Baria Hafeez

“You Get Reminded You’re a Sick Person”: Personal Data Tracking and Patients With Multiple Chronic Conditions

Background Consumer health information technologies (HIT) that encourage self-tracking, such as diet and fitness tracking apps and disease journals, are attracting widespread interest among technology-oriented consumers (such as “quantified self” advocates), entrepreneurs, and the health care industry. Such electronic technologies could potentially benefit the growing population of patients with multiple chronic conditions (MCC). However, MCC is predominantly a condition of the elderly and disproportionately affects the less affluent, so it also seems possible that the barriers to use of consumer HIT would be particularly severe for this patient population. Objective Our aim was to explore the perspectives of individuals with MCC using a semistructured interview study. Our research questions were (1) How do individuals with MCC track their own health and medical data? and (2) How do patients and providers perceive and use patient-tracked data? Methods We used semistructured interviews with patients with multiple chronic diseases and providers with experience caring for such patients, as well as participation in a diabetes education group to triangulate emerging themes. Data were analyzed using grounded theory and thematic analysis. Recruitment and analysis took place iteratively until thematic saturation was reached. Results Interviews were conducted with 22 patients and 7 health care providers. The patients had an average of 3.5 chronic conditions, including type 2 diabetes, heart disease, chronic pain, and depression, and had regular relationships with an average of 5 providers. Four major themes arose from the interviews: (1) tracking this data feels like work for many patients, (2) personal medical data for individuals with chronic conditions are not simply objective facts, but instead provoke strong positive and negative emotions, value judgments, and diverse interpretations, (3) patients track for different purposes, ranging from sense-making to self-management to reporting to the doctor, and (4) patients often notice that physicians trust technologically measured data such as lab reports over patients’ self-tracked data. Conclusions Developers of consumer health information technologies for data tracking (such as diet and exercise apps or blood glucose logs) often assume patients have unlimited enthusiasm for tracking their own health data via technology. However, our findings potentially explain relatively low adoption of consumer HIT, as they suggest that patients with multiple chronic illnesses consider it work to track their own data, that the data can be emotionally charged, and that they may perceive that providers do not welcome it. Similar themes have been found in some individual chronic diseases but appeared more complex because patients often encountered “illness work” connected to multiple diseases simultaneously and frequently faced additional challenges from aging or difficult comorbidities such as chronic pain, depression, and anxiety. We suggest that to make a public health impact, consumer HIT developers should engage creatively with these pragmatic and emotional issues to reach an audience that is broader than technologically sophisticated early adopters. Novel technologies are likely to be successful only if they clearly reduce patient inconvenience and burden, helping them to accomplish their “illness work” more efficiently and effectively.

The Invisible Work of Personal Health Information Management Among People With Multiple Chronic Conditions: Qualitative Interview Study Among Patients and Providers

Background A critical problem for patients with chronic conditions who see multiple health care providers is incomplete or inaccurate information, which can contribute to lack of care coordination, low quality of care, and medical errors. Objective As part of a larger project on applications of consumer health information technology (HIT) and barriers to its use, we conducted a semistructured interview study with patients with multiple chronic conditions (MCC) with the objective of exploring their role in managing their personal health information. Methods Semistructured interviews were conducted with patients and providers. Patients were eligible if they had multiple chronic conditions and were in regular care with one of two medical organizations in New York City; health care providers were eligible if they had experience caring for patients with multiple chronic conditions. Analysis was conducted from a grounded theory perspective, and recruitment was concluded when saturation was achieved. Results A total of 22 patients and 7 providers were interviewed; patients had an average of 3.5 (SD 1.5) chronic conditions and reported having regular relationships with an average of 5 providers. Four major themes arose: (1) Responsibility for managing medical information: some patients perceived information management and sharing as the responsibility of health care providers; others—particularly those who had had bad experiences in the past—took primary responsibility for information sharing; (2) What information should be shared: although privacy concerns did influence some patients’ perceptions of sharing of medical data, decisions about what to share were also heavily influenced by their understanding of health and disease and by the degree to which they understood the health care system; (3) Methods and tools varied: those patients who did take an active role in managing their records used a variety of electronic tools, paper tools, and memory; and (4) Information management as invisible work: managing transfers of medical information to solve problems was a tremendous amount of work that was largely unrecognized by the medical establishment. Conclusions We conclude that personal health information management should be recognized as an additional burden that MCC places upon patients. Effective structural solutions for information sharing, whether institutional ones such as care management or technological ones such as electronic health information exchange, are likely not only to improve the quality of information shared but reduce the burden on patients already weighed down by MCC.

Increasing Ketamine Use for Refractory Status Epilepticus in US Pediatric Hospitals

Ketamine is an emerging therapy for pediatric refractory status epilepticus. The circumstances of its use, however, are understudied. The authors described pediatric refractory status epilepticus treated with ketamine from 2010 to 2014 at 45 centers using the Pediatric Hospital Inpatient System database. For comparison, they described children treated with pentobarbital. The authors estimated that 48 children received ketamine and pentobarbital for refractory status epilepticus, and 630 pentobarbital without ketamine. Those receiving only pentobarbital were median age 3 [interquartile range 0-10], and spent 30 [18-52] days in-hospital, including 17 [9-28] intensive care unit (ICU) days; 17% died. Median cost was

Predicting frequent emergency department use among children with epilepsy: A retrospective cohort study using electronic health data from 2 centers

148 000 [81 000-241 000]. The pentobarbital-ketamine group was older (7 [2-11]) with longer hospital stays (51 [30-93]) and more ICU days (29 [20-56]); 29% died. Median cost was

Care coordination at a pediatric accountable care organization (ACO): A qualitative analysis☆

298 000 [176 000-607 000]. For 71%, ketamine was given ≥1 day after pentobarbital. Ketamine cases per half-year increased from 2 to 9 (P < .05). Ketamine is increasingly used for severe pediatric refractory status epilepticus, typically after pentobarbital. Research on its effectiveness is indicated.

Feasibility of Automatic Extraction of Electronic Health Data to Evaluate a Status Epilepticus Clinical Protocol

Among children with epilepsy, to develop and evaluate a model to predict emergency department (ED) use, an indicator of poor disease control and/or poor access to care.

A Novel Emergency Department-Based Telemedicine Program: How Do Older Patients Fare?

OBJECTIVE Care coordinators may help manage care for children with chronic illness. Their role in pediatric epilepsy care is understudied. We aimed to qualitatively describe the content of a care coordination intervention for children with epilepsy. METHODS We conducted nine semi-structured interviews and one focus group with care coordinators at a pediatric accountable care organization (ACO) in Ohio. The care coordinators used a modified version of a published care coordination checklist for children with epilepsy (Patel AD, 2014). We analyzed transcripts using thematic analysis. We focused on (1) the content of the intervention; and (2) perceptions of facilitators and barriers to improve outcomes, with an emphasis on epilepsy specific facilitators and barriers. RESULTS Care coordinators interacted with children and families in multiple contexts (phone calls, physician visits, home visits), and included relationship building (developing rapport and trust between families and the health system), communication (transmission of information between the child, family, physician, and other care providers), and service (help with housing, transportation, scheduling, liaison with community resources, etc.). Facilitators and barriers of care coordination included factors related to parents, physicians, health system, payers, and community. Epilepsy-specific barriers included stigma (felt & enacted) and the anxiety associated with clinical uncertainty. Epilepsy related facilitators included a seizure action plan, written educational materials, and an epilepsy specific care coordination checklist. CONCLUSION In addition to facilitators and barriers common to many care coordination programs, pediatric epilepsy care coordinators should be particularly aware of epilepsy stigma and clinical uncertainty. A care coordination checklist and epilepsy focused educational materials written to accommodate people with low health literacy may provide additional benefit. Further research is required to understand the effect of care coordination on costs, use of health services, seizure control, and quality of life for children with epilepsy.

Focus Section Health IT Usability: Applying a Task-Technology Fit Model to Adapt an Electronic Patient Portal for Patient Work

Status epilepticus is a common neurologic emergency in children. Pediatric medical centers often develop protocols to standardize care. Widespread adoption of electronic health records by hospitals affords the opportunity for clinicians to rapidly, and electronically evaluate protocol adherence. We reviewed the clinical data of a small sample of 7 children with status epilepticus, in order to (1) qualitatively determine the feasibility of automated data extraction and (2) demonstrate a timeline-style visualization of each patient’s first 24 hours of care. Qualitatively, our observations indicate that most clinical data are well labeled in structured fields within the electronic health record, though some important information, particularly electroencephalography (EEG) data, may require manual abstraction. We conclude that a visualization that clarifies a patient’s clinical course can be automatically created using the patient’s electronic clinical data, supplemented with some manually abstracted data. Future work could use this timeline to evaluate adherence to status epilepticus clinical protocols.

Health IT Usability Focus Section: Adapting EHR-Based Medication Instructions to Comply with Plain Language Guidance—A Randomized Experiment

INTRODUCTION When we started using telemedicine to treat low acuity patients in the emergency department (ED), we assumed that this voluntary treatment pathway would primarily be used by younger patients. We were surprised to find that a significant portion of patients evaluated by telemedicine were older adults. MATERIALS AND METHODS We conducted a retrospective cohort study of quality assurance data. Adult ED patients at an urban academic medical center who had their care provided by telemedicine from July 2016 to September 2017 were included. We measured demographic characteristics, ED length of stay (LOS), triage severity score, X-ray orders placed, ED revisit within 72 h, need for change in treatment plan or admission on 72-h return, and patient satisfaction. RESULTS Of 1,592 patients evaluated, 18% were age 65 and older. Older patients were more likely to be evaluated for wound care and less likely to be evaluated for nontraumatic connective tissue illnesses. Older patients also had shorter median LOS (59 min vs. 63 min). Unplanned 72-h return (2% vs. 2%), likelihood to have a change in treatment on return (1% vs. 0.2%), and patient satisfaction were similar between age groups. The percentage of patients who returned in 72 h requiring admission were similar between age groups (0.4% vs. 0.1% p = 0.325). Sensitivity analysis with an age threshold at 75 years did not change primary results. CONCLUSION These findings suggest that among low acuity patients there are groups of older adults for whom an ED telemedicine evaluation can provide safe and effective medical care that is satisfactory to patients.

Barriers to Genetic Testing for Pediatric Medicaid Beneficiaries With Epilepsy

OBJECTIVES Although electronic patient portals are offered by most health care organizations, poor usability and poor fit to patient needs may pose barriers to adoption. We collaborated with an academic hospital to conduct iterative user evaluation of a newly deployed portal designed to deliver inpatient data upon hospital discharge. METHODS Three evaluators applied heuristic usability evaluation and conducted 23 individual user testing sessions with patients with chronic disease or managing the care of family members with chronic disease. Evaluation and development/improvement were conducted iteratively. User testing and analysis of qualitative data were both conducted from the perspective of a task-technology fit framework, to assess the degree of fit between the portal and patient work. RESULTS Ability to complete health information management tasks, perceived usability, and positive comments from users improved over the course of the iterative development. However, patients still encountered significant difficulties accomplishing certain tasks such as setting up proxy accounts. The problems were most severe when patients did not start with a clear understanding of tasks that they could accomplish. In exploring the portal, novice users frequently described anecdotes from their own medical history or constructed fictional narratives about a hypothetical patient. CONCLUSION Chronic illness imposes a significant workload on patients, and applying a task-technology framework for evaluation of a patient portal helped improve the portals fit to patient needs. However, it also revealed that patients often lack a clear understanding of tasks that would help them accomplish personal health information management. Portal developers may need to educate patients about types of patient work involving medical centers, in a way that developers of clinical information systems do not need to do. An approach to doing this might be to provide narratives about hypothetical patients.