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Going Beyond Counting First Authors in Author Co-citation Analysis
Get PDFThe present study examines one of the fundamental aspects of author co-citation analysis (ACA) - the way co-citation
counts are defined. Co-citation counting provides the data on which all subsequent statistical analyses and mappings
are based, and we compare ACA results based on two different types of co-citation counting - the traditional type that
only counts the first one among a cited work's authors on the one hand and a non-traditional type that takes into
account the first 5 authors of a cited work on the other hand. Results indicate that the picture produced through this non-traditional author co-citation counting contains more coherent author groups and is therefore considerably clearer. However, this picture represents fewer specialties in the research field being studied than that produced through the traditional first-author co-citation counting when the same number of top-ranked authors is selected and analyzed. Reasons for these effects are discussed
The Care Children Deserve: Some Thoughts on the Effort to Open a Children’s Hospital in El Paso, TX
No full textPhoto by Chris Carzoli on Unsplash
INTRODUCTION
l. The Need for a Children’s Hospital
El Paso, Texas did not receive a children’s hospital until 2012, much later than would be expected given its demographics and geographic isolation. By that time, there were already nearly 250 children’s hospitals spread across the United States, some in areas far smaller, far older, and in far closer proximity to other urban centers.[1] Without accounting for its substantial population of undocumented immigrants,[2] El Paso is the country’s 22nd largest city (and situated in its 70th most populous county).[3] The nearest American city of comparable size is Phoenix, AZ, located about 350 miles away. Moreover, El Paso has a decidedly young demographic skew: more than 28 percent of the population is under the age of 18, compared to 26.5 percent of the population in Texas and 23.1 percent of the population nationally.[4] This gap is expected to widen in the coming years.[5]
El Paso children also have less access to care than children in cities with comparable populations and population structures. Though the situation has improved in the last decade, El Paso contains several Health Professional Shortage Areas (HPSAs) for primary care, dental health, and mental health. This is in addition to many Medically Underserved Areas (MUAs) for primary care, specialty care, dental health, and mental health.[6] This means that El Paso children wait longer for their appointments and are often seen by tired and overworked providers. Before the El Paso Children’s Hospital (EPCH) opened its doors if these children needed advanced care, they had to leave the city, and many simply did not have the resources to do so. It is more difficult to assess the quality of the care that they were able to receive locally, as few systematic reviews of pediatric outcomes in the region were conducted during that period. Nevertheless, several El Paso physicians look back and describe an “unacceptably low” standard of care.[7] Regardless, access and quality are interrelated, and children’s hospitals tend to promote both.[8]
ll. Why Did It Take So Long?
There are several reasons why El Paso did not receive a children’s hospital until years after the need for it became apparent to forward-thinking physicians and other interested parties, including select parent groups.
a. There were no wealthy benefactors willing to establish a children’s hospital endowment, forcing the hospital’s proponents to ask the taxpayers to issue 42,000, more than 25,000 below the national average.[10] Property values are low, and Texas does not do much to redistribute funds from wealthier to poorer parts of the state, so resources for community development are limited and spending priorities must be chosen carefully.
b. The wealthier, less-Hispanic parts of El Paso were reluctant to fund a project that was billed primarily as a means of assisting poor, Hispanic children.
c. Two previous children’s hospital projects had fallen through after their for-profit sponsors pulled out, and some El Pasoans were hesitant to try again.
d. Tenet Healthcare, the owners of El Paso’s largest for-profit hospital network, opposed the project. They feared competition for the basic services they provided in their “children’s wing,” and perhaps knew that they might no longer get away with providing substandard pediatric care. When, over their objections, the project appeared on the ballot they launched a vigorous advertisement campaign against it. Some physicians joined them.
e. Low levels of education and civic engagement in El Paso, coupled with an underdeveloped sense of entitlement, led to complacency. There was a lack of political will for a big project like the children’s hospital because many El Pasoans did not think that they deserved better than what they were getting. They were accustomed to a certain quality of care and a certain level of access to care. If they were not content with the status quo, they were at least tolerant of it.
This last point is worth elaborating upon. Fewer than 24 percent of El Pasoans complete a bachelor’s degree, compared to nearly 32 percent of Texans and nearly 35 percent of Americans.[11] The city’s high school graduation rate is just above 75 percent, nearly 10 percent below the corresponding national and state rates.[12] Additionally, the majority of available jobs are low-paying and physically demanding, so many well-educated El Pasoans choose to make their lives elsewhere (“brain drain”).[13] Poverty and limited English proficiency compound upon low levels of education to lower access to the instruments of democracy and erode democratic culture, and they make the population more susceptible to manipulation by powerful interests – on any side. Tenet Healthcare’s advertising campaign was better funded than the campaign for the children’s hospital, and physicians and experts lined up on both sides which created confusion.
In addition, and perhaps counterintuitively, given El Paso’s poor and largely Hispanic population (>80 percent),[14], [15] trust in the healthcare system is high.[16] One possible explanation is exceptional quality of care, though all the facts suggest this is not the case. Other explanations include a high degree of physician-patient ethnic concordance, a cultural deference to authority, and underentitelment, that is, the belief that one deserves less than what dispassionate others conclude s/he deserves. Any population can grow accustomed to the status quo and poverty, lack of education, and membership in an otherwise vulnerable group can prevent information filtering in from outside the city – nationwide trends – from really “taking hold.” However, in El Paso, the situation is still more complicated. Many El Pasoans have family in Mexico and cross the border regularly for shopping or recreation. In many ways, El Paso and Ciudad Juárez form a single community, and even El Pasoans who have been in the country their entire lives tend to maintain a strong connection to Mexico. This is relevant because the quality of medical care in Mexico (though improving) is low,[17] and expectations for what the government (or any large entity) will do for the common man lower still.[18]
El Paso voters ultimately made the decision to fund the construction of a children’s hospital, though by a margin of less than 2 percent and with fewer than 12 percent of eligible voters weighing in.[19] The El Paso Children’s Hospital has more than delivered on its community health improvement promises. It has reduced pediatric outmigration for subspecialty and surgical care by more than 80 percent, substantially increased the county’s physician workforce, and launched several successful preventive health and health education programs. In addition, it has promoted cutting-edge research on a slew of pediatric conditions and helped to increase the city’s physician retention rate.[20] But there have been some serious hiccoughs along the way, including a bankruptcy crisis in 2015 that caused almost half of the hospital’s board to resign,[21] and there is still a lot of work to be done.[22]
lll. A Better Approach to Building Children’s Hospitals
The difficulty in opening a children’s hospital in El Paso serves as an important starting point for a discussion on the principles of ethical governance. Most agree that when the private sector fails to address an important community need, it is the responsibility of the government to intervene. However, people differ on what they consider an “important community need” and the precise role of government in filling needs. They may also prefer that government intervention occur at the local, state or federal level, or some combination of the three, depending on the issue before them.
Five separate feasibility studies were conducted in the lead-up to the 2007 vote. All agreed that El Paso needed a children’s hospital.[23] ,But none discussed how much it needed a children’s hospital, i.e., what trade-offs would be appropriate for the community to make in order to build one. Nor could they. People will always prioritize differently. Perhaps a delay in funding a children’s hospital would allow for a restructuring of the school system. Americans usually prefer to decide such issues at the ballot box, either directly or through their representatives. However, for projects like a children’s hospital, where not all community members are informed enough on the pertinent issues to perform a cost/benefit analysis, and the risks of not acting can be severe, some other mechanism, or some supplementary mechanism, of deciding on the issue is more appropriate.
In determining whether and what types of state intervention are justified, ethicists weigh several competing concerns: beneficence (the good that is likely to come to the community, folding in the harm to certain stakeholders), justice (in this case, for children, in terms of access to and quality of care) and autonomy (of the voters). However, in many communities across the country, after the need for a children’s hospital is demonstrated[24] if local voters and their representatives weigh in at all, it need only be to decide on zoning and other logistical issues because wealthy benefactors are willing to foot the bill.[25] In communities like El Paso, where no such benefactors make themselves known, voters or their representatives are asked to make a much more difficult decision: whether to fund a children’s hospital by raising taxes on themselves. That may not be fair to them, especially if their community is already poor, and it is certainly not fair to the children whose health and quality of life are at stake.
Though El Paso did eventually vote to fund a children’s hospital, similarly situated communities may vote differently, and their children could suffer as a result, just as El Paso children suffered during the delay. Communities like El Paso may also be in a poor position to make truly autonomous decisions on this issue. Poverty and lack of education can lead to confusion or ambivalence owing to lack of information or access to the tools necessary to become informed. For-profit hospital chains unwilling to establish their own children’s hospitals, and others who stand to lose out, can use their considerable power to unduly influence the debate, which can also be inaccurately cast as one about redistributing resources from wealthy white households to poor, “undeserving” ethnic minorities.
But one need not accept an argument about diminished community autonomy to conclude that some form of state or federal intervention to tip the scales on specific children’s hospital projects is ethically permissible. This is partially because the autonomy concern, with respect to the children’s hospital issue, is a red herring. As noted above, voters and local officials in most communities barely weigh in on children’s hospital projects at all. Projects which, it is important to stress, concern the welfare of a non-voting vulnerable group and so maybe should not be subject to majoritarianism to begin with! Moreover, if a state or the federal government were to establish a uniform process for determining whether a community needs a children’s hospital, e.g. delegating authority to a health planning agency that performs regular and transparent health infrastructure assessments and proactively issues “certificates of need” (as opposed to issuing them only after an application by interested parties), the democratic process is respected more than if a children’s hospital were simply foisted upon a community by wealthy benefactors. If the state or federal government were also to help qualifying local communities obtain their children’s hospitals, much local hesitancy about the hospital would shrink.
One may wonder whether this is just “kicking the problem up to another level of government.” There is, after all, no assurance that political will for building children’s hospitals in needy communities will be higher at the state or federal level than at the local level. It may even be lower, as state and federal officials are more emotionally removed from the conditions on the ground. However, a key difference is that the reliance on a single governmental agency – one that has the resources to perform thorough, less biased assessments – removes a lot of the extraneous variables with bearing on the success of a children’s hospital project. Such an agency focuses only on the first part of the project, establishing that the hospital is necessary. This is a lower hurdle to clear, and it provides momentum for the next parts of the process, which may include varying degrees of state or federal government intervention, all of which could also be managed by a different agency.
This system also makes capture by powerful interests difficult. Not only do these interests often appear less powerful at the state or federal level than locally, but a health planning agency applies objective criteria in making its determinations, and the next steps occur “in a different house.” Finally, state or federal involvement leads to parity across communities and sounder resource management because children’s hospitals generally serve areas outside the communities in which they are situated.
Once a certificate of need has been issued to a community indicating that it needs a children’s hospital, the state[26] may (1) build the hospital using its own funds or funds appropriated to it for that purpose by the federal government or (2) let the local community take the lead, providing subsidies on a sliding scale to ensure that the communities which struggle to afford a children’s hospital still get one. For a variety of political and budgetary reasons, this latter route is more realistic, and it has the advantage of building local community buy-in, which could be important if the children’s hospital is to successfully recruit personnel, receive referrals from local physicians and actively participate in the local medical education/research enterprises.
A certificate of need issued by an impartial government agency as part of its mandate might itself be enough to persuade a local community to take action. It could spur proponents to organize, if they had not done so earlier, and could be used as ammunition in their advertisement campaigns. But if the community is still apathetic or hesitant, the state can launch educational initiatives, including those aimed at changing underentitlement, and help it negotiate with for-profit hospital chains to see if they can be incentivized to take a children’s hospital project on. The state may also consider issuing different types of certificates of need and, for the highest level, require that the community build a children’s hospital, in the same way, that it (often) requires it to have police or fire protection. Subsidies would almost certainly have to be offered for this to be politically viable (and ethically acceptable).
CONCLUSION
There are several issues with this framework, including precisely how a financially infeasible but necessary children’s hospital can be made feasible. Details will have to be filled in. Nevertheless, it is something worth investigating. It could significantly improve the current situation, in which communities like El Paso are essentially left to fend for themselves.
Disclaimer: The author has family associated with the El Paso Children’s Hospital. Chetan Moorthy and Sadhana Chheda are his parents. Chheda served as Board Secretary and works at Children’s as a neonatologist. Moorthy contracts with Children’s to provide radiology services. Both have practiced in El Paso for decades, and their experience is drawn upon to support some of the article’s claims, particularly those for which no hard data has been collected.
[1] Casimir, Georges. 2019. “Why Children’s Hospitals Are Unique and So Essential.” Frontiers in Pediatrics 7 (July). https://doi.org/10.3389/fped.2019.00305.
[2] Pew Research Center’s Hispanic Trends Project. 2019. “Metro Area U.S. Unauthorized Immigrant Population Estimates, 2016 and 2007.” Pew Research. March 11, 2019. https://www.pewresearch.org/hispanic/interactives/unauthorized-immigrants-by-metro-area-table/.
[3] “City and Town Population Totals: 2010-2019.” 2020. United States Census Bureau. https://www.census.gov/data/tables/time-series/demo/popest/2010s-total-cities-and-towns.html.
[4] “El Paso, Texas: Demographic Profile.” 2017. EPTX. 2017. https://www.elpasotexas.gov/economic-development/business-services/data-and-statistics/population.
[5] “Community Health Needs Assessment 2014.” 2014. El Paso Children’s Hospital. https://elpasochildrens.org/wp-content/uploads/2019/08/epch-chna-report-final-9-29-14-v3.pdf.
[6] Ibid.
[7] Moorthy, Chetan, and Sadhana Chheda. 2020. Conditions in El Paso, Texas: Physician Services and Patient Perceptions. Interview by Gyan Moorthy. In-Person.
[8] “All Children Need Children’s Hospitals.” n.d. National Association of Children’s Hospitals and Related Institutions. Accessed November 29, 2020. https://www.upstate.edu/gch/pdf/academics/allchildren.pdf.
[9] Schalden, Mary. 2015. “Children’s Hospital Timeline.” El Paso Times, October 5, 2015. https://www.elpasotimes.com/story/news/2015/10/05/childrens-hospital-timeline/73394588/.
[10] “El Paso, Texas: Demographic Profile.” 2017.
[11] Ibid.
[12] “High School Graduation Rate Data for El Paso, TX.” 2018. Open Data Network. 2018. https://www.opendatanetwork.com/entity/1600000US4824000/El_Paso_TX/education.graduation_rates.percent_high_school_graduate_or_higher?year=2018.
[13] Anderson, Lindsey. 2015. “More People Leave El Paso for Elsewhere than Other Major Cities.” El Paso Times, July 22, 2015. https://www.elpasotimes.com/story/news/local/2015/07/22/more-people-leave-el-paso-elsewhere-than-other/71987220/.
[14] “El Paso, Texas: Demographic Profile.” 2017.
[15] Armstrong, Katrina, Karima L. Ravenell, Suzanne McMurphy, and Mary Putt. 2007. “Racial/Ethnic Differences in Physician Distrust in the United States.” American Journal of Public Health 97 (7): 1283–89. https://doi.org/10.2105/AJPH.2005.080762.
[16] Moorthy, Chetan, and Sadhana Chheda. 2020.
[17] Barber, Ryan M., Nancy Fullman, Reed J. D. Sorensen, Thomas Bollyky, Martin McKee, Ellen Nolte, Amanuel Alemu Abajobir, et al. 2017. “Healthcare Access and Quality Index Based on Mortality from Causes Amenable to Personal Health Care in 195 Countries and Territories, 1990–2015: A Novel Analysis from the Global Burden of Disease Study 2015.” The Lancet 390 (10091): 231–66. https://doi.org/10.1016/S0140-6736(17)30818-8.
[18] Lagos, Lorenzo Felipe. 2012. “Institutional Trust: The Case Study of Mexican State Institutions.” Student Perspectives on Institutions, Choices, and Ethics 7 (4): 39.
[19] “Final Election Results (2007).” 2007. El Paso County Elections Department. https://el-paso-county-elections.s3.amazonaws.com/documents/files/000/000/300/original/ELECTION_RESULTS_FINAL.pdf?1450312070.
[20] “2018 Annual Community Benefit Report.” 2018. El Paso Children’s Hospital. https://elpasochildrens.org/wp-content/uploads/2018/11/epch_communityreport_2018_small.pdf.
[21] Flores, Aileen B. 2015. “Taxpayers Still Owe $116M for Construction of El Paso Children’s Hospital.” El Paso Times, May 27, 2015. https://www.elpasotimes.com/story/news/local/2015/05/27/taxpayers-still-owe-116m-construction-childrens-hospital/31261601/.
[22] Moorthy, Chetan, and Sadhana Chheda. 2020.
[23] “History of El Paso Children’s Hospital.” 2020. El Paso Children’s Hospital. 2020. https://elpasochildrens.org/about-us/.
[24] In many states, a “certificate of need” must be obtained before new healthcare facilities can be created. See Mercatus Center. 2015. “How State Certificate-of-Need (CON) Laws Affect Access to Health Care.” Medium. December 23, 2015. https://medium.com/concentrated-benefits/how-state-certificate-of-need-con-laws-impact-access-to-health-care-b8d3ec84242f for more. Certificates of need may slow the founding of hospitals in some areas, but they could also spur it when political will is low or absent.
[25] Moorthy, Chetan, and Sadhana Chheda. 2020.
[26] Given federal/state separation of powers, it is very unlikely that the federal government would be directly involved at this step
Variations on the Author
Get PDF“Variations on the Author” discusses two of Eduardo Coutinho’s recent films (Um Dia na Vida, from 2010, and Últimas Conversas, posthumously released in 2015) and their contribution to the general question of documentary authorship. The director’s filmography is characterized by a consistent yet self-effacing form of authorial self-inscription: Coutinho often features as an interviewer that rather than express opinions propels discourses; an interviewer that is good at listening. This mode of self-inscription characterizes him as an author who is not expressive but who is nonetheless markedly present on the screen. In Um Dia na Vida, however, Coutinho is completely absent form the image, while Últimas Conversas, on the contrary, includes a confessional prologue that moves the director from the margins to the center of his films. This article examines the ways in which these works stand out in the filmography of a director who offers new insights into the notion of cinematic authorship
Compulsory COVID-19 Vaccination? : Only as a Policy of Last Resort
No full textPhoto by Daniel Schludi on Unsplash
The debate regarding the limits of individual liberty and the state’s obligation to promote the common welfare and to protect its citizens is too important to be left to extremists. As more vaccines make their way through Phase III trials[1] and the question of compulsory vaccination presents itself, leaders must address the short- and long-term implications of requiring a specific medical intervention (vaccination) as a condition of community membership[2] versus as a condition of participation in school, work, or other activities. Transparency and openness to compromise are paramount. Broad buy-in on policy which touches such a fundamental human interest, the right of individuals to control their own bodies, is crucial to restore or ensure continued trust in science and American institutions and to prepare the country to combat future problems. This paper argues that universal compulsory vaccination (by state or county) should be implemented only as a policy of last resort. Public health officials must first weigh all reasonable alternatives, including educational initiatives, tax credits (rather than penalties), and variously-formulated requirements for vaccination of subsets of the population as a condition of participation in public activities.
HISTORY
In 1902, the Board of Health of Cambridge, Massachusetts, using authority delegated to it by the state legislature, required smallpox vaccination or revaccination for all healthy residents above the age of 21. Those who refused were subject to a five dollar per day fine. A pastor by the name of Henning Jacobson was prosecuted, fined, and ultimately ordered committed for refusing to pay that fine. In Jacobson v. Massachusetts, Justice John Marshall Harlan wrote the majority opinion for a seminal 7-2 Supreme Court decision upholding the right of the state to compel vaccination under certain circumstances.
Underpinning the Court’s conclusion was a tense and uncertain compromise between the tenets of social-compact theory and theories of limited government.[3] Although Harlan wrote that the constitution guaranteed no “absolute right in each person to be, at all times and in all circumstances, wholly freed from restraint,”[4] he underscored that the state’s police powers were limited. The state must always (1) consider the necessity of their exercise, defining its objective as narrowly as is feasible, (2) use “reasonable means” to pursue that objective, (3) impose only burdens that are proportionate to the expected benefit, and (4) avoid inflicting “cruel and inhuman harm” on any person.[5] Harlan implied that state legislatures were to have wide discretion to deliberate these issues and perform benefits/burdens calculations themselves.
Jacobson legitimized compulsory vaccination legislation then on the books in 11 states, but such legislation was seldom used. Most states vigorously promote vaccination for various diseases through educational initiatives or require it for students seeking to enroll in public school (always with medical and usually with religious or philosophical exemptions) or for certain subsets of the population, like healthcare professionals working in select hospitals and nursing homes.[6] Mandatory public school vaccination has withstood court challenge,[7] but mandatory vaccination of healthcare professionals, when no non-medical exemptions are granted, is of ambiguous legal status.[8] Since 2000, some states have passed versions of the Model State Emergency Health Powers Act (MSEHP), granting their governors the authority to declare public health emergencies and thereafter to compel vaccination of the public, using the National Guard if necessary.[9] However, no qualifying crisis scenario presented itself until this year. Governors contemplating COVID-19 vaccination requirements are likely first to develop plans which would make vaccination a condition of participation in various activities, a strategy that, although still controversial, is not the primary subject of this paper. It is unlikely that the federal government would get involved. Though it imposes some vaccine requirements for those wishing to immigrate or join the military, it has never established broader vaccination policy, and it is unclear whether it could use its authority, e.g., under the constitution’s Commerce Clause, to do so.[10]
PRACTICAL AND ETHICAL CONSIDERATIONS
After FDA approval of a vaccine for COVID-19, it is conceivable that some states, or some legislators within them, spurred on by medical and other commentators,[11] will wish to compel vaccination not only of children in public schools or of healthcare professionals working in certain settings, but of at-risk groups or of all citizens under their jurisdiction. While it is extremely unlikely that they would authorize the use of force, they might impose fines or tax penalties, as the Board of Health of Cambridge, Massachusetts did at the turn of the 20th century. Such moves are likely to be challenged in court, and if they make their way to the Supreme Court, it is not altogether clear how the Court would rule or whether its ruling will be delivered in time to be relevant. Compulsory vaccination of specific groups, e.g., the elderly or those living in crowded housing or in high-spread neighborhoods, who might be disproportionately Black or Hispanic, [12] could be struck down on the basis of the 14th Amendment’s guarantee of equal protection, which Jacobson never addressed. Although Jacobson has been cited in more than seventy other cases, most dealing with other non-health- or health-related uses of police powers,[13] and is well-established precedent, the Court has acknowledged several other rights in the intervening years which might lead it to overturn Jacobson. These include a right to privacy[14] and a right to refuse unwanted medical treatment.[15] Although it has always balanced these rights against state interests,[16] which certainly include preventing the spread of disease, the communitarian spirit of the Progressive Era has given way to a polarized electorate that includes growing numbers of uncompromising liberty enthusiasts. All fifty states have vaccination mandates for school attendance and several states mandate vaccines for healthcare workers demonstrating Jacobson’s precedent has survived the development of privacy rights and rights to be free from unwanted bodily intrusions in the healthcare context. The issue of whether Jacobson has survived legal progress to the degree that universal compulsory vaccination (rather than school or workplace mandates) would be acceptable remains unanswered. The Court now includess several self-described staunch defenders of individual liberty and autonomy who may not give as much weight to public health measures that are seen to infringe upon fundamental freedoms.[17]
But even if the Court were to uphold the essence of Jacobson, the particulars of the case before it would determine whether compulsory COVID-19 vaccination could proceed. The current Court might defer less to the determinations of state or local public health agencies and apply higher or different standards for necessity, reasonable means, proportionality, and avoidance of “cruel and inhuman harm” than did Harlan’s majority. On the basis of fairness and minimizing individual burden, it could determine that compulsory vaccination is permissible only when the vaccine is offered at no expense at properly-spaced clinics or other centers, which would be infeasible for many states. The Court’s recent backing of a religious challenge to limits on gatherings that New York imposed in response to a second surge of COVID-19 infections in October is a tangible indication that the Court might require states to offer religious or philosophical exemptions.[18] The Court may strike down a universal compulsory vaccination policy if it does not believe that a state has done enough to promote voluntary vaccination first, especially considering the additional tools states have at their disposal today. Given the probable impact on public order or possible setbacks for vaccines if something should go terribly wrong, a decision against broad compulsory vaccination on the grounds that other policies were not exhausted first may be beneficial to social stability.
It is also important to remember that vaccines do carry some risks – hence the existence of a National Vaccine Injury Compensation Program.[19] Many bioethicists downplay the risks of vaccination for the non-immunocompromised. Alberto Giubilini goes further. He has compared the decision not to be vaccinated to tax evasion and has justified compulsory vaccination on the basis of fairness: shared risk for shared reward, rather than harm prevention.[20] But even if his argument demonstrated that compulsory vaccination were morally permissible or even morally obligatory, it does not show that compulsory vaccination is good public policy, especially when the vaccine in question is new. I argue that the consequences (loss of social cohesion and trust in the scientific community) would outweigh the benefit of reduced viral spread.
That opposition to vaccination is growing[21] and that more than 40 percent of Americans indicate they would not consent to receive even a cost-free COVID-19 vaccine[22] should be the starting point for government vaccination policy. While the state has a responsibility to educate its citizens on issues pertinent to the public welfare and to override them when the consequences of not doing so are likely to be disastrous, it must first make good-faith attempts to address all concerns voiced by its citizens, making accommodations when possible. A minority should not be ignored simply because it is a minority, and if it is a large minority, the implications of overriding it for social cohesion and for democracy, must be given attention. Some warn that the country is more polarized now than at any time since the Civil War,[23] and in the age of mass media and social media, compulsory vaccination is likely to become a flashpoint, like mask mandates and social distancing before it.[24] But unlike those mandates, universal compulsory vaccination threatens or comes close to threatening a fundamental liberty interest and is likely to encounter even fiercer resistance, especially if the mandate comes from the federal government.
Although Joe Biden’s victory in the presidential election may improve public confidence in a vaccine and in the FDA, it is possible that some will still be uncomfortable with how quickly a COVID-19 vaccine was developed relative to other vaccines.[25] They may prefer others take it before they do, particularly if the vaccine receives emergency use authorization.[26] Pluralism and democracy are virtues, and it would be unethical to disregard the concerns of this group, especially as they are not altogether unreasonable. Circumstances may enable broad circumvention of this issue. Vaccine roll-out will not be instantaneous, and demand for it may be high enough that governments must use distribution prioritization schemes (granting access to healthcare workers, the elderly, other essential workers, etc. first). Over time, if these populations do well, others may become convinced and choose to be vaccinated.
Alternatively, individual states or the federal government might attempt to push them along, e.g., by denying them access to post offices, schools, or other public property or requiring them to quarantine if they travel but have not received a vaccine, that is, requiring vaccination as a condition of participation in public activities. Whether this will bring the total number of vaccinated people up to the level necessary to achieve herd immunity will depend on how effective the vaccine is and whether its protection is permanent.[27] Paradoxically, if the vaccine is less effective or boosters must be given, more people will need to receive it, but the courts, performing a risk/benefit analysis, are less likely to uphold a mandate. It would also be less ethical for them to do so, as the potential for harm and burden imposed would be greater.
Finally, many people who support or are ambivalent to vaccination in general will oppose compulsory vaccination for COVID-19, either because they oppose the exercise of this type of state power in principle or because they do not believe the necessary threshold has been met. These people may worry that the state will begin to implement measures like compulsory vaccination when no crisis exists or fail to appropriately circumscribe the limits of what constitutes a crisis. As a recent example of executive overreach, President Trump once declared a national emergency over immigration at the southern border in order to bypass the legislature and free up spending for a wall (a campaign promise).[28] Although the WHO, itself not immune from political influence, publishes parameters for staging pandemics,[29] it does not (and cannot) describe a uniform policy on what precise levels of spread, hospitalization, or mortality merit what type of response. There is no law requiring governors or presidents to declare public health emergencies only when case-specific WHO or similar criteria are met.
SUMMARY & RECOMMENDATIONS
It would be difficult to formulate a sustainable, cost-effective universal compulsory vaccination policy that stands up to court scrutiny and strikes a balance between autonomy, respect for bodily integrity, and public health that most people will accept and that does not further marginalize disadvantaged groups. In light of this, I argue that states should have tiered goals for vaccination and use interventions of varying strength and scope to achieve each, communicating transparently to the public and giving heavy weight to people’s concerns.
The marginal benefit of pursuing each, more ambitious goal decreases as the less ambitious goals that are subsumed into them are realized. The harms associated with pursuing them may be great. The goal of preventing the overwhelming of medical infrastructure is the most clearly ethical. Next, herd immunity is also justifiable if achieved with proper measures. Near-universal vaccination would be the most difficult to justify based both on a decreasing marginal value of moving beyond herd immunity and the significant level of government intrusion. The goals represent a paradox: the least ambitious but most widely-accepted goal (flattening the curve) warrants the most intrusive government policy, yet the most intrusive policy would go beyond the stated goal and should not be implemented because it is ethically imperative that the state use the least restrictive means to achieve the goal. The most ambitious goal (near-universal vaccination) does not justify universal compulsory vaccination despite being out of reach absent a universal mandate. The support of the public is crucial as a check on government authority and to ensure that the least restrictive means are used to pursue legitimate ends. The public’s input for precisely tailoring vaccination policy to ensure that it is both successful in achieving its goal and ethical will be paramount. What follows is a general framework based on a careful consideration of the issues outlined in the preceding sections of this paper.
1. Most ambitious and most controversial: a near-universal vaccination rate
This goal is ethical insofar as it prevents the most deaths, which is a proper government interest. However, to achieve it, intrusive policies, including any sort of mandate, are not warranted because a) the marginal benefit of moving past herd immunity is low, b) the goal overreaches widely-accepted government action and so puts government too far out of step with citizens, and c) they would undermine public trust and autonomy. In order to achieve this goal, to minimize morbidity and mortality, the state (individual US state or local governments) should restrict its activities to the active promotion of vaccination in the public school system or via “community conversations” and media campaigns. It should take steps to minimize misconceptions about vaccine safety, including describing the robust vaccine monitoring and approval process. The state must be careful to expend a proportionate amount of resources on this effort, not shifting funding away from other important functions. The federal government should restrict its activity to moral leadership and funding these educational initiatives and vaccine development.
2. Moderately ambitious and less controversial: herd immunity
To reduce “community spread” to near zero, it is ethical for the state also to implement well-precedented coercive measures like vaccination requirements for school enrollment and for certain healthcare professionals (granting standard exemptions). During a crisis, it may consider eliminating these exemptions, subsidizing vaccination, and establishing honor-system quarantine requirements for those unvaccinated citizens who travel to other states and return. This is in addition to mask mandates or curfews which reduce spread and, because of their unpopularity, may encourage citizens to choose to be vaccinated to bring the crisis to a speedier end. The federal government should ideally restrict its activity to adding to the vaccination requirements for new or continued military service, regulating industries which receive federal funds, imposing international travel bans, as well as providing moral leadership, funding for state initiatives, and guidelines for regional response uniformity. However, depending on the nature of the crisis, the federal government may assist in regulating interstate travel. Herd immunity is a realistic and ethically justified goal, yet it is closer to the limit of tolerable government authority. Because the public might not accept it, it would be best for social cohesion if it were achieved without a universal compulsory mandate (which would also overshoot the goal).
3. Least ambitious and widely accepted: immunity levels sufficient to prevent the overwhelming of medical infrastructure
Partially because this is the most widely-accepted goal, government should be able to use more intrusive means to achieve it. It balances government interests, autonomy, economic interests, and liberties, and it would add to social cohesion and represent respect for myriad views on what is beneficent. As such, it would warrant the most intrusive policies, including universal compulsory vaccination, yet the government must always use the least restrictive means to achieve an end. If, once it has made vaccines available free of charge (and provided tax credits as an incentive), the state has not met this goal, it is ethical for it to consider implementing more coercive tactics. These range from permitting insurance companies to charge higher premiums for those who refuse vaccination to establishing “immunization cards” (attending to the associated privacy and discrimination concerns) and requiring the presentation of such cards before use of state facilities or services, like public transportation, or for avoiding enforceable quarantine after travel. Presentation of an immunization card should not be a requirement for welfare eligibility, including Medicaid nursing home assistance. If, after some significant period, these tactics fail, the state may consider compulsory vaccination. States should solicit expert and public input for the design of the policy, which may be rolled out from county-to-county based on infection and hospitalization rates. Such a policy should have broad opt-out provisions, at least to begin with, and there should be a mechanism to overturn it by referendum. Imprisonment should not be one of the considered penalties, but, in accordance with Jacobson, paying a fine for failure to become vaccinated should be an option. The federal government should avoid attempting any vaccine mandate of its own, though it may consider withholding highway or other funds from states which refuse to implement even the most basic measures to control the disease’s spread. Once the goal of preventing the overwhelming of the medical infrastructure is met, the compulsory vaccination policy should be reconsidered with an eye to limiting it to school or sector-specific mandates, as these have widespread public acceptance.
CONCLUSION
Universal compulsory vaccination should be part of the conversation on COVID-19 now only insofar as the purpose is informing citizens that it may eventually be a necessity and that pertinent plans must be developed in advance. Despite rising case counts, it is inappropriate for the release of a vaccine to be immediately accompanied by policies requiring members of the general public to receive that vaccine. Every reasonable alternative must be exhausted before such policies are implemented, not only because they touch an issue so central in a free society, the right of individuals to make decisions about what is done to their bodies, but also because of the practical obstacles, including inevitable legal challenges and widespread anger and resentment that could undermine the country’s ability to effectively combat this crisis and the crises that lie ahead.
[1] Corum, Jonathan, Sui-Lee Wee, and Carl Zimmer. 2020. “Coronavirus Vaccine Tracker.” The New York Times, November 13, 2020, sec. Science. https://www.nytimes.com/interactive/2020/science/coronavirus-vaccine-tracker.html.
[2] This paper uses “compulsory vaccination” to apply to vaccination mandated for all in the community with fines as an enforcement tool and not to vaccination of a narrower group as a requirement for participation in school, the workplace, or other public spaces and activities.
[3] Gostin, La
Humanizing the Physician-Patient Relationship: How Gift-Giving and -Receiving Can Be Ethical
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INTRODUCTION
Gift-giving by patients or their families to physicians has happened since there were patients and physicians, and in many places, it’s still quite common. It’s also potentially problematic, and the why and how of it offer important insight into the physician-patient relationship and human relationships more broadly. Yet ethicists, regulators, and the public have not paid much systematic attention. In the United States, no federal or state legislation directly addresses it. Only in the past two decades did the American Medical Association (AMA) release guidance to physicians about it. That guidance, which permits physicians to accept certain gifts by certain patients under certain circumstances, namely, when it will not influence their medical judgment or cause hardship to the gift-giver, is vague and incomplete – indeed, it’s all of 200 words.[1] Other physician professional organizations have little to add.[2] A few academics and opinion columnists have studied or reflected on the psychology of gift-giving and -receiving and recommended everything from categorical rejection of patient gifts[3] to erring on the side of accepting them, provided they are of modest value, and the motivation behind them can be discerned.[4] However, insufficient attention has been paid to the when and where of those gifts or the significance of clinic-, hospital- or other systems-level ethical safeguards.
ANALYSIS
When deciding whether they will accept a gift from a patient or their family, physicians must balance the possibility that the gift could cloud medical judgment, lead to favoritism, exploitation, and slippery slopes, or pressure other patients to give, and perhaps even debase the meaning of medical treatment, against the prospect that gift-giving could increase patient trust and satisfaction, as well as empower patients and respect their autonomy and culture.[5] Performing this harm-benefit calculation case by case is challenging and time-consuming. Unsurprisingly, many physicians opt simply to tell would-be gift-giving patients that they appreciate the sentiment, but, as a rule, they accept no gifts. I submit many physicians do this also because they are unaware of how meaningful giving a gift can be for patients or anyone in a disadvantaged position with respect to the gift recipient. They may also not know that there are simple accountability mechanisms they can institute that may prevent many of the possible adverse consequences of gift-giving and -receiving in the context of the physician-patient or physician-patient-family relationship. Unfortunately, many instances in which accepting a gift would have led to net benefit are foregone.
It is my belief a consensus could quickly be formed about which types of gifts would clearly be wrong to accept. Few would defend the physician who agrees to use a patient’s villa in the Bahamas or welcomes expensive jewelry or lewd photos. The timing and intent of a gift also matter. Few would forgive the physician who accepted even a modestly valuable voucher to eat at a patient’s restaurant while their eligibility for transplant was being debated or after they had run out of opioid painkillers and were denied a prescription renewal. On the other hand, I doubt even Charles Weijer or the College of Physicians and Surgeons of Prince Edward Island, which views accepting gifts from patients as “boundary crossing,”[6] would demand an orthopedic surgeon turn down the happy picture a pediatric patient drew after recovering from a hip injury and resuming sports. They are also unlikely to criticize an oncology team that graciously receives a fruitcake baked by the sister of an elderly cancer patient after the decision was made and agreed to, around Christmastime, not to initiate another round of chemotherapy.
These unlikely refusals may be because rejecting those gifts, all things considered, would seem cruel. But it might also be because there is disagreement about what constitutes a gift: whether it must be a tangible object (are heartfelt thank-yous and hugs not also “gifts”?) or whether it must be something that requires the physician actively do something, e.g., get on a plane. These disagreements about definitions may also partially underlie disagreements about practice. Suppose a patient in a sparsely populated, heavily wooded part of Maine takes it upon himself to offer a sack of apples from his orchard to his internist, who regularly waives fees for those who cannot pay them or will make a house call at any time of the night. In that case, the internist may not consider the apples a gift. He may not think of them as payment or re-payment either. They may exist in some in-between category, much like the knitted slippers brought in by a patient in whose culture “thank you” is seldom said.
But clearly, some things are widely perceived as gifts or to have substantial gift-like character. Should they, at least, be rejected? I don’t think so. The act of gift-giving and -receiving can be a sort of ritual and gradually lead to trust and closeness.[7] Perhaps a shy patient whose wife previously sent chocolates to his physician around Christmastime will come to see the physician as a part of his extended family. Perhaps he needs to do so to feel comfortable talking about his erectile dysfunction. Gifts can be expressions of caring.[8] Perhaps an elderly Texan patient imagines her younger physician, whom she has known for thirty years and often sees at the grocery store, as her son and asks to prepare a homecoming mum (traditionally a chrysanthemum flower corsage) for his children’s school dance. Perhaps doing so will give her purpose, make her feel useful, as all her own children have moved away. Giving gifts may also provide patients with a sense of control and help them feel as if less of a power imbalance exists between them and their physician. Perhaps a young judge, who is not used to not being in control, and was previously misdiagnosed with rheumatoid arthritis, is now struggling to come to terms with his Lupus. Perhaps giving the physician who made the correct diagnosis a moderately-priced bottle of scotch restores his confidence or sense of pride.
Gifts are also undoubtedly important to the recipient. When medical providers receive a gift, they may interpret it as a sign that they are valued. While it would be wrong to practice medicine to receive gifts or expect them, there are times, like when ERs and ICUs are overwhelmed because of a viral pandemic,[9] which threatens the will to continue working, and most anything (within reason) that bolsters resolve can be considered good. There is also no obvious distinction between the satisfaction physicians normally receive on seeing their patients recover or being thanked or smiled at and what they feel when they receive a small or “token” gift, like a plate of homemade cookies.
The point is that the physician-patient relationship is a human one. Many advocate it should be personal, that physicians should be emotionally invested in their patients, care about and have compassion for them in ways that professional oaths do not fully capture.[10] This dynamic is particularly important in primary care or when the physician-patient relationship continues for long periods. According to one Israeli study, many patients even wish for a relationship with their physician akin to friendship. Those who felt they had such a relationship were more satisfied with their care than those who believed the relationship was business-like.[11] The precedent for this “friendship between unequals” goes back at least to the time of Erasmus, some five hundred years ago.[12] There may be good reasons for physicians to draw the line before friendship, but if accepting certain gifts builds intimacy, and that intimacy does not cross over into an inappropriate relationship, e.g., a sexual or romantic relationship, and if it has the chance to improve healthcare outcomes through improved mood or early disclosure of problems, I think it should be done. Physicians have a prima facie duty to do good for their patients.[13] Most physicians want to do good for their patients and respect their traditions and preferences. I suspect that accepting the gifts from the patients in the examples above would do a lot of good, or at least that rejecting them could do significant harm, including making them or their families feel estranged from the medical community, impeding future care.
Physicians might be more comfortable accepting gifts if receiving gifts would not subject them to scrutiny or penalty. They also may feel better if they knew that receiving gifts would not harm their patients and that rejecting gifts might. They should document all gifts they receive.[14] This will enable them to detect if gifts from a particular patient are increasing in frequency or lavishness or changing markedly in character, which could warrant attention. I maintain this “Gift Log” should be maintained in common with everyone at the clinic or in the relevant hospital department and potentially made available to hospital administration for audit. Investigation might be necessary if a gift is given (and accepted) with no explicable context, e.g., not near holiday season or after a treatment milestone is achieved. When possible, gifts should be shared communally, such as placing fruit baskets or chocolates in the staff room. Other gifts, like artwork, can be displayed on the walls.
Others should be encouraged to hold physicians accountable if they feel patients who have given gifts receive preferential treatment, including something as seemingly small as priority for appointment bookings. Appearances matter and even the appearance of impropriety can affect the public’s trust in medicine. The culture of medicine has already changed such that nurses now reproach physicians they feel violate the standard of care,[15] and this would be an extension of that trend. Depending on the set-up of the practice, a staff member can be designated for receiving gifts and politely declining those that ought to be declined. Staff members should tell patients, who give gifts in full view of other patients, that they cannot do so in the future. Physicians can politely rebuff patients who wish to give inappropriate gifts, or gifts at inappropriate times and suggest they donate to charity instead. Medical practices and hospitals should develop a gift policy in consultation with staff and patients to avoid needlessly rejecting gifts that benefit both doctor and patient and to avoid pressuring patients into giving gifts. The policy should be flexible to account for the crucial human element in any provider-patient relationship and the cultural nuances of any practice setting. Psychiatrists, who work with particularly vulnerable patients, may need to be more vigilant when accepting gifts.[16]
CONCLUSION
Though we tend to think health innovation occurs in urban medical centers and spreads outward, there may be something big-city physicians can learn from their rural colleagues about personalized patient-physician relationships. The value of gifts is only one example. Normalizing the acceptance of patient gifts in appropriate restricted circumstances has the added benefit of shining a spotlight on the acceptance of patient gifts in dubious ones. By bringing an already fairly common practice into the open and talking about it, we can create policies that respect patients as persons, prevent abuse, and deconstruct the stereotype of the austere and detached physician. While there is no reason to think that gift-giving would get out of control if appropriate safeguards are put in place, the medical community can always re-evaluate after a period, or an individual medical practice can re-evaluate based on the circumstances of their practice environment. Gift-giving, especially when gifts are of small monetary value, should be recognized as a culturally appropriate gesture with meaning far beyond that monetary value. It is best governed by reasonable gift-giving policies, not banned altogether.
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[1] Council on Ethical and Judicial Affairs. “Ethics of Patient-Physician Relationships.” In AMA Code of Medical Ethics, 11. Chicago: American Medical Association, 2021. https://www.ama-assn.org/sites/ama-assn.org/files/corp/media-browser/code-of-medical-ethics-chapter-1.pdf.
[2] Sulmasy, Lois Snyder, and Thomas A. Bledsoe. “American College of Physicians Ethics Manual.” Annals of Internal Medicine 170, no. 2_Supplement (January 15, 2019): S1–32. https://doi.org/10.7326/M18-2160; Committee on Bioethics. “Pediatrician-Family-Patient Relationships: Managing the Boundaries.” Pediatrics 124, no. 6 (December 1, 2009): 1685–88. https://doi.org/10.1542/peds.2009-2147.
[3] Weijer, Charles. “No: Gifts Debase the True Value of Care.” Western Journal of Medicine 175, no. 2 (August 2001): 77.
[4] Lyckholm, Laurie J. “Should Physicians Accept Gifts From Patients?” JAMA 280, no. 22 (December 9, 1998): 1944–46. https://doi.org/10.1001/jama.280.22.1944; Spence, Sean A. “Patients Bearing Gifts: Are There Strings Attached?” BMJ 331, no. 7531 (December 22, 2005): 1527–29. https://doi.org/10.1136/bmj.331.7531.1527; Gaufberg, Elizabeth. “Should Physicians Accept Gifts from Patients?” American Family Physician 76, no. 3 (August 1, 2007): 437; Caddell, Andrew, and Lara Hazelton. “Accepting Gifts from Patients.” Canadian Family Physician 59, no. 12 (December 2013): 1259–60.
[5] See above commentators and Drew, Jennifer, John D. Stoeckle, and J. Andrew Billings. “Tips, Status and Sacrifice: Gift Giving in the Doctor-Patient Relationship.” Social Science & Medicine 17, no. 7 (January 1, 1983): 399–404. https://doi.org/10.1016/0277-9536(83)90343-X.
[6] College of Physicians and Surgeons of Prince Edward Island. “Respecting Boundaries.” Accessed April 4, 2021. https://cpspei.ca/respecting-boundaries/.
[7] The Atlantic’s Marketing Team. “What Gifting Rituals from Around the Globe Reveal About Human Nature.” The Atlantic, 2018. https://www.theatlantic.com/sponsored/hennessy-2018/what-gifting-rituals-around-globe-reveal-about-human-nature/2044/.
[8] Parker-Pope, Tara. “A Gift That Gives Right Back? The Giving Itself.” The New York Times, December 11, 2007, sec. Health. https://www.nytimes.com/2007/12/11/health/11well.html.
[9] Harlan, Chico, and Stefano Pitrelli. “As Coronavirus Cases Grow, Hospitals in Northern Italy Are Running out of Beds.” Washington Post. Accessed April 4, 2021. https://www.washingtonpost.com/world/europe/italy-coronavirus-patients-lombardy-hospitals/2020/03/12/36041dc6-63ce-11ea-8a8e-5c5336b32760_story.html.
[10] Frankel, Richard M. “Emotion and the Physician-Patient Relationship.” Motivation and Emotion 19, no. 3 (September 1, 1995): 163–73. https://doi.org/10.1007/BF02250509.
[11] Magnezi, Racheli, Lisa Carroll Bergman, and Sara Urowitz. “Would Your Patient Prefer to Be Considered Your Friend? Patient Preferences in Physician Relationships.” Health Education & Behavior 42, no. 2 (April 1, 2015): 210–19. https://doi.org/10.1177/1090198114547814.
[12] Albury, W. R., and G. M. Weisz. “The Medical Ethics of Erasmus and the Physician-Patient Relationship.” Medical Humanities 27, no. 1 (June 2001): 35–41. https://doi.org/10.1136/mh.27.1.35.
[13] Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. 7th edition. New York: Oxford University Press, 2012.
[14] Caddell and Hazelton, 2013.
[15] See, e.g. Peplau, Hildegard E. “A Glance Back in Time: Nurse-Doctor Relationships.” Nursing Forum 34, no. 3 (1999): 31–35. https://doi.org/10.1111/j.1744-6198.1999.tb00991.x and Ahmad, Ahmir. “The Doctor-Nurse Relationship: Time for Change?” British Journal of Hospital Medicine (2005), September 27, 2013. https://doi.org/10.12968/hmed.2009.70.Sup4.41642.
[16] Hundert, Edward M. “Looking a Gift Horse in the Mouth: The Ethics of Gift-Giving in Psychiatry.” Harvard Review of Psychiatry 6, no. 2 (January 1, 1998): 114–17. https://doi.org/10.3109/10673229809000319
Recruiting Psychology Students to Participate in Faculty/Department Research: Ethical Considerations and Best Practices
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INTRODUCTION
Introductory psychology courses often have high enrollments and present department faculty and staff with a large pool of potential research subjects.[1] At many institutions, professors make participation in department research a course requirement or offer extra credit as a participation incentive. Early participation is thought to benefit students by exposing them to the research process and to techniques they may encounter in the future.[2] Many students who choose to participate are pleased with their experience and feel more connected to their departmental community.[3] Nevertheless, the unique faculty-student relationship raises important questions about the ethics of student participation in faculty or department research.[4]
ANALYSIS
The primary issues are informed consent and voluntariness. Students should decide to participate in research of their own free will, and their participation should be a reflection of their own values and desires.[5] However, faculty are in a position of authority over students, who may see their approval as crucial for academic and professional advancement. Students may fear that declining opportunities to participate in department research will leave them struggling to complete time-consuming “alternate assignments,” prevent them from obtaining strong letters of recommendation, or earn them a negative reputation in the department, potentially impacting their performance in future courses. These problems could be exacerbated if research participation is not anonymous or if it becomes synonymous with what a “model student” would do.[6] Even perceived pressure can impact a decision to participate, and there is some evidence that younger students and students of color perceive more pressure to participate than their peers.[7] This issue is significant because it can skew the subject pool and place a disproportionate burden on already disadvantaged groups. In addition, it threatens to undermine students’ trust in the research enterprise and their relationship with professors outside of research.
Voluntariness is also threatened by offering extra credit as an incentive for research participation. Extra credit may constitute undue inducement: it may be so attractive to students that they will do more than what is appropriate to get it. Nearly 85 percent of students at one large state university said they would participate in research for as little as a 3-5 percent boost to their final averages.[8] While this may be a problem with student culture rather than extra credit itself, it is something that faculty must take into account.
Moreover, because of circumstances outside their control, some students may be denied either the opportunity for extra credit (if no comparable alternatives are available) or the educational benefits associated with research participation. Some students do not have time to participate in research because they work multiple jobs or have other commitments, including travel for sports. Some students are left-handed or have braces and so are ineligible for many studies using functional magnetic resonance imaging (fMRI) electroencephalography (EEG) and other, similar techniques.[9]
But much of this has been discussed in the literature, and with the help of the Office for Human Research Protections (OHRP), some universities have even developed semi-satisfactory solutions.[10] I wish to expand on the solutions I believe are most important, as well as to propose others rooted in my belief that soliciting students to participate in research is only ethical if they derive real, long-term educational benefit from it. To my knowledge, no university has implemented all of these measures.
First, psychology departments should ensure there are sufficient and diverse research opportunities available for all students who wish to participate. Not only does this promote fairness for students with packed schedules, it increases educational benefit by exposing students to different research techniques. Another means of ensuring that students derive personal benefit from research participation is to require “experimental debriefs” soon after participation. Debriefs should include a Q&A session.
If professors award extra credit for research participation, they must also offer alternate assignments that require the same amount of time and energy to complete. Professors should advertise alternate assignments vigorously and emphasize that students who choose to complete them will not be viewed negatively by course faculty or others in the department. Perhaps a committee of students and faculty can come together to decide what an appropriate amount of extra credit might be, or whether extra credit should be off the table altogether.[11] The answer will depend largely on institutional culture. If sufficient participation can be achieved through advertising, if extra credit is not traditionally offered in other courses for other assignments, or if faculty feel comfortable making research participation a course requirement, extra credit for research participation should probably not be offered. To ensure participation remains voluntary throughout the research process, students who withdraw from a study for any reason should receive the same credit or extra credit as students who complete that study. Most studies are short and require little effort, so it is unlikely that students will abuse this policy.
To minimize the possibility of coercion or undue influence, and to allow professors to fulfill their primary duty to students (as teachers), students should book their research participation or alternate assignments through an online, department-wide system that course professors agree not to regularly monitor for student participation.[12] Students should not be able to participate in research that their professor directly oversees. Exceptions may be made for small departments to ensure that sufficient studies are available. This system could tabulate points derived from research participation or alternative assignments and update course professors on students’ progress before grades are due. While implementation may be costly and complicated for larger departments, they are the most likely to have the requisite resources and manpower.
Transparency is key. Universities should publish a general policy for research on students. While all proposed experiments filter through the same set of institutional review boards (IRBs), a published standard holds IRBs accountable and motivates them to explicitly incorporate consideration of the outlined ethical issues into their initial and continuing reviews of relevant studies. It also helps ensure parity and equal protection for student subjects across departments.
The ethical rationale for each of these safeguards should be explained to students. They should understand what it means to give informed consent in the context of a power differential and what might be an inappropriate incentive for participation in research. Despite the widely acknowledged importance of research ethics, it receives little attention in introductory courses. Even if some students do go on to take research methodology courses, where these issues are properly fleshed out, most will not, and asking them to participate in department research studies, using “exposure to the research process” as a justification, cannot be ethically done without including a discussion of this key component of research. Moreover, frank discussions of these issues may influence institutional/department culture such that students who choose not to participate feel less like they are “letting down” their professors or that they are simply “too sensitive.” Perhaps the possible racial differences in perceived pressure to participate will diminish as well.
One might argue that college students are not truly so vulnerable a population. Unlike children, they are capable of performing their own risk-benefit analyses. Theoretically, it should not matter if they are asked to participate in research studies run by their professors or if they can earn a marginal amount of extra credit by doing so; existing informed consent standards already account for these and other issues likely to arise. Furthermore, unlike prisoners, students cannot be considered a “captive” population. They are free to enroll in other courses, to “vote with their feet.” And even if they were as vulnerable as children or prisoners, it does not seem reasonable to require that they derive direct benefit from research participation because psychology research seldom poses more than minimal risk. This actually protects college students more than children[13] and, in some ways, more than prisoners.[14]
However, college students are susceptible to peer pressure and depend on the approval of their mentors, who can double as research investigators. It is unreasonable to expect them to challenge a system erected by those with authority over them. Without departmental efforts to ensure students personally benefit from research participation, they are nothing more than a population of convenience, which is unjust.[15]
CONCLUSION
It is crucial that all universities acting as research institutions prioritize the integrity of the research enterprise and the professor-student relationship. Students should be free to participate in faculty or department research if they so choose – there’s benefit to be had! – but it must really be them doing the choosing.
[1] Adair, J. G. (2001). Ethics of psychological research: New policies; continuing issues; new concerns. Canadian Psychology/Psychologie Canadienne, 42(1), 25–37. https://doi.org/10.1037/h0086877
[2] Bowman, L. L., & Waite, B. M. (2003). Volunteering in Research: Student Satisfaction and Educational Benefits. Teaching of Psychology, 30(2), 102–106.
[3] Cartmell, A. (2016). Students as research participants: A study of their experiences [Ph.D., Capella University]; Plaut, E. (2020, October 24). Dartmouth Psychology’s “T-Point” Program (G. Moorthy, Interviewer) [Telephone].
[4] Adair, J. G. (2001); Bartholomay, E. M., & Sifers, S. K. (2016). Student perception of pressure in faculty-led research. Learning and Individual Differences, 50, 302–307. https://doi.org/10.1016/j.lindif.2016.08.025; Office for Human Research Protections (2011b). Chapter 6: Special Classes of Subjects. In Institutional review board guidebook. Retrieved from http://wayback.archive-it.org/org-745/20150930182815/http://www.hhs.gov/ohrp/archive/irb/irb_chapter6.htm
[5] University of Waterloo: Office of Research Ethics. (2014, January 28). Conducting research in classes or with students as participants. UWaterloo.Ca. https://uwaterloo.ca/research/office-research-ethics/research-human-participants/pre-submission-and-training/human-research-guidelines-and-policies-alphabetical-list/conducting-research-classes-or-students-participants
[6] Ibid.
[7] Bartholomay, E. M., & Sifers, S. K. (2016).
[8] Midzinski, A. L. (2010). Students’ Perceptions of Coercion in Research [Master’s Thesis, Utah State University].
[9] Plaut, E. (2020, October 24).
[10] Examples include the University of Waterloo, Boise State University, the Metropolitan State University of Denver, the University of Kentucky, etc.
[11] Bartholomay, E. M., & Sifers, S. K. (2016). 303.
[12] Dartmouth College. (2017). PSYC 001: Introductory Psychology Course Syllabus. Hanover, NH: Thalia Wheatley, Paul Whalen, Bill Kelley & Todd Heatherton.
[13] 45 CFR § 46.306
[14] 45 CFR § 46.404
[15] National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. Retrieved from https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.htm
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Putting Patient Concerns on the Policy Agenda: The Need for a Unified, Independent Patient Lobby
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INTRODUCTION
Currently, the interests of patients at most levels of policymaking are represented by a disconnected patchwork of groups focusing on disease, age, ethnicity, or gender, like Susan G. Komen, the AARP, and the NAACP. These groups compete with one another for funding and are ill-equipped to compete with groups representing the interests of healthcare professionals, pharmaceutical and medical device companies, hospitals, and insurance providers. The result is an imbalance – big health has more financing and power, resulting in healthcare policy that does not adequately reflect patient concerns, especially the concerns of poor or otherwise vulnerable patients. These big health groups also misrepresent patient concerns to further their own interests, and patients are seldom in a position to push back. While some suggest the creation of a unified, independent patient lobby to interface directly with policymakers and the public, it is not altogether clear how such a lobby could be formed or how to focus its efforts to have the intended impact.
ANALYSIS
Nearly all Americans will be patients at some point in their life, so patients are a diverse group. They have a range of unique interests informed by their disease, age, location, socioeconomic situation and, to some extent, political views. The differences that exist between individual patients are much greater than the differences between different pharmaceutical companies or even different physicians. But this does not mean that patients have nothing in common. Most patients have similar expectations about the confidentiality of their records or protections that should be afforded to them if their treating physician asks them to participate in a research trial. They want to be able to receive care at the nearest emergency department and to choose their doctors. They all hate surprise medical billing, and most are troubled by the high price of prescription drugs.
A strong patient lobby might be able to successfully pressure Congress into taking action on these issues, or at least help advance the conversation by serving as a counterweight to the influence of other lobbies. The 2001 Bipartisan Patient Bill of Rights, sponsored by Senators John McCain (R, AZ) and Edward Kennedy (D, MA), would have expanded HMO coverage requirements and enabled employees to sue their employers if their claims were denied.[1] It failed after a sustained lobbying and public information campaign by insurance companies and employers, linked through the deceptively-named Health Benefits Coalition.[2] Several efforts to end surprise medical billing and promote price transparency have similarly failed or been stalled, in part because the American Hospital Association (AHA) complained that the changes would be too difficult to implement during the COVID-19 pandemic.[3] The Affordable Care Act (ACA) enacted some popular changes, including an elimination of coverage exclusions for people with pre-existing conditions, closure of the Medicare Part D “donut hole,” and expansion of coverage to age 26.[4] A patient lobby might have been able to secure more benefits, e.g., coverage requirements for dental, vision, and mental health services.
But the need to protect the ACA may be a better impetus for the formation of a strong patient lobby. The ACA has already been gutted by the Trump Administration’s actions to end certain insurance subsidies and Congress’s decision to repeal the penalty associated with the individual mandate, resulting in premium increases.[5] Cuts to funds that facilitate sign-ups on the exchanges also resulted in premium increases. The individual mandate is the subject of yet another Supreme Court challenge. If the legislation is struck down, already weakened protections for pre-existing conditions will be in jeopardy.[6] The changes to the ACA may galvanize patients to organize. Already, the general public’s interest in health policy has increased and appears to remain strong, unlike the waning enthusiasm following the failure of the Clinton healthcare plan.
Nevertheless, there are significant practical and cultural obstacles to the formation of a unified, independent patient lobby in the United States, and limits to what such a lobby could reasonably accomplish. Patients are a diverse group, and on a variety of issues, they can hardly be considered a group at all. The healthcare system consists of many interlocking parts. A provision to significantly benefit one group of patients, e.g., those on Medicaid, may not only come at the expense of insurance companies, but at the expense of other groups of patients. It is doubtful that most better-off patients would be willing to make sacrifices for the more disadvantaged among them. Research funding is limited, and if it is allocated to curing childhood leukemia, it may not be allocated to curing joint disease in the elderly. Then there is the problem of what is actually necessary to promote patient welfare. Patients often do not know exactly what will benefit them, whether their town really needs a Level IV neonatal intensive care unit or whether pharmaceutical companies should be able to advertise off-label drug uses. Even if they agree on general problems, they may not agree on solutions.
Patient groups are also susceptible to industry influence. The prestige of larger, well-established patient advocacy groups makes them attractive investments. According to a 2017 study in the New England Journal of Medicine, more than 80 percent of the largest 104 patient advocacy groups accepted money from drug, medical device, and biotechnology companies. Several groups did not disclose sources of funding or did not disclose what proportion of their budget came from each donor. Many also have company executives on their governing boards.[7] When diverse patient advocacy groups have banded together to increase their clout, industry has always been a part of the conversation. The results have been predictable.
For example, the American Cancer Society, the American Heart Association, and the American Diabetes Association, as well as various pharmaceutical and biotechnology companies are all members of the National Health Council, an organization founded to advocate for those living with chronic diseases and disabilities. These companies provide the majority of the Council’s funding and have strong representation on its board. In 2016, the Council came out strongly in favor of a deal between the FDA and pharmaceutical companies to speed the approval of new drugs as part of the reauthorization of the Prescription Drug User Fee Act. It also campaigned energetically for the 21st Century Cures Act, which was criticized by watchdogs as another attempt at weakening the FDA’s protection of consumers from dangerous drugs and medical devices.[8]It is possible that patients really believed they would benefit from these changes, and perhaps some will, but the changes will chiefly benefit the pharmaceutical industry, the legitimacy of which is boosted by its partnerships with patient groups.
Since the 1960s, medical culture has undergone dramatic changes. Patients are seen more as partners in health and well-being than passive slabs of clay. Their individual value systems and social context are incorporated into care plans. The result has been more satisfied patients, more cost-effective care delivery, and better health outcomes.[9] These productive partnerships could extend into policymaking by expanding the physician-patient dyad, or physician-patient-hospital triad, to include more actors. Keeping interest high and ensuring that the voices of some patients do not drown out the voices of others will be a challenge.
To begin to broaden patient groups at the local level, hospitals and clinics can host community meetings, where patients, healthcare providers, and administrators talk about the issues affecting them and brainstorm solutions. Trust grows over time. Perhaps patients can secure more forgiving medical debt repayment programs, reforms to arbitration procedures, more permissive visitation policies, or transparency in ethics and quality improvement committee deliberations and recommendations. Local patient groups can help steer conversations and exert gentle pressure, where necessary. They can ensure that hospitals and physicians do not blindly follow national guidelines but tailor them to meet the specific needs of the local population. They can publish lists of institutions or physicians who engage productively with them, potentially costing others goodwill and business.
State and national institutions involved in health policy creation can also attempt to incorporate patient voices into their deliberations. Unlike in Germany, where all Health Committee hearings feature testimony from the same several Spitzenverbände (national associations of various interests) and all meetings and briefs are made accessible online, US legislation is deliberated in a haphazard, back-and-forth process that involves a lot of back-room dealing.[10] That is, there is no single table at which American patient groups can sit to have far-reaching impact; they must establish themselves at multiple levels and learn to play a lobbying game that other interests have been playing a lot longer. But state public health departments in addition to the Centers for Medicare & Medicaid Services (CMS) and the Department of Health and Human Services (HHS) could establish public/patient advisory boards or include patient advocates as agenda setters in various sub-departments. Some short-term results could be more generous Medicaid eligibility and coverage requirements or accelerated Certificate-of-Need hearings for the creation of new medical infrastructure.
In the long-term, the institutionalized representation of patient voices at various places in the bureaucracy could provide the basis for the development of a unified patient lobby. These boards could vie for increased influence through membership in a formalized, state, regional, or national organization. Local patient advocacy groups could be incorporated as well.[11] After consolidation, the lobby might expand its purview and meaningfully pressure legislatures on issues like surprise medical billing, high prescription drug prices, and privacy protections. The lobby’s success may depend on its commitment to issues on which there is little disagreement between patients. To ensure the continued independence of the patient lobby, sunshine laws mandating funding transparency could be expanded.[12]
Importantly, this unified patient lobby could include existing patient advocacy groups that could continue to pursue their own goals independently, much as various pharmaceutical companies, hospitals, and physicians do outside of the Pharmaceutical Research and Manufacturers of America (PhRMA), the AHA, or the American Medical Association (AMA). The whole is greater than the sum of its parts: a unified patient lobby can (1) push for action on issues where patients generally agree, like surprise medical billing, (2) indirectly further the goals of each constituent organization, e.g., through a push for global increases in disease and disability research, and (3) slowly raise the level of public debate, encouraging and sustaining broader and more informed public attention to the health policy development process.
Ideally, a unified patient lobby would also elevate previously-unheard voices. As patients with various backgrounds and interests work with one another to achieve their common goals, they may find that they have other things in common as well. They may also see that improving the health of some parts of the population has important spillover effects for others. For example, healthy workers are more productive, and healthy parents can be more engaged in their children’s lives, setting them up for success. In the same way that the AARP has special divisions to promote the particular interests of its black and Hispanic members, an umbrella patient lobbying group could allocate some resources to promoting the interests of disadvantaged patients. Most importantly, however, it could create a tighter sense of community among patients, pushing society to become more compassionate and understanding.
James Morone would warn that creating mechanisms for increasing the representation of disaffected or marginalized groups is not a panacea. This “democratic wish” could begin a social and political process that ends in circumstances similar to those that initially brought it about: political stalemate.[13] But I argue that the stalemate is avoidable, and that group representation can further democracy. Disease, age, ethnicity, and gender groups like the American Association of Pediatrics (AAP), which campaigns for policies that benefit children’s health, should continue to represent patient interests as well. Within the unified patient lobby, experts on cost and quality, including those who suggest unpopular solutions like certain changes to Medicare, should be heard and, in many cases, heeded. A unified, independent patient lobby could help to restore balance to a policymaking process dominated by other well-funded, well-organized interests.
CONCLUSION
Patients in the United States are a diverse group, with complicated and often contradictory interests. However, they do share some common interests including expectations of confidentiality, freedom to choose their providers, and a hatred of surprise medical billing. Though there are structural obstacles to the development of a unified, independent patient lobby, such a lobby could successfully pressure the appropriate officials or lawmakers to address the issues that affect most patients. Today’s culture values patient input, and with key ACA provisions at risk, patients should begin organizing so they can influence policymaking – potentially with a little help from bureaucrats. To get off the ground, a patient lobbying group analogous to PhRMA, the AHA, or the AMA would have to commit to a big tent philosophy, and it would have to fight hard to maintain its independence. With time, it might become more ambitious and catalyze substantive changes in the arena of patient access and care.
[1] US Congress. Senate. 2001. Bipartisan Patient Protection Act. S1052. 107th Congress. Introduced in Senate June 14, 2001. https://www.congress.gov/107/bills/s1052/BILLS-107s1052es.pdf.
[2] Brubaker, Bill. 2001. “Patients’ Bill’s Foes Back Away From Ad.” Washington Post, April 12, 2001. https://www.washingtonpost.com/archive/business/2001/04/12/patients-bills-foes-back-away-from-ad/53377e06-e173-4bd0-8e5b-797c172c34fc/.
[3] LaPointe, Jacqueline. 2020. “Surprise Billing Action Needed, But Hospitals Urge Congress to Wait.” RevCycleIntelligence, August 6, 2020. https://revcycleintelligence.com/news/surprise-billing-action-needed-but-hospitals-urge-congress-to-wait.
[4] Engel, Jonathan. 2018. Unaffordable. Madison and London: The University of Wisconsin Press.
[5] Kamal, Rabah, Rachel Fehr, Marco Ramirez, and Katherine Horstman. 2018. “How Repeal of the Individual Mandate and Expansion of Loosely Regulated Plans Are Affecting 2019 Premiums.” KFF. October 26, 2018. https://www.kff.org/health-costs/issue-brief/how-repeal-of-the-individual-mandate-and-expansion-of-loosely-regulated-plans-are-affecting-2019-premiums/.
[6] Simmons-Duffin, Selena. 2019. “Trump Is Trying Hard To Thwart Obamacare. How’s That Going?” NPR, October 14, 2019. https://www.npr.org/sections/health-shots/2019/10/14/768731628/trump-is-trying-hard-to-thwart-obamacare-hows-that-going.
[7] McCoy, Matthew S., Michael Carniol, Katherine Chockley, John W. Urwin, Ezekiel J. Emanuel, and Harald Schmidt. 2017. “Conflicts of Interest for Patient-Advocacy Organizations.” New England Journal of Medicine 376 (9): 880–85. https://doi.org/10.1056/NEJMsr1610625.
[8] Hilzenrath, David S. 2016. “In FDA Meetings, ‘Voice’ of the Patient Often Funded by Drug Companies.” Project On Government Oversight (POGO). https://www.pogo.org/investigation/2016/12/in-fda-meetings-voice-of-patient-often-funded-by-drug-companies/.
[9] Vahdat, Shaghayegh, Leila Hamzehgardeshi, Somayeh Hessam, and Zeinab Hamzehgardeshi. 2014. “Patient Involvement in Health Care Decision Making: A Review.” Iranian Red Crescent Medical Journal 16 (1). https://doi.org/10.5812/ircmj.12454.
[10] Redman, Eric. 2000. The Dance of Legislation: An Insider’s Account of the Workings of the United States Senate. 1st edition. Seattle: University of Washington Press.
[11] This is just one possible means by which a unified patient lobby could be formed. Others include slowly, in a grass-roots fashion, by wealthy benefactors or through consolidation of existing disease-specific groups in a more substantive way than has been done to date. I do not claim to know which is most feasible, or if any of them are. But even if they are not, it is important to think about, as future leaders, interested parties, etc. can shape culture and institutions such that they become feasible.
[12] Karas, Laura, Robin Feldman, Ge Bai, So Yeon Kang, and Gerard F Anderson. 2019. “Pharmaceutical Industry Funding to Patient-Advocacy Organizations: A Cross-National Comparison of Disclosure Codes and Regulation” 42 (2): 33.
[13] Morone, James. 1998. The Democratic Wish: Popular Participation and the Limits of American Government. New Haven and London: Yale University Press
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