Implementing Data Lessons From COVID-19 Could Improve Health Policy Decisions for Cancer Care
Aileen Murphy, PhD; Ann Kirby, PhD, Department of Economics, Cork University Business School, University College Cork, Cork, Ireland
COVID-19 detrimentally disrupted many facets of life, including how we collect and report disease incidence. The number of COVID-19 cases diagnosed and the associated numbers of patients hospitalized and in intensive care were published daily for nearly every country around the world. Individuals downloaded apps to their phones showing breakdowns of this data by location. This mass real-time data reporting represents a monumental change in how data on disease incidence are captured, analyzed, and published. The availability of these real-time data provided vital timely information to policy makers and their advisors, priming them to make public health decisions and issue guidance.
Inefficiencies and Imperfect Information
COVID-19 created further inefficiencies (in the allocations of goods and services) and information asymmetries in the delivery of healthcare services, both of which already plague the healthcare industry and can lead to market failures. In general, much inefficiency in the delivery of healthcare arises from unnecessary services, medical errors, or underuse of beneficial interventions.1 The initial “stay at home” public health advice as an infection protection measure reduced capacity in healthcare settings which, coupled with the redeployment of health services staff, translated into reduced or suspended services. So, while some services were inundated, others were underused, causing delayed diagnoses, treatments, and canceled procedures, including surgeries.
"The availability of these real-time data provided vital timely information to policy makers and their advisors, priming them to make public health decisions and issue guidance."
Traditionally in healthcare we think about individuals having imperfect information and therefore relying on healthcare providers (who have more information) to act as gatekeepers or principals to make the best decisions or recommendations for them. COVID-19, like other new conditions and variants, introduced another source of uncertainty—healthcare providers lacked information on the virus, how it spread, the incubation period, symptoms, and effective treatments. Very rapidly, public healthcare officials and organizations, along with clinicians and even politicians, recognized the need to collect data on the incidence and associated factors of COVID-19. And so, it was collected, analyzed, and published daily. These “big data” provided valuable real-time information, which reduced some of the imperfections and uncertainties of information, informed modeling, and ultimately informed healthcare policy decision making. Within weeks, data capture and analyses for the novel virus was light years ahead of traditional disease reporting. Similar efforts are underway for reporting vaccine uptake. The incentives for this rapid progress are clear—COVID-19 was not only disrupting individual’s health but also national and global economies.
But COVID-19 isn’t the only healthcare crisis facing us. The commitment to and investment in capturing data on COVID-19 needs to be applied to other areas to enhance health policy, including, but not limited to, cancer. One in every two people are now predicted to develop cancer in their lifetime2,3 with over 19 million new cancer cases being diagnosed annually.4 The spillovers from the COVID-19 disruptions have detrimental effects in other disease areas (including cancer), owing to the opportunity costs associated with stay-at-home orders, reduced capacity, and paused services causing delayed diagnoses and treatments.5
"Within weeks, data capture and analyses for the novel virus was light years ahead of traditional disease reporting."
Cancer Incidences Continue to Grow
As cancer incidences continue to grow internationally, early detection is vital to improving health outcomes and mortality. This is facilitated through cancer screening programs and referrals from general practitioners, both of which have been impacted by COVID-19, causing what some are calling “a cancer pandemic”6 with missed and late diagnoses. To realize the European Commission Cancer Mission, “By 2030, more than 3 million lives saved, living longer, and better,”7 this cancer pandemic needs to be halted and remedied. More, better quality, and earlier data could help.
Over the past 2 decades, cancer screening has become a vital component of public and preventive health in most developed countries. It enables early identification of patients, often at a presymptomatic stage (ie, before patients experience any symptoms). This facilitates early treatment, hopefully mitigating symptoms and other consequences, thereby improving health outcomes of the population at a reasonable cost. Furthermore, as disease detected earlier can be treated easier and less expensively, screening programs are considered to be cost-effective.8 That is to say, the additional costs are worth the additional benefits. As a result, screening for several cancers including breast, cervical, and colorectal cancer are recommended in many countries.9
For others, early symptoms may be detected during routine or dedicated consultations with general practitioners who refer the individual on for diagnostic tests. However, during the pandemic, opportunities for seeking help were also reduced with diminished general practice services and the move to teleconsultations. Furthermore, individuals’ fears of clinical environments, owing to risk of contracting COVID-19, altered their health-seeking behaviors with some people avoiding preventive and primary care even where these were available to them.5
Impact of COVID-19 on Cancer Services
While the universal “stay at home” public health advice proved successful at preventing patients with cancer from contracting COVID-19, these mandates/policies, coupled with the redeployment of staff, reduced capacity in healthcare settings, which often translated to reduced or suspended cancer screening services.
"We can learn from the innovative data approach adopted to inform polices during COVID-19 to establish, strengthen, and integrate data collection in cancer diagnosis and management services."
A recent review of international literature by a team of researchers in University College Cork examining the impact of COVID-19 on patients with cancer found evidence that between 30% to 92% fewer screening tests were performed in 2020 compared to the same period in 2019.5 This significantly reduced the number of new cancers diagnosed, a worrisome trend as you are more likely to survive cancer if you find it at an early stage. Early estimates of the downstream effects are sobering. For example, one study based in the United Kingdom suggests 3500 colorectal cancer cases were missed during the pandemic, as there was a 92% reduction in colorectal screenings.10 The review also found segregated evidence of treatment delays, postponements, cancellations, and deaths.
While many screening services have resumed, some people are still fearful of getting COVID-19 in clinical environments. In many areas, service levels are still reduced to adhere to public health guidelines so beneficial interventions continue to be underused. Furthermore, there are backlogs so it is likely that many patients will continue to be diagnosed at a later stage when treatment is more complex. This “cancer pandemic” impacts patients’ quality of life as well as their health outcomes and ultimately survival. This also increases demand for cancer treatment services, which are already stretched in most jurisdictions.
Additionally, underusing these beneficial interventions or employing treatments at suboptimal stages impacts the expected value of these interventions, worsens health outcomes, and increases healthcare expenditures. To reduce inefficiencies arising from underutilization and attain the expected clinical and cost-effectiveness, the services need to be re-established, with redeployed staff reinstated, and attendance levels returned to pre-COVID-19 levels.
"Having real-time data in all health areas would improve how health policies are designed and implemented so as to deliver the right care at the right time for the right patients."
However, achieving this in the midst of an ongoing pandemic is challenging and requires real-time data. The literature review conducted by the University College Cork mentioned above included 73 papers reporting on the health impacts of COVID-19 on cancer diagnosis, treatment, and services, of which 97% used secondary data, but only 11% employed national registry-type data. The remainder relied on hospital data (84%) and/or collected primary data (7%). Those employing national registry-type data were confined to the United Kingdom, Germany, France, Slovenia, and Brazil, which represented 23% of the countries in the study.5 While the study-specific question does impact the data employed, these studies were conducted during phase I of the pandemic and we are confident the authors employed the best data available at the time. If more and better quality real-time data were available, it could improve the quality and quantity of research/evidence available to inform decision making.
Opportunities to Improve
It is widely acknowledged that COVID-19’s disruption to cancer care will take time to resolve. Unfortunately, for many it will come too late. There is a phoenix opportunity here particularly for jurisdictions whose data systems lagged best practice (eg, no electronic health records or unique patient identifiers like Ireland).11,12 We can learn from the innovative data approach adopted to inform polices during COVID-19 to establish, strengthen, and integrate data collection in cancer diagnosis and management services. For example, real-time tracking tools on patient symptoms could improve health outcomes and communication with clinicians while also enhancing patients’ symptom management.13 Tracking incidence rates, survival, and outcomes fosters and enables real-time, appropriate decision making. This high-quality research could enhance evidence-based decisions about service provision and care.14 While some health systems have sophisticated cancer registries with such ability, it can still take up to 5 years to reach 100% completion owing to late submissions and incomplete data.14,15 Having real-time data in all health areas would improve how health policies are designed and implemented so as to deliver the right care at the right time for the right patients; existing cancer registries provide a practical starting point.
Dr Murphy is the project lead on the SEA-COVID-19 study examining the social and economic impact of COVID-19 on patients with cancer and survivors. The project is funded by MSD Global Oncology Policy Grant Programme and is conducted in collaboration with Breakthrough Cancer Research. Dr Kirby is a collaborator on the project.
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