Purpose of the PSP and background
The purpose of this protocol is to clearly set out the aims, objectives and commitments of the East London Pandemic Priority Setting Partnership (PSP) for Ethnic Minority Communities in line with James Lind Alliance (JLA) principles. The Protocol is a JLA requirement and will be published on the PSP’s page of the JLA website. The Steering Group will review the Protocol regularly and any updated version will be sent to the JLA.
The JLA is a non-profit making initiative, established in 2004. It brings patients, carers and clinicians together in PSPs. These PSPs identify and prioritise the evidence uncertainties, or ‘unanswered questions’, that they agree are the most important for research in their topic area. Traditionally PSPs have focused on uncertainties about the effects of treatments, but some PSPs have chosen to broaden their scope beyond that. The aim of a PSP is to help ensure that those who fund health research are aware of what really matters to patients, carers and clinicians. The National Institute for Health and Care Research (NIHR – www.nihr.ac.uk) coordinates the infrastructure of the JLA to oversee the processes for PSPs, based at the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC), University of Southampton.
The purpose of the East London Pandemic PSP for Ethnic Minority Communities is to understand why the COVID-19 pandemic disproportionately affects ethnic minority communities and understand the priorities for action to deal with the health and wellbeing impact of the COVID-19 pandemic on East London ethnic minority communities. There is mounting evidence of stark national and local disparities in health outcomes associated with COVID-19 in the UK. The report on disparities in the risk and outcomes from COVID-19 from Public Health England showed that mortality rates from COVID-19 were highest among people of Black and Asian ethnic groups, when compared to White ethnic groups (PHE, 2020). The Office of National Statistics analysis showed that Black males are 4.2 times more likely to die from COVID-19, and Black females are 4.3 times more likely than White ethnic males and females (ONS, 2020). After accounting for age, sex, deprivation and region, those of Bangladeshi ethnicity the risk of death was twice more likely than people of White British ethnicity (PHE, 2020).
To address this complex multifactorial challenge, we propose using a bottom-up, community centred approach. Building on strong existing relationships, this PSP will be undertaken across East London, a densely urbanised, multi-ethnic area and amongst the highest incidence and death rates of the COVID-19 pandemic (Apea, 2021). We will adopt a participatory and qualitative approach. We hope to gain deep insight into the determinants of COVID-19 and understand the priorities for action to deal with impact of the COVID-19 pandemic on health and wellbeing based on the lived experience of East London ethnic minority communities. The partnership will use the findings to develop shared understanding, enabling collaborative prioritisation of community needs. These prioritised needs will inform the development of tailored interventions for future research and community initiatives with future funding.
Funding for this PSP is being provided by Barts Charity.
Aims, objectives and scope of the PSP
The aim of the East London Pandemic PSP for Ethnic Minority Communities is to identify the unanswered questions about wider health determinants and experiences of East London ethnic minority communities in the context of the COVID-19 pandemic and then prioritise the needs that are the most important for research and community initiatives to address. The focus of the East London Pandemic PSP for Ethnic Minority Communities will help to inform national and local responses to the COVID-19 pandemic to better support ethnic minority communities.
The objectives of the PSP are to:
- work with community members (including patients and carers), community organisations, community engagement teams, clinicians and academics to explore the lived experiences of East London ethnic minority communities pre COVID-19 pandemic (health, education, housing, poverty, household dynamics, employment, and faith) and during the COVID-19 pandemic (experiences and understandings of the disease and its wider impact).
- to develop shared understanding of community needs
- to agree by consensus a prioritised list of those needs to inform the development of tailored interventions and future research
- to publicise the results of the PSP and process
- to take the results to local authority, NHS commissioning and research commissioning bodies to be considered for funding.
Following discussion with the Steering Group in March 2021, it was agreed that the scope of the East London Pandemic PSP for Ethnic Minority Communities should focus on the following:
- To explore the structural drivers of health inequalities through the lived experiences of East London ethnic minority communities in the domains of, but not limited to, health, education, housing, household dynamics, poverty, employment and immigration status in the context of the COVID-19 pandemic
- To explore the impact of COVID-19 pandemic on the health and wellbeing of East London ethnic minority communities with a focus on physical and mental health, community involvement, nutrition, health seeking behavior and access to healthcare
- To provide recommendations for tangible solutions to help inform national and local responses to the COVID-19 pandemic and better support ethnic minority communities
The PSP will exclude from its scope questions about:
- questions or priorities without a UK focus or relevance
The Steering Group is responsible for discussing what implications the scope of the PSP will have for the evidence-checking stage of the process. Resources and expertise will be put in place to do this evidence checking.
The Steering Group
The Steering Group includes membership of patients and carers and clinicians , as individuals or representatives from a relevant group.
The East London Pandemic PSP for Ethnic Minority Communities will be led and managed by a Steering Group involving the following:
Community organisations/individuals who work with ethnic minority communities in East London
- Safia Jama, Women’s Inclusive Team
- Sundus Abdullahi/Representative, Social Action For Health
- Angela Basoah, Vice Chair BAME Community Reference Group at Newham Council
- Sherina Begum, East London Mosque
- COVID 19 Health Champions
- Dianne Barham/Althea Bart, Healthwatch
- Mimi Mzari/Matteo Besana, Doctors of the World
- Sarah Teather, Jesuit Refugee Service
Barts Health representatives
- Yunnus Dudhwala, Head of Chaplaincy & Bereavement Services
- Abbas Mirza, Community Engagement Lead
Academic researcher representative
- Dr Megan Clinch, Senior Lecturer in Medicine and Society, QMUL
Local authority representative
- Dr Claire Greszczuk, Assistant Director of Public Health, London Borough of Newham
- Dr Vanessa Apea, Consultant Physician in Sexual Health and HIV Medicine, Clinical Lead - Sexual Health, Royal London Hospital and Honorary Senior Lecturer QMUL
- Dr Miski Osman, Barts Health NHS Trust
James Lind Alliance Adviser and Chair of the Steering Group
- Suzannah Kinsella, JLA
The Steering Group will agree the resources, including time and expertise that they will be able to contribute to each stage of the process, with input and advice from the JLA.
Organisations and individuals will be invited to be involved with the PSP as partners. Partners are organisations or groups who will commit to supporting the PSP, promoting the process and encouraging their represented groups or members to participate. Organisations which can reach and advocate for these groups will be invited to become involved in the PSP. Partners represent the following groups:
- people with lived experiences of belonging to ethnic minority communities in East London
- carers of people belonging to ethnic minority communities in East London
- health and social care professionals - with experience of working with ethnic minority communities in East London
- academics or researchers focussed on ethnic minority communities residents across East London
- charities or support groups focussed on ethnic minority communities residents across East London
- other organisation with experience of working with ethnic minority communities residents across East London
Some organisations may be judged by the JLA or the Steering Group to have conflicts of interest. These may be perceived to potentially cause unacceptable bias as a member of the Steering Group. As this is likely to affect the ultimate findings of the PSP, those organisations will not be invited to participate. It is possible, however, that interested parties may participate in a purely observational capacity when the Steering Group considers it may be helpful.
The methods the PSP will use
This section describes a schedule of proposed steps through which the PSP aims to meet its objectives. The process is iterative and dependent on the active participation and contribution of different groups. The methods used in any step will be agreed through consultation between the Steering Group members, guided by the PSP’s aims and objectives. More details of the method are in the Guidebook section of the JLA website at www.jla.nihr.ac.uk where examples of the work of other JLA PSPs can be seen.
Step 1: Identification and invitation of potential partners
Potential partner organisations will be identified through a process of peer knowledge and consultation, through the Steering Group members’ networks. Potential partners will be contacted and informed of the establishment and aims of the East London Pandemic PSP for Ethnic Minority Communities.
Step 2: Awareness raising
Steering Group members of the East London Pandemic PSP for Ethnic Minority Communities will need to raise awareness of their proposed activity amongst ethnic minority communities across East London, their carers and community organisations working directly with ethnic minority communities, in order to secure support and participation. In the context of the COVID-19 pandemic, this may be done by online meetings, or there may be other ways in which the process can be launched, such as sharing information on social media (Twitter, Instagram, LinkedIn, YouTube) and via the website (Amplifying Lives). It may be carried out as part of steps 1 and/or 3. The Steering Group should advise on when to do this. Awareness raising has several key objectives:
- to present the proposed plan for the PSP
- to generate support for the process
- to encourage participation in the process
- to initiate discussion, answer questions and address concerns.
Step 3: Identifying evidence uncertainties
The East London Pandemic PSP for Ethnic Minority Communities will carry out an initial consultation to gather uncertainties surrounding ethnic minority communities across East London. A period of 2 months will be given to complete this exercise (which may be revised by the Steering Group if required).
The East London Pandemic PSP for Ethnic Minority Communities recognises that the following groups may require additional consideration. Groups may include those whose first language is not English, those who face cultural barriers to discussing certain health issues, those who might be excluded from online surveys due to lack of access or skills, asylum seekers or refugees. The Steering Group compromises of multiple community representatives and advocacy organisations who can help facilitate communication and aid in designing an effective outreach strategy.
The method of consultation must be transparent and inclusive. The Steering Group will use the following methods to reach the target groups. An online survey will be developed and disseminated to ethnic minority communities across Tower Hamlets, Newham and Waltham Forest (aged>=16). Following this, we aim to conduct semi-structured, in-depth interviews via telephone or secure videocall in line with COVID-19 restrictions and need for social distancing. We hope to use a subsample of participants from the online survey.
Existing sources of evidence uncertainties relating to ethnic minority communities and the COVID-19 pandemic will also be searched. This may include research reports/literature, literature reviews, community research into COVID-19 outcomes in East London, community initiatives to capture the lived experiences of to ethnic minority communities and protocols for systematic reviews being prepared and registers of ongoing research.
Step 4: Refining questions and uncertainties
The consultation process will produce ‘raw’ questions and comments indicating the areas of uncertainty from the perspectives of people with lived experiences of belonging to ethnic minority communities across East London. These raw questions will be categorised and refined by the PSP Information Specialist into summary questions which are clear, addressable by research, and understandable to all. Similar or duplicate questions will be combined where appropriate. Out-of-scope and ‘answered’ submissions will be compiled separately. The Steering Group will have oversight of this process to ensure that the raw data is being interpreted appropriately and that the summary questions are being worded in a way that is understandable to all audiences. The JLA Adviser will observe to ensure accountability and transparency.
This will result in a long list of in-scope summary questions. These are not research questions and to try and word them as such may make them too technical for a non-research audience. They will be framed as researchable questions that capture the themes and topics that people have suggested.
The summary questions will then be checked against evidence to determine whether they have already been answered by research. This will be done by the PSP Information Specialist - Miski Osman. The PSP Information Specialist will complete the JLA Question Verification Form, which clearly describes the process used to verify the uncertainty of the questions, before starting prioritisation. The Question Verification Form includes details of the types and sources of evidence used to check uncertainty. The Question Verification Form should be published on the JLA website as soon as it has been agreed to enable researchers and other stakeholders to understand how the PSP has decided that its questions are unanswered, and any limitations of this.
Questions that are not adequately addressed by previous research will be collated and recorded on a standard JLA template by the PSP Information Specialist. This will show the checking undertaken to make sure that the uncertainties have not already been answered. The data should be submitted to the JLA for publication on its website on completion of the priority setting exercise, taking into account any changes made at the final workshop, in order to ensure that PSP results are publicly available.
The Steering Group will also consider how it will deal with submitted questions that have been answered, and questions that are out of scope.
Step 5: Prioritisation – interim and final stages
The aim of the final stage of the priority setting process is to prioritise through consensus the identified needs and key local or national responses suggested to ethnic minority communities in the COVID-19 pandemic recovery and beyond. This will involve input from ethnic minority communities across Tower Hamlets, Newham and Waltham Forest. The JLA encourages PSPs to involve as wide a range of people as possible, including those who did and did not contribute to the first consultation. There are usually two stages of prioritisation.
1. Interim prioritisation is the stage where the long list of questions is reduced to a shorter list that can be taken to the final priority setting workshop. This is aimed at a wide audience, and is done using similar methods to the first consultation. With the JLA’s guidance, the Steering Group will agree the method and consider how best to reach and engage East London ethnic minority communities in the process. The most highly ranked questions (around 25) will be taken to a final priority setting workshop. Where the interim prioritisation does not produce a clear ranking or cut off point, the Steering Group will decide which questions are taken forwards to the final prioritisation.
2. The final priority setting stage is generally a one-day workshop facilitated by the JLA. With guidance from the JLA and input from the Steering Group, up to 30 people will be recruited to participate in a day of discussion and ranking, to determine the top 10 questions for research. All participants will declare their interests. The Steering Group will advise on any adaptations needed to ensure that the process is inclusive and accessible.
Dissemination of results
The Steering Group will identify audiences with which it wants to engage when disseminating the results of the priority setting process, such as researchers, funders and the communities. They will need to determine how best to communicate the results and who will take responsibility for this. Previous PSPs’ outputs have included academic papers, lay reports, infographics, conference presentations and videos for social media.
It should be noted that the priorities are not worded as research questions. The Steering Group should discuss how they will work with researchers and funders to establish how to address the priorities and to work out what the research questions are that will address the issues that people have prioritised. The dissemination of the results of the PSP will be led by the PSP Strategic Lead.
The JLA encourages PSPs to report back about any activities that have come about because of the PSP, including funded research. Please send any details to email@example.com.
Agreement of the Steering Group
The East London Pandemic PSP for Ethnic Minority Communities Steering Group agreed the content and direction of this Protocol on 21/05/2021.
Communities that are represented in the PSP steering group include: Black African, Black Caribbean, Somali, South Asian, Bangladeshi
• Public Health England, 2020. Disparities in the risk and outcomes of COVID-19 [online] Available at: <https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/908434/Disparities_in_the_risk_and_outcomes_of_COVID_August_2020_update.pdf> [Accessed 12 March 2021].
• Office for National Statistics, 2021. Coronavirus (COVID-19) related deaths by ethnic group, England and Wales - Office for National Statistics. [online] Available at: <https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/articles/coronavirusrelateddeathsbyethnicgroupenglandandwales/2march2020to10april2020#main-points> [Accessed 12 March 2021].
• Apea VJ, Wan YI, Dhairyawan R, Puthucheary ZA, Pearse RM, Orkin CM, et al. Ethnicity and outcomes in patients hospitalised with COVID-19 infection in East London: An observational cohort study. BMJ Open. BMJ Publishing Group; 2021 Jan 17;11(1):42140.