The study will be undertaken by Te Hikuwai Rangahau Hauora—Health Services Research Centre (HSRC) over a period of approximately 12 months. It will include those with laboratory confirmed or probable COVID-19 and will have a particular focus on key populations. These include Māori, Pacific people, people with disabilities, and those people who contracted COVID-19 through their employment.

The findings will be shared with all participants and published by the research team. The evidence will be used to generate recommendations for how health services can best be oriented to be accessible, equitable, and meet the needs of people with COVID-19.

“It is so important to get the stories out there of what it has been like for the now over 3,000 people in Aotearoa who have had a diagnosis of COVID-19,” says HSRC’s senior Māori health researcher and co-lead investigator of the study, Dr Lynne Russell (Ngāti Kahungunu, Kāi Tahu).

“We see on the news the impact of this virus overseas but few of us know personally those in Aotearoa who have contracted it, or what that has been like for them and their whānau.”

“This research will not only give voice to their experiences. It will also provide greater clarity for others to base their decision-making on around how best they can protect themselves and their whānau going forward.”

The other co-lead investigator Dr Mona Jeffreys, a Senior Research Fellow at the HSRC, says they hope the research “will allow us to understand the lived experience of having had COVID-19 in Aotearoa New Zealand, and the impact on health and wellbeing of the individuals as well as their family/whānau.”

“Although there are many other similar studies ongoing worldwide, we believe that it is important to have a study centred on the experience in Aotearoa New Zealand.

“From our study, we hope to be able to provide evidence-based recommendations on which improvements to the health and social care system could be based. For example, if we find that cost was a barrier to getting care for patients with COVID-19, we could recommend, with appropriate economic costings, that GP visits should be subsidised for people with COVID-19 and their family/ whānau.

“The success of the study relies on people who have had COVID-19 coming forward to take part. We will be contacting everyone, via the Ministry of Health, but will not have direct contact details for anyone. We ask that if you have had COVID, or if you receive a letter from us, to please get in touch,” Dr Jeffreys says.

Dr Ian Town, Chief Science Advisor, Ministry of Health, says the research project will establish a multidisciplinary longitudinal study of people in Aotearoa New Zealand who have had COVID-19.

“It’s important that we improve our understanding of the short and longer-term physical, psychological, and economic impacts of COVID-19 on affected people in Aotearoa New Zealand, and to highlight any equity issues faced by this cohort.”

“The SARS-CoV-2 virus that causes COVID-19 is constantly evolving and will be around for some time. The more we understand the different effects the disease has on people the more we can plan our health responses,” Dr Town says.

An open tender process by the Ministry of Health called for a collaborative proposal by researchers who together have the credibility, connections and capability to design, lead, and execute such a project. The successful bid assembled a large, multi-disciplinary team, led in a te Tiriti-based partnership by Dr Russell and Dr Jeffreys.

Dr Russell is leading a team of Māori researchers whose work is embedded in Kaupapa Māori research approaches. “Past pandemics have devastated our whānau and hapū, including my own,” she says. “That history, and our lived experience of ongoing inequities, makes this study so important for Tāngata Whenua.”

“The Ministry of Health have reported there are over 200 Māori in Aotearoa who have had COVID-19. We really want all of them to come forward so we can evidence the impacts of this pandemic on our whānau and communities, and work out how best to support them and others who contract it.”

The co-lead investigators have a great team of other researchers and are supported by an Advisory Board of eminent researchers, as well as people with lived experience of COVID-19.

The Pacific arm of the study will be conducted by a team of Pacific researchers, led by Dr Marianna Churchward, Senior Pacific Research Fellow, HSRC. This team will ensure the appropriateness of the study methodology for Pacific people and ensure their voice is clearly heard in the study results.

Dr Churchward says that Pacific peoples have made up the majority of confirmed cases in recent outbreaks.

“Evidence shows that in previous outbreaks, while Pacific people had a lower risk of contracting COVID compared with NZ Europeans, they were twice as likely to experience a severe outcome that for some, resulted in hospitalisation,” Dr Churchward says.

“It is unclear how many Pacific individuals are experiencing ongoing symptoms as a result of COVID-19, and similarly there is limited information of the impact of Long COVID on Pacific individuals, their families and the community.

“To respond to the needs of Pacific families it is important we hear from them what their priority of needs are, and how current services they access need to improve to meet them.”

Overall, the work aligns well with ongoing and proposed work at Te Hikuwai Rangahau Hauora—Health Services Research Centre (HSRC). The Centre currently hosts a HRC Programme Grant into enhancing Primary Health Care Services.

In addition, Dr Jeffreys has particular interest in the relationship between Long COVID and ME/CFS (myalgic encephalomyelitis /chronic fatigue syndrome). Long COVID is the term commonly used to describe signs and symptoms that continue or develop after acute COVID-19.

The HSRC team will work in partnership with Dr Anna Brooks, Senior Lecturer at the University of Auckland and Jenene Crossan, who has lived experience of Long COVID.

"Currently there are no routine diagnostic tests that can be applied to this multi-system, chronic condition, which is why research is urgently needed to uncover biomarkers to help with long-term care," Dr Brooks said.

Dr Brooks has an interest in understanding the underlying disease mechanisms and immune dysfunction of Long COVID and other post-viral conditions, like ME/CFS, and is currently seeking funding opportunities to launch this critical research.

“We know that people with ME/CFS have really struggled to access appropriate care, and with carefully designed work, we hope that our research can benefit both patient groups,” Dr Jeffreys says.

The Ministry of Health funding allows the team to launch a nationwide study to fully understand the social, wellbeing and economic impact of COVID-19 in Aotearoa New Zealand, including long COVID. Having a longitudinal study of all people with COVID-19 will paint a picture of the needs and impacts of this disease on people and their communities across the country.