Matthew Ong is associate editor and an investigative reporter at The Cancer Letter, where his award-winning stories on the politics and business of cancer research have contributed to federal action and changes in public policy. Ong’s reporting has been recognized by the National Press Club, SPJ and eight other organizations.
Ong was selected as a 2021 AHCJ Health Performance Reporting Fellow to produce a series on the inequities in cancer care and its ruinous cost for many patients, particularly minorities, and how these disparities have only been exacerbated by the COVID-19 pandemic.
I spoke to Ong about the origin of the series and how he tackles such extensive, data-laden reporting and writing.
This is part of your Health Care Performance fellowship. How did you decide to propose this topic?
The challenges of cancer treatment and survivorship are very personal to me. I’ve watched several family members, including my mother, endure the cascade of cancer care. It’s no small feat, even for highly functioning people who are at no risk of financial ruin.
As an immigrant from Malaysia, I learned to navigate U.S. health care on my own and experienced, firsthand, how difficult being a patient here can be — despite my know-how as a health policy journalist.
Without access to affordable private hospitals and without universal health coverage, how do cancer patients from vulnerable communities get adequate care, especially if they are uninsured and have limited literacy and resources?
I saw AHCJ’s Health Care Performance fellowship as an opportunity to examine systemic inequities and racial injustice in health care, identify areas of unmet need, and find targeted policy solutions.
How many parts do you plan to report?
For now, my plan focuses on:
- systemic underrepresentation of racial/ethnic minorities in the workforce at premier cancer centers and at federal health agencies, and among patients who access common services
- technological barriers that prevent underserved patients from gaining access to comprehensive cancer care and clinical trials
- federal authority and regulatory mandates to improve health equity and access
- health care coverage for underserved populations.
In related equity work, my colleagues and I have also been investigating gender bias and sexual misconduct in academic medicine, which most recently led to a congressional letter that demands answers on NIH policies on sexual misconduct.
What are the biggest challenges in reporting on such a huge subject?
Our long-form stories are geared towards informing C-suite and clinical decisions at more than 250 institutions.
Meeting that solutions-based standard is my main challenge: To 1) identify specific policy areas that can improve best practices or standards of care, and 2) create a compelling narrative that balances human interest with the academic interpretation of data that our audience expects from The Cancer Letter.
The data you’ve included is very impressive. How did you gather it?
The stories I’ve worked on this summer are follow-ups to a survey my colleagues and I designed in 2020 to assess diversity in the leadership of top cancer centers in North America. The inaugural study, based on data from 78 cancer center directors, found striking underrepresentation of racial/ethnic minorities.
In 2021, a peer-reviewed study of NCI-designated cancer centers, published in JAMA, found similar results. A separate analysis by the National Cancer Institute of its own workforce also found dramatic underrepresentation. In late July, U.S. News & World Report introduced a suite of health equity measures demonstrating underrepresentation among patients across 80% of U.S. hospitals.
My analyses of these developments in 2021 have focused on what stakeholders can do to respond to systemic racism and mitigate racial disparities, which are often caused or accompanied by entrenched poverty, limited access, and low educational attainment in their service areas.
Often when we report on health equity and/or disparities, we start with the patients. But you’re taking a hard look at not only the providers of care but also the researchers and who receives research grants. That’s a very novel approach. What made you decide that was worth exploring?
As a resident in a majority-Black neighborhood in D.C., I am witness to the cost of disparities: By February 2021, a year into the pandemic, 75% of those who died from COVID-19 in the District were Black, even though the city is now 41% Black.
As the U.S. becomes increasingly diverse, most medical establishments understand that diversity, equity, and inclusion (DEI) in the workforce are essential to providing good care.
A diverse workforce can build trust, reach local minority communities more effectively, and introduce culturally competent responses to inequity. Diverse researchers can ask and answer questions that might otherwise never get investigated.
We’re not here to tell underserved racial minorities to pull themselves up by their own bootstraps or, as I’ve heard some say, “Why can’t ‘they’ just have more personal responsibility?” — that’s not a public health solution. We’ve got to meet patients where they are.
Can more deaths be prevented — not just from SARS-CoV-2 — if diverse workforces in medicine and in public health collaborate with communities to develop sustainable interventions? I think that’s worth exploring.
What impact does this have on equity in treatment and outcome by race and ethnicity? Or is it too soon to know that?
We know increased investment in programs that improve access and coverage can lead to significant reductions in cancer disparities by race/ethnicity. For instance, Medicaid expansion is linked to elimination of disparities in time to cancer treatment for Black patients, and measurable improvement in overall cancer mortality in states that implemented it.
Because health systems are now making DEI an executive priority, I think it’s too soon to observe the impact of these practices on treatment or to isolate their effect on patient outcomes at the population level.
It’s important to take a longer view. Solely prioritizing outcomes sets up a catch-22: Administrators should not expect immediate ROI as justification for funding these programs—these aren’t engineering projects, and a hardline approach would have a chilling effect on potential diverse leaders.
You report on cancer every day. What surprises, if any, have come out of reporting this series?
I’m surprised by the magnitude of underrepresentation and racial disparities — especially for Black and Hispanic communities — across so many arenas in U.S. health care. It’s also disconcerting to learn that disparities research was, before 2020, considered a really niche interest instead of a mainstream priority.
I’m aware these are longstanding problems, but seeing the disparities data roll in week after week from new studies — on top of #BlackLivesMatter and #StopAAPIHate — has led to existential contemplation on my part.
I was also under the impression that oncology, as one of the most integrated, prolific, and well-funded of the biomedical sciences — with a more developed community outreach and engagement focus compared to other fields — would have more to show for it.
I must acknowledge, however, that a lot of progress has been made over the past decade, but there’s much left to be done. Importantly, there’s momentum now to get more done.