Sir Robert Francis QC – Chair of Healthwatch England
Public health will not work without the public’s trust. Unfortunately, there is a loss of trust in public institutions among some in our ethnic minority communities. If you ask those communities who are hesitant about having the vaccine, you will find they have a good reason for that. This is a fundamental truth that we must all recognise if together we are to tackle health inequalities in this country.
Ongoing experiences of disparity are still commonplace, but we must also accept that the legacy of historical discrimination and disadvantage has a continuing effect.
As a result, establishing trust is not going to be a quick process. Trust needs to be earned and the only way to do that is to engage with people, listen to their concerns and talk through their ideas for change.
Services then need to follow up on this, both making change happen and demonstrating to others that sharing their views leads to improvement.
All too often, though, the pressures of getting the job done mean we look for shortcuts, such as treating large groups as though all people in them were the same. At best, this leads to sporadic engagement, and while it may get a project over the line, it fails to build any real ongoing trust. At worst, interventions can be seen as tokenistic and end up damaging relationships further.
The COVID-19 vaccine roll-out has highlighted these issues. Once the Government and the NHS identified vaccine rates of take-up were lower among specific Black, Asian and Minority Ethnic communities, rightly they took swift action, and we did see a significant rise in uptake.
But the challenge persists. As highlighted in new research from the Healthwatch network, in partnership with the NHS Race and Health Observatory and Traverse, by not really getting to the heart of the issues underpinning low confidence in the vaccine, the campaign has also had a negative impact in places.
“We may be from the same ethnic backgrounds, but we still don’t have the same experience.” – A participant in our study.
Participants in our research from African, Bangladeshi, Caribbean and Pakistani backgrounds who were or had been hesitating to accept the vaccine told us that they felt singled out to be blamed for a problem that needs fixing. They felt frustrated that no one had come to speak to them and that, once again, assumptions had been made, based on their ethnic backgrounds, about why they were hesitant about taking a vaccine. For example, many objected to being described collectively as ‘BAME’. They felt patronised by simplistic tactics, like the use of celebrities to push messages out. As one participant in our research told us, “what do comedians and cricketers know about vaccines?”.
Healthwatch England’s new five-year strategy has put tackling health inequalities front and centre of our work. So, to help support the vaccine effort, we created a safe space where people could come and share their views without judgement. We made it clear that the aim was not to convince them to get vaccinated. The findings are not an instruction manual on convincing those resistant to the vaccine to have it.
Instead, our research sets out the importance of recognising the right of individuals to make their own decisions. Participants had very individual concerns, informed by their own experiences. Because of this, addressing ambiguities and misinformation around the vaccine is crucial. For example, while there is no evidence to suggest the vaccine has any impact on people’s fertility, concerns have arisen because of the short timeframes in which the vaccines have been developed.
“I then feel very frustrated due to the lack of info. I am not anti-vaccine. I am anti make your own story up depending on what is on the government agenda!” – A participant in our study.
Existing evidence, developed from decades of developing vaccine technology, could be used to explain why the risks of such complications are so unlikely. Leaving the ambiguities and uncertainties hanging in the air but not openly discussed allows mistrust to grow. So it is much better to address concerns up-front and transparently.
To enable this, the Government should ensure all known information is readily available to people. People know they can’t read everything, but it’s vital that they feel nothing is hidden from them.
“It is totally disrespectful to think that any celebrity can change anyone’s decision about the vaccine.” – A participant in our study.
The way messages about the vaccine are delivered was also important to participants. They valued information from local people with tangible experience and knowledge of the vaccine, such as a local GP or scientist. Spokespeople at a national level, whether politicians or national professional leaders, were seen as too removed to be trustworthy.
These valuable insights can help those designing and running the ongoing vaccine roll-out. People want information in a way that suits their needs and empowers them to make their own decisions, rather than feeling they are being told from on high what to do. Moving forward, this also has important lessons about building the trust necessary to tackle health inequalities more broadly.
“I wonder how long the vaccine will last in our bodies and how often we will need a top up. I also wonder about the side effects that may happen in the future that we are not aware of and what effects they will have on our health.” – A participant in our study.
To do this, we need to engage people in a way that deepens our understanding of the issues they face, including their fears based on their previous lived experiences and their need for straightforward information from people they know and trust. We need to start to build meaningful relationships with them. It will require those in power to listen to the experiences of people facing inequality and use their views to enact change that they can have confidence will improve their lives.
At Healthwatch, we will continue to play our part by pushing for a sharper focus on hearing the views of those the system currently overlooks and make sure their feedback results in better health and care for everyone.
I cannot describe what is needed any better than one of our participants:
“Let people make an informed decision and choice. Stop trying to push people into a corner to take the vaccine. Give them the info, be open and honest.”