Patients
A patient is a person receiving services from a healthcare provider or system. It appears with this meaning as early as the fourteenth century, in Chaucer’s Canterbury Tales (OED Online, 2019). A patient may be a resident of a healthcare facility (an inpatient in a hospital) or a resident in the community (an outpatient seen in a clinic).
Although this word is much older than consumer, patient has equally problematic overtones for some because of its other principal meaning: a person who has patience - and thus “carries connotations of passivity and deference to physicians, although that is not inherent in the definition” (Deber et al., 2005).
Because there are problems with patient, the question of just what else to call recipients of healthcare services has been the subject of some research over the years. Deber et al. (2005) surveyed 1,037 patients in four clinics - breast cancer, prostate cancer, fractures, and HIV - and asked these people which term they preferred to describe themselves: customer, survivor, consumer, client, partner, or patient. Respondents were largely negative about most of these terms, with the small exception of the group living with HIV, of which about one third liked the word client. But customer and consumer were strongly disliked by everybody. Dickens and Picchioni (2012) identified 11 published studies in which recipients of mental healthcare were asked their preferences; in eight studies, patient was preferred; in three, client. And in 2019, a large scoping review investigating preferences across healthcare contexts established that people continued to prefer patient consistently in 26 of 33 studies (Costa et al., 2019).
The patient is a potential user of CHI tools as well as a frequent subject of CHI research. Patients living with chronic illness have been of particular interest in the CHI space. However, the patient is only one type of user, because as discussed above, the patient exists in a social network. Patients no less than consumers can benefit from CHI technologies -and the consumer health information they access through these technologies - because they can be empowered to understand their diagnosis and course of treatment, as well as the medical testing they may undergo and resources to support and assist them. This, in turn, should help patients become active partners in managing their care as well as benefit from their partnerships with their healthcare providers (Coulter et al., 1999).
Smith et al.’s scoping review (2020) found that in 271 CHI studies, 109 (52%) involved patient participants. Sometimes, patients and consumers were compared to each other; for example, Koh et al. (2014) studied people who blogged about the experience of stroke, both as survivors and as caregivers. However, 17 other CHI studies illustrate the potential danger of failing to distinguish between consumers and patients. This is the problem for the evidence base in the CHI field. If the health status of the participant is not well understood, conclusions about the effectiveness of the technology will not be well-founded. In 12 of these studies reviewed by Smith et al., the method by which participants were recruited - from the clinic or the general population - was never specified. Some researchers categorized study participants extremely generically as “well, unwell, and disabled” (Lafky & Horan, 2011). Martinez-Perez et al. (2015) studied mobile app users in the cardiology domain. The focus of their research was cardiology apps, but the users who participated in the study were never described nor any diagnoses mentioned, cardiac or not. In another interesting experiment, actors were hired to simulate patients having seizures because the university’s Institutional Review Board would not give permission to use real patients (Spina et al., 2013).
Exemplar Technology: Consumers and Patients
An exemplar technology for both consumer and patient is the patient portal. As noted in Part II, Chapter 7, of this book, patient portal technologies document one person’s encounters with the healthcare system; but because they are repositories of information, they also serve as two-way communication platforms enabling information provision, education, and dialog between a person and their healthcare team. Consumers access portals whether they are living with a diagnosis or not; 29% reported doing so to “monitor” their health when asked by the National Cancer Institute’s HINTS survey in 2017. For example, they can use portals to make appointments for preventive screening (34% in 2017; National Cancer Institute, 2017b). Consumers download their personal health information to their personal computers and devices (25% in 2018; National Cancer Institute, 2018b). Patients can designate other people to have proxy access to their portals - friends, family, children, parents, and caregivers (see below) who are not necessarily patients themselves. While only 4% of consumers have sent their personal health information to family members (National Cancer Institute, 2018a), 50% of consumers had accessed that information through proxy access (National Cancer Institute, 2017a).
