Acknowledging Patient Expertise and the Negotiation of Meanings in the Clinical Encounter

Patient non-adherence is a common and important problem in clinical medicine. Some cases of patient non-adherence are cases in which the patient disagrees with the physician’s recommended treatment based on particular reasons. In this chapter, by drawing upon the science and technology studies literature, specifically the discussion by Collins and Evans and also Wynne of how best to understand scientific controversies, I relate their ideas to the analogous conflict that may occur within a clinical encounter. I draw upon their recognition of the importance of contributory expertise and interactional expertise in providing legitimate knowledge. I also draw upon Wynne’s idea of the ‘negotiation of meanings’ as an important element of the clinical interaction. To resolve potential conflicts between patient and physician before they develop into ‘non-adherence’, I propose the need for a new epistemological framework that recognizes legitimate knowledge offered by the patient as well as the physician. By situating this patient expertise framework within the paradigm of person-centred medicine, and by assuming the goal of medical treatment to be treatment of suffering, patient expertise becomes centralized as a means of determining the nature of patient suffering. Two aspects of the patient’s tacit knowledge - the body aspect and the meaning aspect - both of which are context-dependent and directly accessible only to the patient, are thus recognized as knowledge essential to the success of the interaction. The physician’s role becomes that of both medical expert and possessor of interactional expertise, by which the physician recognizes and includes patient expertise in the treatment decision. Finally, the patient expertise framework must also involve recognizing and incorporating the ‘negotiation of meanings’ into the development of a treatment plan. By acknowledging the importance of patient expertise and the negotiation of meanings, this patient expertise framework should dissolve the problem of patient non-adherence that derives from the patient disagreeing with the therapeutic plan.

A proposed framework for patient engagement throughout the broader research enterprise

Patient engagement in clinical research refers to the involvement of patients beyond the role of research subject. To date, the goals of patient engagement have not been clearly defined for each stage of the research enterprise, which, when viewed broadly, encompasses stages such as setting research priorities, interpreting and incorporating research results in clinical guidance, and translating study results into insurance coverage policies. This article presents a new framework for patient engagement by first describing the goals of patient engagement at each stage of the research enterprise and then establishing how to prioritize the types of patient expertise that are needed to achieve these goals.

The Forms and Uses of Acquired Prostate Cancer Expertise Among Prostate Cancer Survivors

This article examines men’s prostate cancer experiences through the lens of patient expertise. Qualitative interviews were conducted with 29 men treated for prostate cancer, recruited from two prostate cancer support groups (PCSGs) in the South-East of England. Different forms of expertise, as classified by Collins, were found to be possessed by these men. How these different forms of expertise were acquired, used, and shared with others are explored, and a concept of communal licensing is posited to better understand these activities. The acquisition and usage of these different forms of expertise, through the employment of moral discourses that emphasise responsibility for one’s own health, are found to serve to blur the boundaries between lay person and expert.

The Influence of Physician Information on Patients’ Choice of Physician in mHealth Services Using China’s Chunyu Doctor App: Eye-Tracking and Questionnaire Study

Background Mobile health (mHealth) is becoming more popular as a way of sharing medical information. For the patient, it saves time, reduces the need for travel, reduces the cost of searching for information, and brings medical services “to your fingertips.” However, it also brings information overload and makes the patient’s choice of physician more difficult. Objective This study aimed to identify the types of physician information that play a key role in patients’ choice of physician and to explore the mechanism by which this information contributes to this choice. Methods Based on the stimulus-organism-response (SOR) model and online trust theory, we proposed a research model to explain the influence of physician information on patients’ choice of physician. The model was based on cognitive trust and affective trust and considered the moderating role of patient expertise. Study 1 was an eye-tracking experiment (n=42) to identify key factors affecting patients’ choice of physician. Study 2 was a questionnaire study (n=272); Partial Least Squares Structural Equation Modeling was used to validate the research model. Results The results of Study 1 revealed that seven types of physician information played a key role in patients’ choice of physician. The results of Study 2 revealed that (1) physicians’ profile photo information affected patients’ choice of physician by positively influencing affective trust (P<.001); (2) physicians’ nonprofile photo information affected patients’ choice of physician by positively influencing cognitive trust (P<.001); (3) patient-generated information affected patients’ choice of physician by positively affecting cognitive trust (P<.001) and affective trust (P<.001), and patient expertise played a positive moderating role on both (P=.04 and P=.01, respectively); and (4) cognitive trust and affective trust both positively affected patients’ choice of physician, with affective trust playing a more significant role (P<.001 and P<.001, respectively). Conclusions Seven types of physician information were mainly used by patients when choosing physicians offering mHealth services; trust played an important role in this choice. In addition, the level of patient expertise was an important variable in moderating the influence of physician information and patients’ trust. This paper supports the theoretical basis of information selection and processing by patients. These findings can help guide app developers in the construction of medical apps and in the management of physician information in order to facilitate patients’ choice of physician.

The influence of physician information on patient's medical decision-making in mHealth services (Preprint)

BACKGROUND As a new way to share medical information, mHealth is currently booming, which provides a new solution for the improvement of physician-patient relationship. On the one hand, mHealth service breaks the limitation of time and space, reduces the cost of searching for information for patients, and makes medical service “at your fingertips”. However, on the other hand, it makes information overload and brings difficulties to patients' decision-making. OBJECTIVE This study aims to discover the physician information that plays a key role in patient’s decision-making and to explore the mechanism by which this information contributes to patient’s decision-making. Therefore, enriching the theoretical basis of information selection and processing of patients, which play a guiding role in the future APPs construction and information management of mHealth from the perspective of improving patient’s satisfaction. METHODS In the study, eye tracking experiment is designed to discover key factors that influence a patient’s medical decision-making in choosing a physician. Then based on the SOR model and online trust theory, from the perspective of cognitive trust and affective trust, the patient expertise is used as the moderating variable to construct the research model of physician information on patient's medical decision-making. RESULTS The results of the eye tracking experiment reveal that there are 7 aspects of physician information which play a key role in patients' medical decision-making. The results of the research model reveal that (1) physician’s profile photo information affects patient's medical decision-making by positively influencing affective trust (P<.001); (2) physician’s non profile photo information affects patient's medical decision-making by positively influencing cognitive trust (P<.001); (3) patient-generated information affects patient's medical decision-making by positively affecting cognitive trust (P<.001) and affective trust (P<.001), and the patient expertise plays a positive moderating role in both paths (P=.04 and P=.01, respectively); and (4) cognitive trust and affective trust both positively affect patient’s medical decision-making but affective trust plays a more significant role (P<.001 and P<.001, respectively). CONCLUSIONS It is concluded that 7 aspects of physician information are mainly resorted to by patients when they make their medical decision-making, and trust plays an important role in it. In addition, the level of patient expertise is an important variable in moderating physician information and patients’ trust.

What causes fibromyalgia? An online survey of patient perspectives

Fibromyalgia is a severe chronic pain condition that affects every aspect of life. Causes of the condition remain unclear, and quantitative research cannot account for patients’ personal illness narratives and perceptions. This online survey gathered qualitative accounts of the perceived causes of their condition from 596 people with fibromyalgia, which were analyzed thematically. Themes were “Bodily assault, ill-health, and change”; “Emotional trauma and distress”; “Stress and vulnerability”; and “Explaining and authenticating fibromyalgia.” Discussion focuses on the complexity of causation, the importance of understanding and having symptoms validated, and the potential for benefiting from patient expertise in building better practitioner–client relationships.

Patient Involvement in Healthcare-Associated Infection Research: A Lexical Review

OBJECTIVEThis review examines patient involvement in healthcare-associated infection (HAI) research. Healthcare-associated infections represent an intractable issue with considerable implications for patients and staff. Participatory methodologies that involve patients in healthcare research are associated with myriad benefits.DESIGNLexical review.METHODSPubMed was searched to identify all publications on patient involvement in HAI research since 2000; publications were also identified from the cited references. A lexical analysis was conducted of the methods sections of 148 publications.RESULTSThe findings reveal that HAI research that actively involves patients and members of the public is limited.CONCLUSIONSPatient involvement is largely limited to recruitment to HAI studies rather than extended to patient involvement in research design, implementation, analysis, and/or dissemination. As such, there is considerable opportunity to further this important research area via alternative methodologies that award primacy to patient expertise and agency.Infect Control Hosp Epidemiol 2018;39:710–717

‘What should a woman do and imagine to have bulimia?’: Co-constructing patient expertise in psychotherapy with bulimia patients

One of the goals of psychotherapy with bulimia patients is identification of the functions of the eating disorder in their lives. Thus, as in any psychotherapeutic approach, the therapist should facilitate the patient’s disclosure of his or her experience of living with bulimia. Talking about one’s dysphoric experiences and, particularly in the case of bulimia, symptoms and experiences that commonly deprive people with bulimia of dignity, constitutes an emotional challenge for the patient and an equally challenging interactional task for the therapist. Using the example of one therapy session with a female bulimia patient, we examine how the therapist and the patient interactionally engage in co-constructing the patient’s expertise – involving epistemics of experience as well as epistemics of expertise – concerning the illness in the interactional here-and-now. Applying tools and insights from discourse and conversation analysis, we examine the sequences in which the patient shifts the topical focus from a general observation concerning bulimia to her personal experience, to be further pursued interactionally by the therapist. We also discuss how the therapist downgrades her epistemic position and (concurrently) foregrounds and bolsters the patient’s voice as expert to accomplish the session’s therapeutic goals.