An Analysis of Contextual Information Relevant to Medical Care Unexpectedly Volunteered to Researchers by Asthma Patients

Abstract

Objective. To describe and categorize contextual information relevant to patients’ medical care unexpectedly volunteered to research personnel as part of a patient advocate (PA) intervention to facilitate access health care, communication with medical personnel, and self-management of a chronic disease such as asthma. Methods. We adapted a patient navigator intervention, to overcome barriers to access and communication for adults with moderate or severe asthma. Informed by focus groups of patients and providers, our PAs facilitated preparation for a visit with an asthma provider, attended the visit, confirmed understanding, and assisted with post-visit activities. During meetings with researchers, either for PA activities or for data collection, participants frequently volunteered personal and medical information relevant for achieving successful self-management that was not routinely shared with medical personnel. For this project, researchers journaled information not captured by the structured questionnaires and protocol. Using a qualitative analysis, we describe (1) researchers’ journals of these unique communications; (2) their relevance for accomplishing self-management; (3) PAs’ formal activities including teach-back, advocacy, and facilitating appointment making; and (4) observations of patients’ interactions with the clinical practices. Results: In 83 journals, patients’ social support (83%), health (68%), and deportment (69%) were described. PA assistance with navigating the medical system (59%), teach-back (46%), and observed interactions with patient and medical staff (76%) were also journaled. Implicit were ways patients and practices could overcome barriers to access and communication. Conclusions: These journals describe the importance of seeking contextual and medically relevant information from all patients and, especially, those with significant morbidities, prompting patients for barriers to access to health care, and confirming understanding of medical information.

• asthma
• health access
• health communication
• health literacy
• patient advocate
• patient navigator

Acknowledgment

Dr. Apter receives support from the National Institutes of Health (NIH)/National Heart, Lung, and Blood Institute (NHLBI; HL070392, HL088469, and HL099612) and from AstraZeneca/Bristol-Myers Squibb for an unrelated project. Heather L. Black, PhD; Chantel Priolo, BA; Rodalyn Gonzalez, BA; Bariituu Adam, BA, Sabrina Geer, BA receive support from NIH/NHLBI (HL070392 and HL099612). Dr. Black is employed by Spring International.

Declaration of Interest

The authors report no conflict of interest. The authors alone are responsible for the content and writing of this article.