Recently, a research colleague conducted a study that found the Affordable Care Act reduced racial disparities for patients with cancer. The implications of the study could shape policies that increase access to timely cancer treatment for millions of Americans. One of the largest medical conferences in the country had asked her to discuss her study in front of thousands of doctors.
It was an honor that most academics only dream of.
But a few weeks before the presentation, she was asked to withdraw from discussing her work and have an academic professor present in her place. The reason: She was employed by a for-profit company, and the work could appear biased.
But her methodology was impeccable. And, although her company supported the study and provided her with data, it had no direct financial stake in the outcome. As she told me, “We did the study because we cared about the possible impact on patient health and racial equity.”
It’s easy to understand why people distrust for-profit research. For-profit industries like the pharmaceutical industry have spent decades trying to influence studies to get more of their products onto the market. A 2010 study published by Harvard and Toronto researchers found that 85 percent of industry-sponsored clinical trials had a positive result (meaning that a drug was shown to work), whereas only 50 percent of government-sponsored research had a positive result. As British science author Ben Goldacre pointed out in his 2012 book “Bad Pharma,” for-profit companies craft their clinical trials to include only those patients who are most likely to benefit from their drug. Perhaps that is why clinical trial and real-world populations look very different — and why some positive results from clinical trials don’t bear out in practice.
Decades of corporate influence in medical research have led to a growth of conflict of interest policies, forcing researchers to publicly disclose any ties with for-profit industries. These policies have brought to light the heavy influence of for-profit companies in academic research.
Some have argued to go a step further — to eliminate the involvement of for-profit industries in academic research.
Even though academic journals and meetings don’t strictly ban for-profit research, the majority of research studies — even those that are sponsored by for-profit companies — are led by academic physicians. As a result, most patients who want to participate in research to test a new drug or device need to go to an academic center that may be hours from home — assuming the trial has an opening.
But the opposition to for-profit research sometimes goes too far. As my colleague learned, the mere threat of bias often leads major academic journals and meetings to discount research conducted by scientists from for-profit companies — no matter how good the science is.
There are several trends that make elimination of the for-profit industry in research impossible — and maybe even dangerous.
And, if President Trump’s budget proposals ever become a reality, organizations such as the National Science Foundation could face a 12 percent cut in their allocations. This would mean that research that could prolong and improve patients’ lives may increasingly need to be funded by for-profit companies — or be scrapped altogether.
Second, patient data — data needed to conduct important research — is increasingly in the hands of for-profit industries. A decade ago, academic and government institutions were the primary sources of patient data. But since then, insurance firms and other for-profit companies have been collecting patient data that yields important information that could be used to shape medical care and health policy.
As an example, in cancer medicine, companies such as Flatiron Health and Foundation Medicine have collected de-identified repositories of patient health and genetic information. These organizations are increasingly using this data for research that can benefit patients.
A recent paper led by Flatiron and Foundation, published in the Journal of the American Medical Association, highlighted how such “real-world” data could help improve the design of clinical trials so that more patients — namely, underrepresented minorities — are included. Google and other for-profit companies have similarly published high-profile medical research in recent years.
But this is the exception, rather than the norm. Because for-profit researchers may face heavy bias from academic journal editors and reviewers, companies more commonly provide data to academic organizations, and then academic physicians lead and publish the study. As a result of this complicated process, we are probably only scratching the surface of what can be learned from this data.
Coincidentally, people are increasingly willing to share their data with for-profit companies for research.
In a 2018 Deloitte survey, 46 percent of patients reported being willing to share their personal data (including data from their health records and smartphones) with their health plan or with a hospital affiliated with a university, and 31 percent were willing to share data with device manufacturers or pharmaceutical companies. As people become more comfortable sharing data with private companies, these percentages may increase.
Finally, many talented people — people who previously may have gravitated toward academia — are increasingly working in the for-profit sector to advance science. Much of the advances in artificial intelligence, for example, have come from tech companies such as Google. These technologies hold the potential to improve the accuracy of interpreting radiology images or pathology data. Physicians and policymakers should be encouraging companies to present their work if it can benefit patients — rather than bar them from medical conferences and academic journals.
Important research will increasingly be conducted, funded or facilitated by for-profit companies. Admittedly, researchers and patients will need to be on guard: Patient informed consent (a.k.a. clearly specifying the benefits and risks of a study) will be more important than ever. And for-profit companies will need to follow appropriate research practices — including publishing negative results that may hurt their bottom-line and releasing analysis plans well in advance of publishing their research results — that are equally or more strict than most academic researchers follow.
Finally, these for-profit companies may need to make their data public so that independent bodies can confirm that their findings are accurate.
With these safeguards in place, patients and academics should be open to interactions with the for-profit industry to advance research. Otherwise, industries are unlikely to be motivated to use their data and expertise to improve public health.
Good science is good science — no matter who performs or funds it. If we want to help patients rather than boost egos, we should not automatically discount for-profit research, but rather we should encourage productive collaborations between for-profit, academic and other industries.
Ravi Parikh is an oncologist at the University of Pennsylvania and the Philadelphia VA Medical Center. He has received research funding from the University of Pennsylvania, Veterans Affairs Department and the Conquer Cancer Foundation (a nonprofit American Society of Clinical Oncology foundation).