Research is critical for improving health, and people often assume this means clinical or pharmaceutical work. But the systems, policies and norms in healthcare also change people’s lives fundamentally and need to be studied.
UBC graduate students are advancing research on health ethics, policy and practices. With focuses on decision-making, advocacy and common perspectives, students are uncovering societal and systemic factors while working toward a healthier world.
- Alyssa Izatt studies the right to make regretful decisions and how risk of regret is used to deny women certain treatments. She challenges hidden ethical assumptions in health policies and practices.
- Leah Shipton researches decision-making power in partnerships between public and private health organizations. Her work uncovers how funding and power influence decolonization and resource distribution in global health.
- Natasha Marriette investigates health care professionals’ perspectives on decision-making when they assess adult abuse and neglect. Her research reveals the urgent need for more training and legal backing to allow professionals to respond adequately.
- Rose Xueqing Zhang examines how white-collar workers in China experience overwork. Her research uncovers how symptoms are left untreated and the social factors that harm these workers’ health.
- Kate Wahl analyzes how health scholars can best communicate their research by speaking to policymakers’ values and beliefs. She uses her background in reproductive health to look at the power of using patient stories in advocacy.
Each student is working to improve health through their research — learn more about their work and impact below.
Alyssa Izatt, PhD Candidate in Philosophy
Regret is used in medical contexts as a reason to deny certain treatments, because physicians often assume that regret is a harm that must be prevented. Alyssa Izatt, a PhD candidate in Philosophy, is challenging this assumption and supporting patient rights to autonomy.
Humans have the right to make decisions about their own bodies, and part of that right is making decisions with a risk of regret, says Izatt. In medical contexts, this right is especially relevant for women’s reproductive health.
“Even if a woman has an option closed off, maybe even if she does come to regret having a procedure, it doesn't negate a right to make that decision,” she said.
Providers often deny women tubal ligations, which are permanent sterilization procedures, because the women might regret them in the future. Izatt claims this goes against women’s rights to bodily autonomy. Though she agrees that informed consent is important, she worries that regret can be used to support paternalistic interventions in treatment and policy.
Izatt values collaborating with researchers in fields like medicine and law to examine these issues from multiple angles. She has done collaborative research on ethical considerations for denying women sterilization procedures, and she hopes to have a greater impact through interdisciplinary work.
As a philosopher, Izatt sees her role in interdisciplinary collaboration as finding and challenging theoretical assumptions used in practice. She also questions the commonly assumed relationship where pregnant women are mere containers for their babies as opposed to babies being part of pregnant women, a view she considers dehumanizing.
Failing to recognize common assumptions can have a major impact on policy and legislation, says Izatt. Worries about patient regret and other less obvious assumptions heavily influence rules and legislation.
“I’m interested as well in these policy questions, like how are we treating this? What sort of norms are we implicitly sneaking into certain policy decisions?” said Izatt.
Izatt hopes that by making the theory in these practices accessible, her research will positively impact both access and policy.
Leah Shipton, PhD Candidate in Political Science
Many global health policy decisions are made through public-private partnerships, groups with at least one public and one private partner working toward a health-promoting goal. The scope and power of these partnerships are growing.
Leah Shipton, a PhD candidate in political science, is studying the distribution of power within these partnerships and its outcomes. Her new dataset shows that 68 per cent of the seats on partnerships’ boards are held by actors from high-income countries, though these partnerships tend to target issues in low or middle-income countries.
These often well-funded partnerships have a limited number of decision-makers compared to organizations like the more democratic but underfunded World Health Organization.
In her research, Shipton is building a dataset of public-private partnerships in global health and using one such partnership, the Access to Covid-19 Tools (ACT) Accelerator, as a case study. The ACT-Accelerator governed global covid response, and Shipton is uncovering how relationships and levels of influence impacted the partnership.
The vaccine arm of the partnership COVAX, for example, had to prioritize high-income donor countries’ interests. The situation created logistical and equity issues for the low and middle-income countries who relied on COVAX but did not have access to vaccines.
Cases like the ACT-Accelerator reflect how partnerships are growing in size without distributing resources and governance back to countries, particularly countries in the global South.
“I don’t think Canada would allow an external partnership to make decisions on its behalf about how many vaccines its population can access,” said Shipton. “But this is often the position global South countries are put in.”
By adding to the limited empirical research on the ACT-Accelerator, Shipton hopes to take an early step in transparency and historical record-keeping. She also plans to share her research in a public-facing format.
Shipton’s research will also contribute to current debates on whether the ACT-Accelerator should be a model for responding to pandemics and how it demonstrates a need to decolonize global health.
“It’s a field that likes to be quite technical and apolitical,” she said. “But I think in practice, a lot of power dynamics are going on that completely contradict those claims of health being apolitical.”
Natasha Marriette, Phd Student in Social Work
British Columbia’s Adult Guardianship Act requires certain agencies to investigate and respond to adult abuse and neglect, particularly where the adult is disabled or ill. Professionals do not receive enough training on meeting the Act’s obligations.
Because professionals’ perspectives and lack of specific training shape these assessments, social work PhD student Natasha Marriette studies how health professionals understand decision-making and risk in relation to the Act.
According to Marriette, professionals assess cases rather differently from one discipline to another. As a Registered Social Worker, her education prioritized looking at a client’s whole situation, considering factors like culture, language, environment and income. Other professions only look at the individual level, excluding factors such as hierarchies in families or adults guiding their actions by what’s best for their community.
One common problem in assessments is black-and-white thinking. Assessors often want to say a person simply can or cannot make decisions for themselves, but reality is more complex. Individual standards of living vary, and professionals should consider specific adjustments that preserve a person’s ability to decide what’s important in their life.
If these assessments are done poorly, the consequences can be dire.
“From a human rights perspective, we can very much negatively affect someone’s life,” said Marriette. “They can be put into long-term care against their will. They can have their financial management given to someone else.”
Even when programs and professionals understand their obligations, the Act does not provide the necessary resources to properly carry out assessments and provide support. For example, a designated responder may need to move someone away from imminent danger to a safe place, but emergency services have no authority under the Act.
“We have a piece of legislation, but we feel like we aren't given the support to actually carry out the job that we're expected to do,” said Marriette. “We lack training, we lack education and we lack the actual legal backing to do the work.”
Marriette plans to build a training program and specialization for professionals on working under the Act, especially on how to assess risk and decision-making. She also hopes to bring more attention to the issue and social work’s ongoing contributions.
“I really see my research as sort of ongoing advocacy,” said Marriette, “in my role as a social worker and the work that I do under the Adult Guardianship Act.”
Rose Xueqing Zhang, PhD Candidate in Sociology
Many highly paid, white-collar workers in China are struggling with overwork, but current research and medical systems are not addressing the problem. Rose Xueqing Zhang, a PhD candidate in Sociology, is documenting the problem and dispelling myths about these white-collar jobs through her research.
According to Zhang, overworked employees in white-collar roles are often working at least 12 hours a day, well within overwork’s definition of more than 40 hours per week.
Some overworked employees even end up in the hospital, with symptoms like a rapid heart rate and a feeling of impending death, but doctors will dismiss them because they have no diagnosable disease. Zhang said one previously healthy young woman was sent to the hospital in an ambulance twice during a single year of overworking, and doctors could not help her because their tests did not identify any issues.
Zhang believes sociology can capture people’s experiences and the social factors impacting health, like workplace issues and stress, in ways that medical systems cannot examine or solve.
A sociological perspective also reveals how particular groups of white-collar workers are impacted. Many overworked, white-collar women are embracing childlessness because they want to avoid workplace penalties for becoming mothers. This phenomenon is particularly relevant given China’s low birth rate.
“The pervasive overwork regime has contributed to that, because people don’t have time to date,” said Zhang. “They don’t have the energy to develop a relationship or even have a child.”
Some women also choose to remain childless so that future children would not have to share their experience, especially when economic factors make it difficult for people to quit the jobs harming their health. But according to Zhang, most people who do quit these jobs recover soon after, leading her to think overwork is the cause of their symptoms.
“People used to frame overwork like chasing dreams, realizing their value and moving up the social ladder, but it’s actually not the case,” said Zhang.
Zhang hopes that her research brings awareness to the underexamined consequences of overwork, particularly for women. She also aims to publish a book dispelling myths about white-collar jobs and overwork.
Kate Wahl, Phd Candidate in Women+ and Children's Health Sciences
Policymakers need research evidence to make informed decisions. PhD Candidate Kate Wahl is investigating how scholars can best communicate their research to decision-makers.
According to Wahl, researchers are more comfortable sharing their evidence than engaging with policymakers’ values and beliefs. However, stories from a real client or an example based on multiple experiences can explain the impact of research while speaking to policymakers’ values.
“Storytelling is a strategy for linking the evidence you're bringing forward as a researcher to that broader context,” said Wahl. "That might be helpful to a policymaker who’s trying to develop a policy or make a decision.”
Wahl finds it critical to examine how decisions are made, particularly on polarizing topics where there are greater risks to uninformed policies where policymakers may prioritize re-election over research evidence.
“It's become even more timely as we've seen some of the political changes that have been going on and have social media effects on knowledge consumption,” said Wahl. “I think it's a really critical time for scientists and researchers to reflect on the work that they do, what they're trying to achieve and how they can achieve that in the best way, and what the consequences might be for sticking with the approaches that we conventionally take.”
In her research, Wahl focuses on what makes knowledge translation for abortion care and family planning effective. Stories are a key factor in this work.
She has also communicated stories directly to policymakers through EndoAct, an advocacy organization that came from her master’s research on endometriosis. Wahl has found storytelling and bringing a patient rather effective in this work.
“We've heard from policymakers that seeing the stories and sometimes having people with lived experience in those meetings is extremely helpful, because they're getting the evidence but it's also tying into their broader responsibility for public service,” said Wahl.
Wahl hopes her research will help scientists make compelling cases for their work.
“We are in an era increasingly where researchers really have to communicate effectively on behalf of their evidence,” said Wahl. “I would like for my research to prompt a discussion about the tools that we as scientists use to communicate.”
Recommended resources for further reading:
- Barbee, Harry, Bashar Hassan, and Fan Liang. “Transgender regret? Research challenges narratives about gender-affirming surgeries.” The Conversation, January 22, 2024.
- Ehrlich, J. Shoshanna, and Alesha E. Doan. Abortion Regret: The New Attack on Reproductive Freedom. Praeger, 2019.
- Izatt, Alyssa, Rebecca A. Greenberg, Julie Thorne, Joanna Erdman, and Nipa Chauhan. “Ethical and Legal Considerations for Sterilization Refusal in Nulliparous Women.” Obstetrics & Gynecology 142, no. 6 (2023): 1316–21.
- Kingma, Elselijn. “Were You a Part of Your Mother?” Mind 128, no. 511 (2019): 609–46.
- Moon, Suerie, Jana Armstrong, Brian Hutler et al. “Governing the Access to COVID-19 Tools Accelerator: towards greater participation, transparency, and accountability.” The Lancet 399, no. 10323 (2022): 487–94.
- Storeng, Tagmatarchi Katerini, Antoine de Bengy Puyvallée, and Felix Stein. "COVAX and the rise of the ‘super public private partnership’ for global health." Global Public Health 18, no. 1 (2021).
Guest post by Marie Erikson, fourth-year Bachelor of Arts, Philosophy Honours student.