In this blog Claire Stevens, Chief Executive, Voluntary Health Scotland, explains how VHS has worked to influence policy on the COVID-19 vaccine rollout.
As Scotland’s leading intermediary and network for health charities Voluntary Health Scotland (VHS) has been involved in COVID-19 related policy-influencing work throughout the pandemic, gathering and inputting third sector evidence to a wide range of Scottish Government and Public Health Scotland working groups.
By December 2020 the COVID-19 vaccine programme was getting underway, as the NHS rolled out the Pfizer and Astra Zeneca vaccines on what would rapidly become an industrial scale. The roll-out started with the most elderly and vulnerable, and moved onto increasingly younger age groups, in accordance with the priority groups set by the UK Joint Committee on Vaccination and Immunisation (JCVI).
It was clear that high levels of take-up of the vaccine would be fundamental in the battle to control the pandemic, move forward with social and economic renewal, recover services and restore life as we used to know it.
Health inequalities and the vaccine
VHS knew it was crucial that the policy makers in charge understood the enablers and barriers to the take-up of the vaccine and we had a strong sense that the third sector would have unique insights into these. Third sector organisations are often closer to communities and have a keen understanding of their needs and the barriers they face in accessing services. We wanted to ensure that the distribution of the COVID-19 vaccine didn’t inadvertently widen the health inequalities gap by leap-frogging and leaving behind population groups who already face the greatest inequalities, who find healthcare harder to access and who need more support to do so.
As The King’s Fund explains:
“the inverse care law was suggested thirty years ago by Julian Tudor Hart in a paper for The Lancet, to describe a perverse relationship between the need for health care and its actual utilisation. In other words, those who most need medical care are least likely to receive it. Conversely, those with least need of health care tend to use health services more (and more effectively).”
A blue invitation through the letterbox might not be enough to ensure everyone rolls up their sleeves for Scotland – and more worryingly, what if you don’t have a letterbox because you are homeless, do not have a fixed address or will never get a letter because you aren’t registered with a GP? We were concerned that the emerging term ‘vaccine hesitancy’ was judgemental and could create an unfair blame culture.
Last year Dr Andrea Williamson, a founder Deep End GP and Clinical Senior Lecturer at the University of Glasgow, published a paper called Missingness in health care- a ‘new normal’ is not a level playing field (PDF) . In it she shines a light on patients who time and again miss healthcare appointments, and she reflects on a year of dealing with COVID-19:
“In the places where marginalisation is common: a person grappling with poverty, the struggle with problem drug use, the experience of homelessness; missingness in health care has been more visible at the patient level”.
She argues that missingness is a patient safety issue. Whilst Dr Williamson’s focus is on improving the overall primary care response for those who currently fall through the cracks, VHS could see how adapting her recommendations to the operation of the vaccine programme would help ensure a preventative approach towards those people who may otherwise be missed and miss out.
Research objectives and methodology
In January 2021 we decided to carry out research that could influence the equitable roll-out of COVID-19 vaccine in Scotland. Our main objective was to gather what might be vital third sector intelligence and share it with policy makers in the Scottish Government and Public Health Scotland. We had early meetings with a number of interested officials who made it clear that the roll-out would follow the JCVI priority groups, and that there were no plans (or mechanism) to monitor take-up of the vaccine by anything other than by those groups, ie largely by age.
It was clear that we would need to work very fast if we were to have any influence, as the vaccine programme roll-out was increasing at pace. Over three weeks in February 2021 we promoted and distributed an online survey targeted at VHS member organisations and our wider network, via other third sector intermediaries (e.g. Senscot and CHEX) and through our website.
The survey had just nine questions, designed to elicit narrative responses (qualitative data) about:
- Demographics that may struggle to access the vaccine when eligible
- Barriers and enablers to vaccine take-up
- Efficacy of the public facing communications on the vaccine
- Role of third sector in promoting the vaccine and supporting take-up
We had consulted Public Health Scotland about the questions, to ensure they would align with their own evaluation interests concerning the vaccine (we are members of their evaluation group).
Outputs
170 people responded to our survey with detailed qualitative responses, so we knew we had a very rich source of data. 83% of responses were from national and local third sector organisations, with a further 12% from the public sector, and 5% from carers and volunteers. Additionally, three charities (Waverley Care, RNIB Scotland and SAMH) provided additional data of their own volition in the form of mini-reports, such was their engagement with the issues in question.
Our policy engagement officer Kiren Zubairi then developed a matrix of themes and issues, as the basis for analysis, leading to a short report and a Powerpoint presentation that has been adapted for various events and audiences. The raw data has been made available to Public Health Scotland and NHS Lothian, and is available to other public bodies for appropriate research purposes on request.
Findings and recommendations
We published the research on 1 April 2021 in the form of a short report, Vaccine inclusion – reducing health inequalities one vaccine at a time (PDF).
The research identifies a number of population groups that might/would struggle to take-up the vaccine, even when eligible (in JCVI terms) to receive it. Some of the key demographics highlighted within the research are at very high risk if they do contract COVID-19. These include people who are homeless, prisoners, people living in poverty, people who abuse drugs and alcohol, black and ethnic minority groups, unpaid carers, gypsy travellers, groups that have been shielding for health reasons, refugees and asylum seekers.
Barriers identified covered a wide range of issues including poor communications/health literacy, myths and false news, mistrust of the vaccine’s efficacy and fear of side-effects, fear of leaving home to go to a mass vaccine centre, and public transport issues (access, cost, fear of contamination). Not being registered with a GP and/or not having a fixed address was a further issue.
The research concluded that our health system has a human rights duty to take a pro-active approach regarding certain population groups, to ensure that they are not failed by such an important public health intervention. This requires tailored and targeted communications, assertive and empathetic outreach to bring the vaccine to where people are, accessible and affordable transport, and aftercare and support. The COVID-19 vaccine programme shouldn’t be viewed as a stand-alone intervention, but should form part of a whole-system, preventative approach to public health and to health inequalities. Third sector and community organisations should be involved in the planning, communications and delivery of the vaccine programme, as our sector may be closest to those communities in greatest need, have local data and intelligence that public sector agencies may lack, and be trusted by those communities.
Influencing the policy agenda
From the onset of our research planning we had some confidence that this work had the potential to be influential. As members of the Public Health Scotland Flu Vaccine and COVID-19 Evaluation Working Group we were able to generate interest and capitalise on our relationship with that group. We worked through our existing health contacts in the Scottish Government to reach and engage with the senior officials who were responsible for the combined policy areas of track and trace, national resilience and the vaccine programme. Our working relationships with cross-sectoral colleagues in the Scottish Government health inequalities short-life working group, including Deep End GPs, also helped.
What was remarkable is that the research generated significant interest in policymakers before it had even been analysed, written up or published. The very fact that we were conducting such research provoked questions and discussion that might not otherwise have taken place at all or so quickly. This was from what had seemed like a standing start in January: the initial lack of any public plan to ensure an inclusive vaccine programme and the very evident lack of any data concerning the issues we were interested in. We presented our very initial findings on 10 March, first at a VHS event and then at a Deep End GPs round table. Thereafter, it became clear that our findings were circulating widely amongst the public health community and that they were seen as credible, authoritative, and also unique, in so far as there wasn’t comparable data available anywhere.
In March, the JCVI announced that homeless people could be included in Priority Group 6 for the roll-out of the vaccine, a real milestone. Concurrent with this, the Scottish Government put out a public invitation to all adult unpaid carers to register for a vaccine appointment. In mid-March, at the behest of Ministers the Scottish Government established a cross-sectoral COVID-19 Inclusive Vaccine programme, and invited VHS to join the steering group which met weekly. This programme quickly gained traction, with health boards asked to develop and share their local inclusive vaccine plans with the government. At its meeting of 7 April, the steering group agreed to adopt the recommendations we had set out in our research. This was real proof of our influence.
There is now a momentum behind this work. In April, the Deep End GPs published Covid-19 Vaccine Deployment for Marginalised Groups (PDF) a report arising from the March round table at which we had presented our initial findings. By May, NHS Forth Valley and NHS Fife were able to report they had successfully piloted assertive outreach clinics for homeless and gypsy traveller populations, and by doing so had succeeded in vaccinating people who had never previously engaged with vaccination programmes of any kind (e.g. flu, shingles). Meantime, VHS was collaborating with NHS Lothian, Edinburgh and Lothians Health Foundation and Lothian’s four Third Sector Interfaces (TSIs), in an initiative to gather localised data, influence NHS Lothians’ vaccine delivery plan, and support grassroots organisations (via a small grants scheme) to support excluded communities and service users to take up the vaccine.
We obviously do not claim credit for all of this progress but we know we have had an influence; importantly, without the research our influence would have been considerably less. As of June 2021 VHS is still seeking to establish what other exemplars of inclusive vaccine practice health boards, TSIs and other third sector partners are pioneering and implementing across Scotland. Our ambition is to persuade policy and decision makers that the current vaccine programme can be a gateway and an example of best practice to what needs to be much more preventative programmes of public health and health care. Collaboration and partnership working are key to that, built on a shared vision for a Scotland where health inequity is a thing of the past.
For authoritative and comprehensive information about the COVID-19 vaccine programme in Scotland, go to NHS Inform.
Upcoming: VHS is holding a further online event on 24 August 2021 to discuss the findings and recommendations of the research.
This blog considers some of the issues we explored in the recent Policy Scotland/Third Sector Research Forum event, Using Third Sector Research to Influence Policy and Practice. You can access the seminar content here.