Andrea Hartzler

Managing the Personal Side of Health: How Patient Expertise Differs from the Expertise of Clinicians

Background When 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. Objective The 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. Methods Through 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. Results Patient 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). Conclusion Patients 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.

Blowing in the wind: unanchored patient information work during cancer care

Patients do considerable information work. Technologies that help patients manage health information so they can play active roles in their health-care, such as personal health records, provide patients with effective support for focused and sustained personal health tasks. Yet, little attention has been paid to patients needs for information management support while on the go and away from their personal health information collections. Through a qualitative field study, we investigated the information work that breast cancer patients do in such unanchored settings. We report on the types of unanchored information work that patients do over the course of cancer treatment, reasons this work is challenging, and strategies used by patients to overcome those challenges. Our description of unanchored patient information work expands our understanding of patients information practices and points to valuable design directions for supporting critical but unmet needs.

Stakeholder engagement: a key component of integrating genomic information into electronic health records

Integrating genomic information into clinical care and the electronic health record can facilitate personalized medicine through genetically guided clinical decision support. Stakeholder involvement is critical to the success of these implementation efforts. Prior work on implementation of clinical information systems provides broad guidance to inform effective engagement strategies. We add to this evidence-based recommendations that are specific to issues at the intersection of genomics and the electronic health record. We describe stakeholder engagement strategies employed by the Electronic Medical Records and Genomics Network, a national consortium of US research institutions funded by the National Human Genome Research Institute to develop, disseminate, and apply approaches that combine genomic and electronic health record data. Through select examples drawn from sites of the Electronic Medical Records and Genomics Network, we illustrate a continuum of engagement strategies to inform genomic integration into commercial and homegrown electronic health records across a range of health-care settings. We frame engagement as activities to consult, involve, and partner with key stakeholder groups throughout specific phases of health information technology implementation. Our aim is to provide insights into engagement strategies to guide genomic integration based on our unique network experiences and lessons learned within the broader context of implementation research in biomedical informatics. On the basis of our collective experience, we describe key stakeholder practices, challenges, and considerations for successful genomic integration to support personalized medicine.Genet Med 15 10, 792–801.Genetics in Medicine (2013); 15 10, 792–801. doi:10.1038/gim.2013.127

Descriptive analysis of physical activity conversations on Twitter

This paper explores how people are using Twitter.com to manage and share information about health-promoting physical activity. We analyzed archived posts, called tweets, from Twitter.com to learn about the range, patterns, and captured metadata associated with muscle-strengthening, aerobic, and flexibility-enhancing physical activities. The content analysis describes how people are using Twitter to post about their health-related fitness activities. These findings can support the design of supportive tools and applications connected with the social media platform.

Participant-Centric Initiatives: Tools to Facilitate Engagement In Research.

Clinical genomic research faces increasing challenges in establishing participant privacy and consent processes that facilitate meaningful choice and communication capacity for longitudinal and secondary research uses. There are an evolving range of participant-centric initiatives that combine web-based informatics tools with new models of engagement and research collaboration. These emerging initiatives may become valuable approaches to support large-scale and longitudinal research studies. We highlight and discuss four types of emerging initiatives for engaging and sustaining participation in research.

User-centered design of quality of life reports for clinical care of patients with prostate cancer.

BACKGROUNDnPrimary treatment of localized prostate cancer can result in bothersome urinary, sexual, and bowel symptoms. Yet clinical application of health-related quality-of-life (HRQOL) questionnaires is rare. We employed user-centered design to develop graphic dashboards of questionnaire responses from patients with prostate cancer to facilitate clinical integration of HRQOL measurement.nnnMETHODSnWe interviewed 50 prostate cancer patients and 50 providers, assessed literacy with validated instruments (Rapid Estimate of Adult Literacy in Medicine short form, Subjective Numeracy Scale, Graphical Literacy Scale), and presented participants with prototype dashboards that display prostate cancer-specific HRQOL with graphic elements derived from patient focus groups. We assessed dashboard comprehension and preferences in table, bar, line, and pictograph formats with patient scores contextualized with HRQOL scores of similar patients serving as a comparison group.nnnRESULTSnHealth literacy (mean score, 6.8/7) and numeracy (mean score, 4.5/6) of patient participants was high. Patients favored the bar chart (mean rank, 1.8 [P = .12] vs line graph [P < .01] vs table and pictograph); providers demonstrated similar preference for table, bar, and line formats (ranked first by 30%, 34%, and 34% of providers, respectively). Providers expressed unsolicited concerns over presentation of comparison group scores (n = 19; 38%) and impact on clinic efficiency (n = 16; 32%).nnnCONCLUSIONnBased on preferences of prostate cancer patients and providers, we developed the design concept of a dynamic HRQOL dashboard that permits a base patient-centered report in bar chart format that can be toggled to other formats and include error bars that frame comparison group scores. Inclusion of lower literacy patients may yield different preferences.

Leveraging visual feedback from social signal processing to enhance clinicians' nonverbal skills

Nonverbal communication between patients and clinicians affects the delivery of empathic patient-centered care and patient outcomes. To be effective communicators, clinicians must appropriately encode, decode, and regulate nonverbal cues, such as speech rate, pitch, facial expression, and body language. Yet, few efforts to develop tools for enhancing clinician communication have focused on nonverbal aspects of the clinical encounter. To address this gap, we describe a novel solution that both uses social signal processing technology (SSP) to capture nonverbal cues in real time and displays instant visual feedback. In this paper, we examine the theoretical underpinnings of nonverbal cues and their critical role in clinical encounters. We then describe opportunities for capturing nonverbal cues with SSP and explore visual designs for feeding back those social signals to enhance clinicians nonverbal communication.

Prospective participant selection and ranking to maximize actionable pharmacogenetic variants and discovery in the eMERGE Network

BackgroundIn an effort to return actionable results from variant data to electronic health records (EHRs), participants in the Electronic Medical Records and Genomics (eMERGE) Network are being sequenced with the targeted Pharmacogenomics Research Network sequence platform (PGRNseq). This cost-effective, highly-scalable, and highly-accurate platform was created to explore rare variation in 84 key pharmacogenetic genes with strong drug phenotype associations.MethodsTo return Clinical Laboratory Improvement Amendments (CLIA) results to our participants at the Group Health Cooperative, we sequenced the DNA of 900 participants (61 % female) with non-CLIA biobanked samples. We then selected 450 of those to be re-consented, to redraw blood, and ultimately to validate CLIA variants in anticipation of returning the results to the participant and EHR. These 450 were selected using an algorithm we designed to harness data from self-reported race, diagnosis and procedure codes, medical notes, laboratory results, and variant-level bioinformatics to ensure selection of an informative sample. We annotated the multi-sample variant call format by a combination of SeattleSeq and SnpEff tools, with additional custom variables including evidence from ClinVar, OMIM, HGMD, and prior clinical associations.ResultsWe focused our analyses on 27 actionable genes, largely driven by the Clinical Pharmacogenetics Implementation Consortium. We derived a ranking system based on the total number of coding variants per participant (75.2±14.7), and the number of coding variants with high or moderate impact (11.5±3.9). Notably, we identified 11 stop-gained (1 %) and 519 missense (20 %) variants out of a total of 1785 in these 27 genes. Finally, we prioritized variants to be returned to the EHR with prior clinical evidence of pathogenicity or annotated as stop-gain for the following genes: CACNA1S and RYR1 (malignant hyperthermia); SCN5A, KCNH2, and RYR2 (arrhythmia); and LDLR (high cholesterol).ConclusionsThe incorporation of genetics into the EHR for clinical decision support is a complex undertaking for many reasons including lack of prior consent for return of results, lack of biospecimens collected in a CLIA environment, and EHR integration. Our study design accounts for these hurdles and is an example of a pilot system that can be utilized before expanding to an entire health system.

Brainstorming design for health: helping patients utilize patient-generated information on the web

Researchers and practitioners show increasing interest in utilizing patient-generated information on the Web. Although the HCI and CSCW communities have provided many exciting opportunities for exploring new ideas and building broad agenda in health, few venues offer a platform for interdisciplinary and collaborative brainstorming about design challenges and opportunities in this space. The goal of this workshop is to provide participants with opportunities to interact with stakeholders from diverse backgrounds and practices - researchers, practitioners, designers, programmers, and ethnographers - and together generate tangible design outcomes that utilize patient-generated information on the Web. Through small multidisciplinary group work, we will provide participants with new collaboration opportunities, understanding of the state of the art, inspiration for future work, and ideally avenues for continuing to develop research and design ideas generated at the workshop.

Comprehension and preferences for graphical representations of quality of life after prostate cancer treatment.

76 Background: Integration of quality of life (QoL) measurement into clinical prostate cancer (PCa) practice may enhance patients communication with clinicians, improve satisfaction with care, and affect the delivery of secondary therapies. A necessary step to achieve these benefits is illustrating QoL in ways patients can understand and use. Through a patient-partnered project, we developed graphical representations of prostate cancer QoL (dashboards) and compared patients comprehension and preferences among four alternative formats: table, bar chart, line graph, and pictograph.nnnMETHODSnWe conducted interviews with PCa patients and assessed health literacy, subjective numeracy, and graphic literacy with validated instruments (REALM, Subjective Numeracy Scale, Graphic Literacy Scale). We then presented patients the 4 candidate dashboards counterbalanced for format order, and assessed participants comprehension, helpfulness rating, and rank order preferences.nnnRESULTSnOur study included 29 PCa patients, with mean age 71 years (range 53-90). Patients were mostly white (86%) and had at least a college degree (76%). Most had localized PCa (90%) and 55% were treated within the last 5 years; 9 patients had undergone more than one type of treatment. Patients health literacy (mean score 6.9±0.26 out of 7), numeracy (mean score 4.3±0.94 out of 6), and graphic literacy (mean score 11.4±1.4 out of 13) was high. Comprehension did not vary by dashboard format (p=0.39), ranging from 84% correct for line graph to 91% correct for bar chart. The pictograph exhibited lower helpfulness ratings (p=0.001). Preference elicitation strongly favored the bar chart (p=0.004), ranked 1st by 52% of patients, and disfavored pictograph, ranked 4th by 69% of patients.nnnCONCLUSIONSnAmong a high literacy and numeracy sample of PCa patients, comprehension and preference ranking strongly favored bar charts for QoL dashboards. Pictographs, known to benefit low literacy patients, were not preferred despite good comprehension. Inclusion of lower literacy patients may yield different results. Future work will determine if clinical integration of QoL dashboards is associated with improved health outcomes.