Dr Tristram Ingham: “They could think of a bubble as a fragile yet beautiful structure that has to be nurtured and preserved. And it introduced the concept of making sure you don't burst your bubble.”Dr Tristram Ingham's 'bubble' concept was initially intended for the disabled community, but it quickly captured the nation's imagination, framing our lives under lockdown.
When Prime Minister Jacinda Ardern first mentioned on live television that New Zealanders needed to form their own bubbles as part of the response to the global COVID-19 pandemic, it was a 'pinch yourself' moment for the concept's creator.
Dr Tristram Ingham, a senior research fellow in the Department of Medicine at the University of Otago, Wellington came up with the idea while advising the Ministry of Health about communications on COVID-19 for the disabled community.
While considering how best to describe the concepts of self-isolation and quarantine in simple terms, it occurred to him that everyone knew about bubbles. The idea had the advantages of being easily understood and of helping at-risk communities like the elderly and the disabled feel empowered.
“They could think of a bubble as a fragile yet beautiful structure that has to be nurtured and preserved. And it introduced the concept of making sure you don't burst your bubble.”
His bubble idea quickly went viral and has been credited by Director-General of Health Dr Ashley Bloomfield as helping to frame life under Alert Levels 4 and 3 more positively for New Zealanders.
“I remember the first time I saw the Prime Minister say it. It was like, 'wow, she said it, our concept got out there'. And there was a great sense of pride from the Disability Directorate that we had contributed to the whole picture.”
Ingham (Ngāti Kahungunu, Ngāti Porou), who chairs an advisory group for the Ministry of Health on Māori disability, Te Ao Mārama, had been asked by the ministry to join a COVID-19 disability sector steering group.
Aware of how much work there was to be done, and knowing Otago Vice-Chancellor Professor Harlene Hayne had given her approval to academic staff to help with the COVID-19 response where needed, he volunteered to do more.
As a Māori epidemiologist with a clinical background who has muscular dystrophy and uses a wheelchair, Ingham was in a unique position to give advice on support and communications for the disability community, and his offer was quickly taken up.
“Most people who go into medicine and public health and academia have a passion or a drive or a sense of wanting to contribute to the world in some way or other and, for me, that's a very personal sense of responsibility and drive.”
Before the global pandemic hit, epidemiologists seldom attracted the limelight and Ingham had no thoughts – then or now – of becoming a media star.
“For me, it is about making an impact and, from our kaupapa Māori paradigm, it's very important to be giving back to the communities you are serving. Our community needed action, so we do what we can.”
“For me, it is about making an impact and, from our kaupapa Māori paradigm, it's very important to be giving back to the communities you are serving. Our community needed action, so we do what we can.”
Ingham and his wife Ms Bernadette Jones (Ngā Wairiki, Ngāti Apa), a research fellow in the Department of Medicine, established a team to work on providing insights into the disability sector, and on developing content and communications for disabled people.
Their work and that of their collaborators, fellow academics Dr Meredith Perry, a senior lecturer on the University's Wellington campus, and Dr Brigit Mirfin-Veitch, a senior lecturer on the Christchurch campus, was commended by Dr Bloomfield in a letter to the Vice-Chancellor.
Dr Bloomfield wrote that Ingham's contribution was outstanding. His work included providing clinical advice on the risk COVID-19 posed to disabled people, and setting up a project to match disability and health data so the government could better understand the health impacts of COVID-19 on disabled people.
He further credited Ingham and Jones with providing clinical advice on infection prevention and control, including the use of personal protective equipment (PPE) for the disability sector and advising on how best to support tāngata whaikaha (Māori disabled).
Ingham describes working on the COVID-19 response as like building an aeroplane in flight. “It really felt like that. We were requisitioning things as we went.”
From the start Ingham and Jones decided they needed to put disability and Māori partnership principles into action, adopting a co-design process to develop content for the disability and mainstream sections of the ministry's website in tandem.
“A co-design process was quite a challenging innovation to propose very early on, but fortunately the Disability Directorate was very open to thinking outside the square. It was a sink or swim situation, so we did it.”
Ingham says it was vital for communications about COVID-19 to be available in a range of formats, so those with low literacy, vision and hearing impairments would be equally well informed.
Normally those translation processes can take a month, but in a global pandemic there was no time for business-as-usual.
“We sometimes had two hours from being told we needed messaging about an issue to actually having to go out, so it was a really quick turnaround and having people with the lived experience, knowledge of policy, formats and health literacy, as well as human rights and disability rights' viewpoints all there at the table was so critical.
“As a result of that, the Disability Directorate's efforts have been recognised, not only internally within the ministry and across government, but even the UN has picked up on it and is noting it as a world-leading disability achievement.”
The team was so successful that more content was developed for the disabled peoples' section of the ministry's website than for any other section.
Ingham says there is still much work to do, with the pandemic highlighting the lack of data about the country's disabled population – which made it near impossible to arrange any kind of outreach calling programme.
“If there is a second wave, we still have a lot of learning that needs to be rapidly implemented. Data sharing between agencies is a prime one. As part of this work I was asked to identify what risk various disabled people have, but the sad truth is in none of the data held by any agency do we actually know who disabled people are.”
His hope for the future is that the collaborative approach the disability directorate used for the COVID-19 response will be adopted more widely.
“It really was a team effort and is what I would like to see the future of health care and academic research in medicine be – it's about that closer cross-sector co-operation and partnership. If there's a public policy need, then it only makes sense to bring academics and policy advisers together.”
Funding
University of Otago
The researchers also wish to acknowledge the Deputy Director-General (Disability) Adri Isbister and her team within the Disability Directorate, in particular James Poskitt, Lara Penman and Dionne Steven, who enabled their participation and worked tirelessly to ensure the COVID-19 response met the needs of the disability community.