This piece was originally published on Bill of Health, the blog of Petrie-Flom Center at Harvard Law School.
The Biden administration plans to greatly increase funding for the National Institutes of Health (NIH) in 2022, presenting the agency with new opportunities to better align research funding with public health needs.
The NIH has long been criticized for disproportionately devoting its research dollars to the study of conditions that affect a small and advantaged portion of the global population. For instance, three times as many people have sickle cell disease — which disproportionately affects Black people — than cystic fibrosis — which disproportionately affects white people. Despite this, the NIH devotes comparable research funding to both diseases. These disparities are further compounded by differences in research funding from non-governmental organizations, with philanthropies spending seventy-five times more per patient on cystic fibrosis research than on sickle cell disease research.
Diseases that disproportionately affect men also receive more NIH funding than those that primarily affect women. This disparity can be seen in the lagging funding for research on gynecologic cancers. The NIH presently spends eighteen times as much on prostate cancer than ovarian cancer per person-years of life lost for every case, and although this difference is partly explained by the fact that prostate cancer is far more prevalent than ovarian cancer, this disparity persists even after prevalence is accounted for. Making matters even worse, funding for research on gynecological cancers has fallen, even as overall NIH funding has increased.
Disparities in what research is funded are further compounded by disparities in who gets funded. Black scientists are also about half as likely to receive NIH funding than white scientists, and this discrepancy holds constant across academic ranks (e.g., between Black and white scientists who are full professors). This disparity is partly driven by topic choice, with grant applications from Black scientists focusing more frequently on “health disparities and patient-focused interventions,” which are topics that are less likely to be funded. Recent calls to address structural racism in research funding have led the NIH to commit $90 million to combatting health disparities and researching the health effects of discrimination, although this would represent less than two percent of the Biden administration’s proposed NIH budget.
The disconnect between research funding and public health needs is also driven by the fact that the NIH tends to fund relatively little social science research. For instance, police violence is a pressing public health problem: in 2019, more American men were killed by police violence than by Hodgkin lymphoma or testicular cancer. But unlike Hodgkin lymphoma and testicular cancer, which receive tens of millions of dollars of research funding from the NIH every year and additional funding from non-governmental organizations and private companies, the NIH funds little research on police violence. For instance, in 2021, only six NIH funded projects mentioned “police violence,” “police shooting,” or “police force” in their title, abstract, or project terms, while 119 mentioned “Hodgkin lymphoma” and 24 mentioned “testicular cancer.”
While many view the NIH as an organization focused exclusively on basic science research, its mandate is much broader. Indeed, the NIH’s mission is “to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.” Epidemiologists, health economists, and other social science researchers studying how societies promote or undermine health should thus receive NIH funding that is more proportionate to the magnitude of the health problems they research.
Research funding disparities have multiple causes and warrant different solutions, from prioritizing work conducted by scientists from underrepresented backgrounds, to ensuring that there is gender parity in the size of NIH grants awarded to first-time Principal Investigators. To address the broader problem of scientific priorities not reflecting the size of health problems, the NIH should instruct grant reviewers to consider how many people are affected by a health problem, how serious that health problem is for each person affected by it, and whether a disease primarily affects marginalized populations. In addition, the NIH should commit to funding more research on public health problems — like police violence — that cause substantial harm but receive relatively little attention from the health research enterprise.
As the NIH prepares for a massive influx of funding, it must follow through on its commitment to address health research funding disparities.
This piece was originally published on Bill of Health, the blog of Petrie-Flom Center at Harvard Law School.
Clinicians across medical settings commonly euphemize or understate pain — a practice that has concerning implications for patient trust, consent, and care quality.
Intrauterine device (IUD) placement offers an instructive case study, and highlights the need for transparency in describing painful medical procedures. IUDs are one of the most effective forms of birth control, and tens of millions of women have them placed every year. Clinicians typically describe the pain associated with IUD insertion as “uncomfortable… but short lived” or “three quick cramps.” But patients who have undergone IUD insertion have described it as “on a cosmic level,” “such blinding agony I could barely see,” and “like someone shocking my cervix with a taser.”
Although some patients experience little pain with IUD insertion, most patients experience moderate to severe pain. Clinicians’ language thus paints a picture of pain that is less severe than that which many patients experience – and this is not unique to IUD placement — often, clinicians refer to pain as “pressure” or call a painful procedure “uncomfortable.”
There are likely several reasons why physicians downplay pain. First, clinicians may not know how much a procedure hurts. Second, clinicians may understate pain to alleviate patients’ anxiety or reduce the pain they experience. Third, if clinicians believe a procedure is in a patient’s best interest, they may downplay the pain associated with it to increase a patient’s likelihood of giving consent.
In some cases, clinicians may not know how painful a procedure is. For instance, one study found that physicians assess IUD insertion to be about half as painful as patients report it to be. But after performing a procedure many times, clinicians should have a reasonable sense of the range of reactions patients typically have. If they’re unsure, they should ask patients, or read accounts of patients who have undergone that procedure.
There is also evidence that describing the pain associated with a procedure can increase patients’ reported pain and anxiety. Downplaying expectations may thus reduce pain. This is an important consideration and justifies not disclosing how painful a procedure is for patients who do not want to know.
But there are several problems with this approach. For one, patients can talk to their friends or access information online about other patients’ experiences of a procedure, undermining any potential analgesic effects of downplaying pain. In addition, there are other ways to reduce pain that do not involve misleading patients. Finally, while failing to disclose how painful a procedure is may marginally reduce how much it hurts, there are often substantial discrepancies between patients’ and clinicians’ assessments of pain.
Indeed, most studies that have looked at this question have found that clinicians underestimate pain relative to patients, and that for more painful procedures, clinicians’ underestimation is even more pronounced. So patients may still experience more severe pain than expected, undermining their long-term trust in their clinicians.
Clinicians may also recognize that telling a patient how painful a procedure is decreases the likelihood a patient will consent to that procedure. Clinicians may accordingly understate the unpleasantness of procedures that they believe are in a patient’s best interest. For instance, IUDs work extremely well (and are the most commonly used birth control among physicians). For most patients, the pain associated with IUD insertion lasts for minutes, while IUDs last for years. Clinicians may thus feel that IUDs are the best option for many patients and may downplay the pain of having one placed to increase the likelihood that patients will choose to get one. While this approach is understandable, patients are entitled to choose what care is in their interest. Some may reasonably decide that they do not want to risk incurring severe short-term pain, even if the long-term benefits are substantial.
In addition to undermining trust and the validity of a patient’s consent, downplaying pain may lead clinicians to undertreat it. Indeed, clinicians frequently underrecognize and undertreat pain, and women and people of color are particularly likely to have their pain overlooked.
Admittedly, the pain associated with IUD insertion has proven challenging to treat. For instance, many patients are advised to take Advil before the procedure, despite evidence that it doesn’t help. Other interventions also don’t work very well, leading the American College of Obstetricians and Gynecologists to conclude that “more research is needed to identify effective options to reduce pain for IUD insertion.”
But in highly resourced settings, where anesthesia, narcotics, and anti-anxiety medications are available, clinicians can control patients’ procedural pain. For instance, the default is to sedate patients for colonoscopies, even though many patients who have received colonoscopies without sedation report that it is not very painful. Conversely, patients are rarely offered sedation for IUD insertion, even though this would eliminate their pain. Sedation comes with its own risks, but patients are generally given the option of taking on these risks when pain is viewed as sufficiently severe. When pain can be managed and it is not, this reflects value judgments (i.e., about a patient’s ability to tolerate a given level of pain).
Being able to place IUDs in an office without sedation works well for many patients and makes IUDs more accessible. But fear of pain may lead some people to choose a less effective form of birth control or forgo it entirely. Given how well IUDs work, this is unfortunate and preventable.
Ultimately, for IUDs and other important medical procedures, clinicians should ask patients how much they want to know about a procedure and describe the range of pain most patients experience for those who wish to know. If patients are concerned about the level of pain they might experience, clinicians should provide them with a range of effective options for managing that pain. Failing to engage in these conversations risks undermining trust, compromising the validity of consent, and undertreating pain.