BackgroundWhen patients need health information to manage their personal health, they turn to both health professionals and other patients. Yet, we know little about how the information exchanged among patients (ie, patient expertise) contrasts with the information offered by health professionals (ie, clinician expertise). Understanding how patients’ experiential expertise contrasts with the medical expertise of health professionals is necessary to inform the design of peer-support tools that meet patients’ needs, particularly with the growing prevalence of largely unguided advice sharing through Internet-based social software.ObjectiveThe objective of our study was to enhance our understanding of patient expertise and to inform the design of peer-support tools. We compared the characteristics of patient expertise with that of clinician expertise for breast cancer.MethodsThrough a comparative content analysis of topics discussed and recommendations offered in Internet message boards and books, we contrasted the topic, form, and style of expertise shared in sources of patient expertise with sources of clinician expertise.ResultsPatient expertise focused on strategies for coping with day-to-day personal health issues gained through trial and error of the lived experience; thus, it was predominately personal in topic. It offered a wealth of actionable advice that was frequently expressed through the narrative style of personal stories about managing responsibilities and activities associated with family, friends, work, and the home during illness. In contrast, clinician expertise was carried through a prescriptive style and focused on explicit facts and opinions that tied closely to the health care delivery system, biomedical research, and health professionals’ work. These differences were significant between sources of patient expertise and sources of clinician expertise in topic (P < .001), form (P < .001), and style (P < .001).ConclusionPatients offer other patients substantial expertise that differs significantly from the expertise offered by health professionals. Our findings suggest that experienced patients do not necessarily serve as “amateur doctors” who offer more accessible but less comprehensive or detailed medical information. Rather, they offer valuable personal information that clinicians cannot necessarily provide. The characteristics of patient expertise and the resulting design implications that we identified will help informaticians enhance the design of peer-support tools that will help meet patients’ diverse information needs.
Community health workers have potential to enhance primary care access and quality, but remain underutilized. To provide guidance on their integration, we characterized roles and functions of community health workers in primary care through a literature review and synthesis. Analysis of 30 studies identified 12 functions (ie, care coordination, health coaching, social support, health assessment, resource linking, case management, medication management, remote care, follow-up, administration, health education, and literacy support) and 3 prominent roles representing clusters of functions: clinical services, community resource connections, and health education and coaching. We discuss implications for community health worker training and clinical support in primary care.
BackgroundPost-discharge surgical site infections (SSI) are a major source of morbidity, expense and anxiety for patients. However, patient perceptions about barriers experienced while seeking care for post-discharge SSI have not been assessed in depth. We explored patient experience of SSI and openness to a mobile health (mHealth) wound monitoring “app” as a novel solution to address this problem.MethodsMixed method design with semi-structured interviews and surveys. Participants were patients who had post-discharge surgical wound complications after undergoing operations with high risk of SSI, including open colorectal or ventral hernia repair surgery. The study was conducted at two affiliated teaching hospitals, including an academic medical center and a level 1 trauma center.ResultsFrom interviews with 13 patients, we identified 3 major challenges that impact patients' ability to manage post-discharge surgical wound complications, including required knowledge for wound monitoring from discharge teaching, self-efficacy for wound monitoring at home, and accessible communication with their providers about wound concerns. Patients found an mHealth wound monitoring application highly acceptable and articulated its potential to provide more frequent, thorough, and convenient follow-up that could reduce post-discharge anxiety compared to the current practice. Major concerns with mHealth wound monitoring were lack of timely response from providers and inaccessibility due to either lack of an appropriate device or usability challenges.ConclusionsOur findings reveal gaps and frustrations with post-discharge care after surgery which could negatively impact clinical outcomes and quality of life. To address these issues, we are developing mPOWEr, a patient-centered mHealth wound monitoring application for patients and providers to collaboratively bridge the care transition between hospital and home.
We have identified critical barriers to integrating PGHD into clinical care and describe design implications to help address these barriers. Our work informs future efforts to ensure the smooth integration of essential PGHD into clinical practice.
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