Infectious diseases expert Professor Gail Matthews was on the front line in hospitals when long COVID emerged. Gail started researching this new condition. She became a leading Australian expert on long COVID. But progress was difficult.
‘In the early days, people with this condition were ignored. A section of academic reviewers didn’t think long COVID existed or was worth investing in,’ Gail remembers. For this reason, ‘getting research funding was a big problem in Australia. It set our research back compared to other countries.’
It took a government inquiry into long COVID to change this. The Sick and tired report urged us to coordinate a national collaborative research program on long COVID. The Minister for Health and Aged Care invited Gail to chair an independent Expert Advisory Panel to set research priorities for this funding.
‘I am gratified that we finally had the chance to speak to what the community wants,’ Gail tells us. ‘There is an urgent need for a sustainable plan to improve health outcomes for people living with long COVID.’
Meaningful impact for consumers
‘Long COVID can be devastating for the person who has the condition and the people who love them,’ confirms panel member Dr Elizabeth Deveny, CEO of the Consumers Health Forum. ‘People experience debilitating symptoms. They face prejudice and stigma because they have an illness that’s not well defined.
‘People with this condition want support to get better faster. They want a better understanding of what’s going on for them, better clinical care, better diagnostics. Our task was to ensure research will have a meaningful impact for these consumers.’
Diverse expert voices
Professor of Allied Health, Jennifer Alison, was one of 9 diverse expert voices on the panel. ‘If you’re going to target funding towards a condition, you need to engage a wide variety of researchers, Jennifer says.
‘Panel members should be from the basic sciences through to healthcare delivery. Each of us see things from different perspectives.’
The panel members also had experience working with communities in diverse parts of Australia. ‘We had to quickly build up trust and be willing to compromise to get to a consensus,’ Elizabeth notes.
Answering the big questions
‘We tried to keep the individual with long COVID at the heart of the plan. We decided what big questions need to be answered to improve their health outcomes,’ Gail says.
The panel agreed we need to know more about:
- what causes long COVID
- which factors affect prognosis
- people’s experience of living with long COVID
- the best therapeutics
- the best models of care
- the needs of vulnerable communities.
Planning research to progress our knowledge
The panel designed the research plan to progress our knowledge in these areas. ‘To date, the approach to research in this area has been piecemeal,’ Gail tells us. ‘We tried to change this by asking for synergies between research groups, people living with long COVID and other stakeholders.
‘Rather than giving grants to individual researchers, the plan gives larger amounts of money to groups of individuals to come together and collaborate. I think that’s the way good research gets done.’
‘There is a lot of benefit in having a planned approach,’ Elizabeth agrees. ‘It means we can align different kinds of projects so that success in one reinforces success in another. We tried to plan the range of projects needed to start making change.’
For Jennifer, planning research gives us the ability to make things happen quickly. For example, grants will offer funding for rapid turnaround research on pharmacological and non-pharmacological therapies. There will be more funding available for projects that find positive results. ‘This will help research in long COVID move forward,’ Jennifer tells us.
‘Everyone knew this is a problem that needs to be fixed. You could feel the determination in the virtual room to make this happen. I think the panel process was done well, and that’s a credit to everybody,’ Elizabeth concludes.
Read the Post-Acute Sequelae of COVID-19 Research Plan.
Learn more about the Post-Acute Sequelae of COVID-19 (PASC) Expert Advisory Panel.
