Improving health outcomes for people living with post-acute sequelae of COVID-19 (long COVID)

Respond to an urgent need

Professor Gail Matthews, an infectious disease expert, was on the front line in hospitals when the long COVID emerged. Gail began researching this new condition. She has become a leading Australian expert on the long COVID. But progress was difficult.

“At first, people with this disease were ignored. A section of academic reviewers didn’t think COVID had been around for long or was worth investing in,” Gail recalls. For this reason, “obtaining research funding was a big problem in Australia. This delayed our research compared to other countries.

It took a government inquiry into the long COVID to change that. The Sick and Tired report urged us to coordinate a national program of collaborative long-COVID research. The Minister of Health and Aged Care has invited Gail to chair an independent expert advisory panel to set research priorities for this funding.

“I’m so glad we finally got the chance to talk about 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.”

A significant impact for consumers

“Long COVID can be devastating for the person with the disease and the people who love them,” confirms panel member Dr. Elizabeth Deveny, CEO of the Consumers Health Forum. “People are experiencing debilitating symptoms. They face prejudice and stigma because they have a disease that is not well defined.

“People with this condition want support to get better faster. They want a better understanding of what is happening to them, better clinical care, better diagnoses. Our task was to ensure that the research will have a meaningful impact on these consumers.

Various expert voices

Paramedic Health Professor Jennifer Alison was one of 9 diverse expert voices on the panel. “If you want to target funding to one condition, you have to engage a wide variety of researchers,” says Jennifer.

“Panel members should have a background in basic science through health care delivery. Each of us sees things from different angles.

Panel members also had experience working with communities in various parts of Australia. “We had to build trust quickly and be willing to compromise to reach consensus,” notes Elizabeth.

Answering big questions

“We tried to keep the individual with long COVID at the heart of the plan. We decided on the big questions that needed to be answered to improve their health outcomes,” says Gail.

The panel agreed that we need to know more about:

• what causes the long COVID
• what factors affect prognosis
• people’s experience of living with long COVID
• the best therapy
• the best models of care
• to the needs of vulnerable communities.

Planning research to advance our knowledge

The committee designed the research plan to advance our knowledge in these areas. “To date, the approach to research in this area has been piecemeal,” Gail tells us. “We tried to change that 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 sums to groups of individuals to come together and collaborate. I think that’s how good research is done.

“There are a lot of benefits to having a planned approach,” Elizabeth acknowledges. “This means we can align different types of projects so that the success of one enhances the success of the other. We tried to plan the range of projects needed to start making changes.

For Jennifer, research planning allows us to get things moving quickly. For example, the grants will provide funding for rapid research into pharmacological and non-pharmacological therapies. There will be more funding available for projects that achieve positive results. “It will help long COVID research move forward,” Jennifer tells us.

“Everyone knew this was an issue that needed to be addressed. You could feel the determination in the virtual room to make this happen. I think the panel process was done well, and that’s all credit,” Elizabeth concludes.

Read it Research plan on the post-acute sequelae of COVID-19.

Learn more about the Expert Advisory Committee on Post-Acute Sequelae of COVID-19 (PASC).