Suppressed thyroid stimulating hormone levels after initiation of a subcutaneous glucagon-like peptide-1 receptor agonist in a post-thyroidectomy patient managed with levothyroxine case report.

OBJECTIVES: Glucagon-like peptide-1 receptor agonist (GLP-1 RA) therapy has demonstrated an increased risk of thyroid C-cell hyperplasia and C-cell tumors in rodents. Due to this risk, a boxed warning for this drug class exists for people with a personal or family history of medullary thyroid carcinoma or multiple endocrine neoplasia syndrome type 2. There is a lack of data regarding any possible effect of GLP-1 RA therapy on serum thyroid levels. The objective of this case report is to describe a case of suppressed thyroid stimulating hormone levels after initiation of a subcutaneous semaglutide in a post-total thyroidectomy patient managed with levothyroxine in order to highlight the need for closer monitoring of these patients and further research in this area. CASE SUMMARY: The patient described in the case underwent a total thyroidectomy in 2015 with stable thyroid hormone replacement requirements with levothyroxine for 5 years until the initiation and titration of subcutaneous semaglutide. The reduction in thyroid stimulating hormone (TSH) after starting GLP-1 RA therapy necessitated a 25 percent dose reduction of levothyroxine from her original dose. PRACTICE IMPLICATIONS: This patient experienced suppressed TSH levels following initiation and titration of subcutaneous semaglutide. The etiology of these changes may be related to the direct effects of GLP-1 RA therapy on TSH levels, changes in absorption related to delayed gastric emptying rates, secondary to GLP-1 RA-associated weight loss, or a combination of these proposed mechanisms. It may be prudent to exercise more frequent monitoring of medications that require weight-based dosing and those with a narrow therapeutic index when initiating and titrating GLP-1 RA-based therapies and is an area of potential study.

Should parents see their teen's medical record? Asking about the effect on adolescent-doctor communication changes attitudes.

Objective: Parents routinely access young children's medical records, but medical societies strongly recommend confidential care during adolescence, and most medical centers restrict parental records access during the teen years. We sought to assess public opinion about adolescent medical privacy. Materials and Methods: The Cornell National Social Survey (CNSS) is an annual nationwide public opinion survey. We added questions about a) whether parents should be able to see their 16-year-old child's medical record, and b) whether teens would avoid discussing sensitive issues (sex, alcohol) with doctors if parents could see the record. Hypothesizing that highlighting the rationale for adolescent privacy would change opinions, we conducted an experiment by randomizing question order. Results: Most respondents (83.0%) believed that an adolescent would be less likely to discuss sensitive issues with doctors with parental medical record access; responses did not differ by question order (P = .29). Most also believed that parents should have access to teens' records, but support for parental access fell from 77% to 69% among those asked the teen withholding question first (P = .01). Conclusions: Although medical societies recommend confidential care for adolescents, public opinion is largely in favor of parental access. A brief "nudge," asking whether parental access might harm adolescent-doctor communication, increased acceptance of adolescent confidentiality, and could be part of a strategy to prepare parents for electronic patient portal policies that medical centers impose at the beginning of adolescence.

Variability in adolescent portal privacy features: how the unique privacy needs of the adolescent patient create a complex decision-making process.

Objective: Medical privacy policies, which are clear-cut for adults and young children, become ambiguous during adolescence. Yet medical organizations must establish unambiguous rules about patient and parental access to electronic patient portals. We conducted a national interview study to characterize the diversity in adolescent portal policies across a range of institutions and determine the factors influencing decisions about these policies. Methods: Within a sampling framework that ensured diversity of geography and medical organization type, we used purposive and snowball sampling to identify key informants. Semi-structured interviews were conducted and analyzed with inductive thematic analysis, followed by a member check. Results: We interviewed informants from 25 medical organizations. Policies established different degrees of adolescent access (from none to partial to complete), access ages (from 10 to 18 years), degrees of parental access, and types of information considered sensitive. Federal and state law did not dominate policy decisions. Other factors in the decision process were: technology capabilities; differing patient population needs; resources; community expectations; balance between information access and privacy; balance between promoting autonomy and promoting family shared decision-making; and tension between teen privacy and parental preferences. Some informants believed that clearer standards would simplify policy-making; others worried that standards could restrict high-quality polices. Conclusions: In the absence of universally accepted standards, medical organizations typically undergo an arduous decision-making process to develop teen portal policies, weighing legal, economic, social, clinical, and technological factors. As a result, portal access policies are highly inconsistent across the United States and within individual states.

The need for guidance and consistency in adolescent privacy policies: a survey of CMIOs.

Research examining whether and how adolescent patients should gain access to their electronic health records is gaining momentum. We conducted a survey to explore diversity in adolescent privacy policies and identify common approaches in health information technology management for adolescent patients. Through descriptive analyses of survey data, we found a wide range of institutional policies regarding adolescent patient privacy, and large variations in health IT executives' baseline knowledge of access policies. A majority of respondents agreed that formal guidelines pertaining to adolescent health record privacy would be helpful. Respondents suggested that these guidelines can be developed through the synthesis of multiple perspectives, including those of pediatricians, adolescent specialists, privacy experts, parents, patient advocates, and other professional entities.

Design Features in Games for Health: Disciplinary and Interdisciplinary Expert Perspectives.

Games for health (G4H) aim to improve health outcomes and encourage behavior change. While existing theoretical frameworks describe features of both games and health interventions, there has been limited systematic investigation into how disciplinary and interdisciplinary stakeholders understand design features in G4H. We recruited 18 experts from the fields of game design, behavioral health, and games for health, and prompted them with 16 sample games. Applying methods including open card sorting and triading, we elicited themes and features (e.g., real-world interaction, game mechanics) around G4H. We found evidence of conceptual differences suggesting that a G4H perspective is not simply the sum of game and health perspectives. At the same time, we found evidence of convergence in stakeholder views, including areas where game experts provided insights about health and vice versa. We discuss how this work can be applied to provide conceptual tools, improve the G4H design process, and guide approaches to encoding G4H-related data for large-scale empirical analysis.

Self-tracking for Mental Wellness: Understanding Expert Perspectives and Student Experiences.

Previous research suggests an important role for self-tracking in promoting mental wellness. Recent studies with college student populations have examined the feasibility of collecting everyday mood, activity, and social data. However, these studies do not account for students' experiences and challenges adopting self-tracking technologies to support mental wellness goals. We present two studies conducted to better understand self-tracking for stress management and mental wellness in student populations. First, focus groups and card sorting activities with 14 student health professionals reveal expert perspectives on the usefulness of tracking for three scenarios. Second, an online survey of 297 students examines personal experiences with self-tracking and attitudes toward sharing self-tracked data with others. We draw on findings from these studies to characterize students' motivations, challenges, and preferences in collecting and viewing self-tracked data related to mental wellness, and we compare findings between students with diagnosed mental illnesses and those without. We conclude with a discussion of challenges and opportunities in leveraging self-tracking for mental wellness, highlighting several design considerations.

Supporting Families in Reviewing and Communicating about Radiology Imaging Studies.

Diagnostic radiology reports are increasingly being made available to patients and their family members. However, these reports are not typically comprehensible to lay recipients, impeding effective communication about report findings. In this paper, we present three studies informing the design of a prototype to foster patient-clinician communication about radiology report content. First, analysis of questions posted in online health forums helped us identify patients' information needs. Findings from an elicitation study with seven radiologists provided necessary domain knowledge to guide prototype design. Finally, a clinical field study with 14 pediatric patients, their parents and clinicians, revealed positive responses of each stakeholder when using the prototype to interact with and discuss the patient's current CT or MRI report and allowed us to distill three use cases: co-located communication, preparing for the consultation, and reviewing radiology data. We draw on our findings to discuss design considerations for supporting each of these use cases.

Patient Experiences Using an Inpatient Personal Health Record.

OBJECTIVE: To investigate patients' experience using an inpatient personal health record (PHR) on a tablet computer to increase engagement in their hospital care. METHODS: We performed observations and conducted semi-structured interviews with 14 post-operative cardiac surgical patients and their family members who received an inpatient PHR. Themes were identified using an inductive coding scheme. RESULTS: All participants responded favorably to having access to view their clinical information. A majority (85.7%) of participants used the application following an initial training session. Patients reported high satisfaction with being able to view their hospital medications and access educational materials related to their medical conditions. Patients reported a desire to view daily progress reports about their hospital stay and have access to educational information about their post-acute recovery. In addition, patients expressed a common desire to view their diagnoses, laboratory test results, radiology reports, and procedure notes in language that is patient-friendly. CONCLUSION: Patients have unmet information needs in the hospital setting. Our findings suggest that for some inpatients and their family members, providing personalized health information through a tablet computer may improve satisfaction, decrease anxiety, increase understanding of their health conditions, and improve safety and quality of care.

Interactive tools for inpatient medication tracking: a multi-phase study with cardiothoracic surgery patients.

OBJECTIVE: Prior studies of computing applications that support patients' medication knowledge and self-management offer valuable insights into effective application design, but do not address inpatient settings. This study is the first to explore the design and usefulness of patient-facing tools supporting inpatient medication management and tracking. MATERIALS AND METHODS: We designed myNYP Inpatient, a custom personal health record application, through an iterative, user-centered approach. Medication-tracking tools in myNYP Inpatient include interactive views of home and hospital medication data and features for commenting on these data. In a two-phase pilot study, patients used the tools during cardiothoracic postoperative care at Columbia University Medical Center. In Phase One, we provided 20 patients with the application for 24-48 h and conducted a closing interview after this period. In Phase Two, we conducted semi-structured interviews with 12 patients and 5 clinical pharmacists who evaluated refinements to the tools based on the feedback received during Phase One. RESULTS: Patients reported that the medication-tracking tools were useful. During Phase One, 14 of the 20 participants used the tools actively, to review medication lists and log comments and questions about their medications. Patients' interview responses and audit logs revealed that they made frequent use of the hospital medications feature and found electronic reporting of questions and comments useful. We also uncovered important considerations for subsequent design of such tools. In Phase Two, the patients and pharmacists participating in the study confirmed the usability and usefulness of the refined tools. CONCLUSIONS: Inpatient medication-tracking tools, when designed to meet patients' needs, can play an important role in fostering patient participation in their own care and patient-provider communication during a hospital stay.

Care Partnerships: Toward Technology to Support Teens' Participation in Their Health Care.

Adolescents with complex chronic illnesses, such as cancer and blood disorders, must partner with family and clinical caregivers to navigate risky procedures with life-altering implications, burdensome symptoms and lifelong treatments. Yet, there has been little investigation into how technology can support these partnerships. We conducted 38 in-depth interviews (15 with teenage adolescents with chronic forms of cancer and blood disorders, 15 with their parents, and eight with clinical caregivers) along with nine non-participant observations of clinical consultations to better understand common challenges and needs that could be supported through design. Participants faced challenges primarily concerning: 1) teens' limited participation in their care, 2) communicating emotionally-sensitive information, and 3) managing physical and emotional responses. We draw on these findings to propose design goals for sociotechnical systems to support teens in partnering in their care, highlighting the need for design to support gradually evolving partnerships in care.

Adolescent and Caregiver use of a Tethered Personal Health Record System.

Supporting adolescent patient engagement in care is an important yet underexplored topic in consumer health informatics. Personal Health Records (PHRs) show potential, but designing PHR systems to accommodate both emerging adults and their parents is challenging. We conducted a mixed-methods study with teenage adolescent patients (ages 13-17) with cancer and blood disorders, and their parents, to investigate their experiences with My-Chart, a tethered PHR system. Through analyses of usage logs and independently-conducted surveys and interviews, we found that patients and parents both valued MyChart, but had different views about the role of the PHR for care communication and management, and different attitudes about its impact on the patient's ability to manage care. Specific motivations for using MyChart included patient-parent coordination of care activities, communication around hospital encounters, and support for transitioning to adult care. Finally, some parents had concerns about certain diagnostic test results being made available to their children.

Patient engagement in the inpatient setting: a systematic review.

OBJECTIVE: To systematically review existing literature regarding patient engagement technologies used in the inpatient setting. METHODS: PubMed, Association for Computing Machinery (ACM) Digital Library, Institute of Electrical and Electronics Engineers (IEEE) Xplore, and Cochrane databases were searched for studies that discussed patient engagement ('self-efficacy', 'patient empowerment', 'patient activation', or 'patient engagement'), (2) involved health information technology ('technology', 'games', 'electronic health record', 'electronic medical record', or 'personal health record'), and (3) took place in the inpatient setting ('inpatient' or 'hospital'). Only English language studies were reviewed. RESULTS: 17 articles were identified describing the topic of inpatient patient engagement. A few articles identified design requirements for inpatient engagement technology. The remainder described interventions, which we grouped into five categories: entertainment, generic health information delivery, patient-specific information delivery, advanced communication tools, and personalized decision support. CONCLUSIONS: Examination of the current literature shows there are considerable gaps in knowledge regarding patient engagement in the hospital setting and inconsistent use of terminology regarding patient engagement overall. Research on inpatient engagement technologies has been limited, especially concerning the impact on health outcomes and cost-effectiveness.

Patient-Centered Tools for Medication Information Search.

Recent research focused on online health information seeking highlights a heavy reliance on general-purpose search engines. However, current general-purpose search interfaces do not necessarily provide adequate support for non-experts in identifying suitable sources of health information. Popular search engines have recently introduced search tools in their user interfaces for a range of topics. In this work, we explore how such tools can support non-expert, patient-centered health information search. Scoping the current work to medication-related search, we report on findings from a formative study focused on the design of patient-centered, medication-information search tools. Our study included qualitative interviews with patients, family members, and domain experts, as well as observations of their use of Remedy, a technology probe embodying a set of search tools. Post-operative cardiothoracic surgery patients and their visiting family members used the tools to find information about their hospital medications and were interviewed before and after their use. Domain experts conducted similar search tasks and provided qualitative feedback on their preferences and recommendations for designing these tools. Findings from our study suggest the importance of four valuation principles underlying our tools: credibility, readability, consumer perspective, and topical relevance.

Human factors in computing systems: focus on patient-centered health communication at the ACM SIGCHI conference.

Health Information Technologies, such as electronic health records (EHR) and secure messaging, have already transformed interactions among patients and clinicians. In addition, technologies supporting asynchronous communication outside of clinical encounters, such as email, SMS, and patient portals, are being increasingly used for follow-up, education, and data reporting. Meanwhile, patients are increasingly adopting personal tools to track various aspects of health status and therapeutic progress, wishing to review these data with clinicians during consultations. These issues have drawn increasing interest from the human-computer interaction (HCI) community, with special focus on critical challenges in patient-centered interactions and design opportunities that can address these challenges. We saw this community presenting and interacting at the ACM SIGCHI 2013, Conference on Human Factors in Computing Systems, (also known as CHI), held April 27-May 2nd, 2013 at the Palais de Congrès de Paris in France. CHI 2013 featured many formal avenues to pursue patient-centered health communication: a well-attended workshop, tracks of original research, and a lively panel discussion. In this report, we highlight these events and the main themes we identified. We hope that it will help bring the health care communication and the HCI communities closer together.

Patient-Clinician Communication: The Roadmap for HCI.

Effective communication between patients and their clinicians during clinical encounters has a positive impact on health outcomes. Technology has the potential to help transform this synchronous interaction, but researchers are still at early stages of developing interventions to assess and improve patient-clinician communication. In this workshop, we envision opening up a dialogue among researchers and clinicians who wish to discuss directions for future research in this domain. In particular, the workshop will focus on exploring how technologies available today, as well as projected for the future, can support the communication needs of clinicians and patients.

Designing Inpatient Technology to Meet the Medication Information Needs of Cardiology Patients.

As patients are encouraged to become active participants in their own care, recent research has begun to explore the direct sharing of electronic health information with patients during hospital visits. The design of patient-facing views of clinical information is, however, a relatively recent line of inquiry. Research is needed to further understand guidelines for communicating specific types of information to hospital patients. In this work, we focus on cardiology patients' information needs related to their hospital medications. We assessed these needs to inform the design of interactive, electronic views of medication information for cardiology inpatients. We present results of in-situ interviews with 11 inpatients and 6 nurses in a cardiology step-down unit. Our findings suggest that cohesive trends in medication information needs exist across cardiology inpatients. We discuss interview results and their implications for the design of inpatient-facing information technology. We also discuss key ways in which electronic medication information, formatted for inpatient use, differs from that formatted for outpatient or transitional medication-management use.

Workarounds used by nurses to overcome design constraints of electronic health records.

Adoption of electronic health records (EHRs) has the potential to assist with clinical reasoning and streamline workflow; however, the data entry and review capabilities of most systems are suboptimal which may lead to workarounds. As an instance of a workaround, we examined nurses' use of optional free-text comments in EHR flowsheets to support clinical needs for data interpretation. This mixed-method study included: 1) Content analysis of comments, 2) Interviews with nurses. We performed a sub-analysis of flowsheet data for 201 patients that experienced a cardiac arrest and interviewed 5 acute care nurses. We found that nurses used workarounds in the EHR - despite the extra effort that they required - to convey clinically significant relationships and to communicate concerning events to physicians. EHRs should better support entry of clinical data that "belongs together" and enable messaging capabilities integrated with nurses' flowsheet documentation workflow.

A tablet computer application for patients to participate in their hospital care.

Building on our institution's commercial electronic health record and custom personal health record Web portal, we developed a tablet computer application to provide interactive information to hospital patients. Using Apple iPad devices, the prototype application was provided to five patients in a cardiology step-down unit. We conducted detailed interviews to assess patients' knowledge of their inpatient care, as well as their perceptions of the usefulness of the application. While patients exhibited varying levels of comfort with using the tablet computer, they were highly enthusiastic about the application's ability to supply health information such as their inpatient medication histories and photographs of their care providers. Additional research is warranted to assess the benefit such applications may have for addressing inpatient information needs, enhancing patient-provider communication and improving patient satisfaction.

Awareness of the Care Team in Electronic Health Records.

OBJECTIVE: To support collaboration and clinician-targeted decision support, electronic health records (EHRs) must contain accurate information about patients' care providers. The objective of this study was to evaluate two approaches for care provider identification employed within a commercial EHR at a large academic medical center. METHODS: We performed a retrospective review of EHR data for 121 patients in two cardiology wards during a four-week period. System audit logs of chart accesses were analyzed to identify the clinicians who were likely participating in the patients' hospital care. The audit log data were compared with two functions in the EHR for documenting care team membership: 1) a vendor-supplied module called "Care Providers", and 2) a custom "Designate Provider" order that was created primarily to improve accuracy of the attending physician of record documentation. RESULTS: For patients with a 3-5 day hospital stay, an average of 30.8 clinicians accessed the electronic chart, including 10.2 nurses, 1.4 attending physicians, 2.3 residents, and 5.4 physician assistants. The Care Providers module identified 2.7 clinicians/patient (1.8 attending physicians and 0.9 nurses). The Designate Provider order identified 2.1 clinicians/patient (1.1 attending physicians, 0.2 resident physicians, and 0.8 physician assistants). Information about other members of patients' care teams (social workers, dietitians, pharmacists, etc.) was absent. CONCLUSIONS: The two methods for specifying care team information failed to identify numerous individuals involved in patients' care, suggesting that commercial EHRs may not provide adequate tools for care team designation. Improvements to EHR tools could foster greater collaboration among care teams and reduce communication-related risks to patient safety.

Characterizing Patient-Friendly "Micro-Explanations" of Medical Events.

Patients' basic understanding of clinical events has been shown to dramatically improve patient care. We propose that the automatic generation of very short micro-explanations, suitable for real-time delivery in clinical settings, can transform patient care by giving patients greater awareness of key events in their electronic medical record. We present results of a survey study indicating that it may be possible to automatically generate such explanations by extracting individual sentences from consumer-facing Web pages. We further inform future work by characterizing physician and non-physician responses to a variety of Web-extracted explanations of medical lab tests.