Pandemic-related delays and backlogs in cancer diagnosis, screening and treatments can be rapidly addressed if health services invest now in data systems that monitor needs and resources, together with innovative ways to meet that need.
This was the key message coming from the 2021 Summit of the European Cancer Organisation, November 17‒18, which heard from a range of voices leading efforts to recover from the set-backs suffered due to the ongoing Covid-19 pandemic.
Karen Canfell, leader of the COVID-19 and Cancer Global Modelling Consortium, and director of the Daffodil Centre ‒ a joint venture between the University of Sydney and Cancer Council New South Wales ‒ talked about the work the consortium is doing to provide governments in high- and low-income countries with the information they need to help get their cancer services back on track. “We’re using best available data on health services disruption and cancer registries and synthesising this with emerging evidence on new approaches to cancer control,” she said.
The consortium brings together the cancer predictive modelling community in a global effort to use available data on disruption to cancer care and cancer control, and on the human, health service and economic impacts of that disruption, to help governments make informed decisions about the costs and benefits of options for mitigating that impact.
Rapid adoption of innovative approaches will be essential to helping cancer services recover from the pandemic and to ‘build back better’, said Canfell. As an example, she pointed to Australia’s “ambitious strategy” to effectively eliminate cervical and other HPV-related cancers by 2035. Having been the first country in world to set up a public HPV vaccination programme, in 2007, and among the first to switch from screening based on the pap smear to HPV-based screening, Australia is introducing a further innovation that is expected to transform screening take-up levels.
“From July next year Australia will become one of the first countries to offer the game changing self-collecting HPV test,” said Canfell. “Women can collect their own samples for screening. This will facilitate a whole new range of community-led and co-designed models that should greatly increase the acceptability and uptake.” The impact could be greatest, she added, among women of Australia’s aboriginal population, who are currently more than three times more likely to die of cervical cancer than women of the non-indigenous populations. Wider adoption of this approach, she said, could save more than 60 million women’s lives by end of the century.
The urgent need for accurate up-to-date data to enable informed recovery strategies was highlighted by Natalie Moll, Director General of the European Federation of Pharmaceutical Industries and Associations (EFPIA). She described how quick pharmaceutical companies had been to activate “pandemic preparedness plans”, including ratcheting up production to up to eight times normal levels.
But that work was undermined by a critical lack of data on “which countries needed what medicines and when.” They knew where the demand was coming from, but could not tell whether that demand was to address urgent patient need, or to stockpile, or even to sell on to a third country in ‘parallel trade’.
“Our members were producing these incredible amounts but did not know where to send it,” she said. Requests for data became a standing item in weekly calls with the European Commission. “State of the art reporting on shortages, data flow on stocks, epidemiology of disease, disease forecasts – we asked for forecasts… If we have to plan production and distribution, we need to have some idea of what is happening, what might happen and what the trends are.”
In the end, they got together with the generics industry, and tried to create their own forecasts, based on existing datasets such as the European Medicines Verification System, which is designed to track falsified medicines. “If there is one thing I learned, it is that more transparency on demand makes a huge difference,” said Moll. She echoed Canfell’s point about how essential innovation will be for efforts to recover ground after the pandemic, and said there was a lot that could be learnt from the creative ways the industry had adapted to the constraints posed by lockdowns ‒ switching to direct delivery to patients providing educational materials to self-administer at home, working with the military to deliver products to places that were hard to reach.
The flexibility shown by the regulators in helping find ways to avoid clinical trials dropping off a cliff edge during lockdowns was another great example mentioned by moll. “Europe stepped up as a region,” she said, “and… we should build on that to do that catching up, to make sure 2022 is the year we set the clock straight again.”
One innovative European initiative to try to throw a light on how the pandemic has impacted on different aspects of cancer services was launched at the Summit as part of the European Cancer Organisation’s Time to Act campaign. The Time to Act Data Navigator is an interactive tool that allows readers to browse data on the impact on screening, diagnosis, treatment, as well as on patients and people at risk and on healthcare professionals.
Described as a “living document” the tool gives access to the available data by country, region, or for Europe as a whole; and invites people to flag up emerging data sets that should be included.
Introducing the Data Navigator, Mark Lawlor, co-chair of the European Cancer Organisation’s Special Network on COVID-19, listed some headline figures that had emerged from the research and showed the size of the challenge facing cancer services. “100 million screening appointments; an estimated 1 million people who are living with undiagnosed cancers, up to 50% of surgeries and chemotherapy treatments delayed in some countries, four in ten health workers feeling burnt out.”
Having a clear picture at a regional, country and hospital level will be essential to understand the full impact of the pandemic and inform and monitor recovery strategies, he said.
The urgency of ending the backlogs and delays was highlighted by Robert Greene, a cancer survivor and current patient who sits on the European Cancer Organisation’s Patient Advisory Committee.
The data foremost in many patients’ minds, he said, were those that showed how the delays many are experiencing could impact on their chances. He referred to a paper published in November 2020 that showed treatment delays of four weeks can lead to a 6%‒13% higher risk of death, depending on cancer type, and that in breast cancer, a 12-week delay to surgery increases the risk of death by 26%.
These sorts of delays are “something patients deal with on a daily basis,” he stressed ‒ and in many European countries, currently facing yet another wave of Covid, they are getting worse, not better.
Greene, who is on the board of the European Cancer Patient Coalition, talked about the need to use data to raise awareness among the public and politicians about what the disruption to cancer services means for the lives of cancer patients and those yet to be diagnosed. “We need to use the data we have as a catalyst to move from plans to action. We need to work together to make a difference and make our lives matter.”
He cautioned, however, that innovations such as greater use of telemedicine, should not continue as the new normal without careful evaluation of their impact on patient care.