021 to work through the feedback and create summary themes. The aim of the themes was for them to be:     •    Comprehensive: they would, between them, address all the issues raised across the three workshops.     •    Communicative: they would communicate the key issues raised, succinctly but without losing complexity, to audiences of the Report who had not attended the events themselves. The analysis team each brought different lenses to the analysis process, based both on cultural as well as professional backgrounds. Through close collaboration together and exploring our different understandings we were able to reach a consensus about what we felt we had most strongly heard during the events.  To produce the themes, all the notes were pooled in an online repository.  We first read through the raw notes individually and recorded our own comments about what we felt were key points. We met up and compared these first impressions, considering what aspects we had noted had been emphasised, what was the same and where we picked up things that were different. We discussed our further impressions, having heard each other’s thoughts. We went back to the raw notes frequently, to keep checking in with the original comments. We also kept returning to our goals, of authenticity, transparency and collaboration, to keep these in mind as we considered how to summarise the key issues that we heard. We also returned regularly to the specific brief we were given by REPAG.  We provide a technical summary of this process, reporting how this mapped onto established qualitative methodological approaches, in Box 1, below. Box 1: Qualitative Technical Summary The analysis we performed can best be described as a reflexive thematic analysis (Braun and Clarke, 2019). Reflexive thematic analysis recognises that researchers bring their own interpretations to the data to construct familiar meaning. We felt this an important aspect of the process acknowledged by our Said, Heard, Reviewed, Did model, which recognised the need to check our interpretation with the attendees to preserve their voice and their meaning. Themes in this approach to analysis aim to reflect shared meaning, rather than just summarise topics, and we again felt this was consistent with our focus on authenticity and communicating what the attendees were expressing as important, rather than us just summarising issues that were discussed.  We conducted the following stages with the feedback itself:     1.    Familiarisation: All three members of the team reviewed all of the collated notes from the three events.     2.    Open Coding: All three members generated their own codes to consider the key issues being expressed. We met as a group to compare our initial coding, discuss differences, and agree on preliminary themes which we would return to the original notes to consider.     3.    Axial coding: We met several more times as a group to discuss what overarching thematic categories could be described that would adequately reflect the diversity of codes we had created.       4.    Selective Coding: To present our understanding back to the attendees, we created a google slide deck which summarised the themes and provided selected quotations from the notes documents.  We did not conduct this activity as typical academic research, but as a community consultation. We were mindful however of the need fo

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