As we’ve engaged in research partnerships over the past few years, our team has learned many lessons along the way. We’ve launched this new blog series, Notes from the PCOR Field, that focuses on how partnerships with patients, caregivers, family members, and other stakeholders have changed the way we think about and conduct research. Our second post is from Patient Advisory Network Director Danielle Lavallee on the use of the term “human subjects” to describe people who participate in research studies.
Words matter. This is one of many lessons I have learned through patient-centered outcomes research. The common challenge faced is the jargon used in research. The terms used by researchers are often technical and not self-descriptive. Acronyms, ever abundant, are even worse. On occasion, however, a term or phrase comes up that, in the spirit of patient-centricity, borders on offensive. For me, that term is human subject.
In research, a human subject is defined as “a living individual about whom an investigator conducting research obtains (1) data through intervention or interaction with the individual, or (2) identifiable private information about whom includes a subject’s opinion on a given topic.” (source: US Department of Health and Human Services) Interestingly, it is most often referenced in the context of informed consent for research participation.
I find the term subject falls short as we push towards patient-centered research. As defined, the term “subject” indicates “a person or thing that is being discussed or described; a person or thing that is being dealt with in a particular way.” Placing person and thing in the same context, in my opinion, dehumanizes the person participating in the research process. It is a stark contrast to the true partnership that we strive for in patient-centered research.
The premise of patient-centered outcomes research (PCOR) is to “help people and their care partners communicate and make informed health care decisions, allowing their voices to be heard and valued in assessing the relevant health care options. PCOR promotes partnership with patients and caregivers throughout the research process to ensure that what researchers seek to study is important and informative to people grappling with often difficult and complex decisions about health.” (source: Patient-Centered Outcomes Research Institute)
It is contrary to the mission of PCOR then to view the focus of our research as merely a subject or thing rather than as a person with interests, preferences, and needs in healthcare. Humanizing our definition of who participates in research is critical. In doing so, we shift focus from what we think is interesting to research to what is important to improve patient care; we think not only about what we can measure, but what is meaningful to measure; we strive for transparency in our work; and we seek effective mechanisms to disseminate our findings to transform patient care.
But most importantly, we recognize that research is only possible with the participation of each individual who contributes time, data, experience, tissue, blood, etc., to help us all learn and advance healthcare.
At CERTAIN, we’re working to change our terminology. The term we use for people who agree to participate in our research studies is study participant – a simple but important change. Although perhaps not a perfect term, we vastly prefer it to research or study subject, as the term study participant acknowledges the willingness to contribute and gives people more agency than referring to them merely as subjects.
What do you think about the term human subjects? What other research terms do you feel need updating? We would love to hear from you in the comments below!
Do you have a lesson you’ve learned, a challenge you’ve overcome, or simply thoughts on PCOR partnerships you would like to share for a future Notes from the PCOR Field post? We would love to feature you! Contact Sarah Lawrence to discuss further.