Applying human-centered design to the construction of a cirrhosis management clinical decision support system.

BACKGROUND: Electronic health record (EHR)-based clinical decision support is a scalable way to help standardize clinical care. Clinical decision support systems have not been extensively investigated in cirrhosis management. Human-centered design (HCD) is an approach that engages with potential users in intervention development. In this study, we applied HCD to design the features and interface for a clinical decision support system for cirrhosis management, called CirrhosisRx. METHODS: We conducted technical feasibility assessments to construct a visual blueprint that outlines the basic features of the interface. We then convened collaborative-design workshops with generalist and specialist clinicians. We elicited current workflows for cirrhosis management, assessed gaps in existing EHR systems, evaluated potential features, and refined the design prototype for CirrhosisRx. At the conclusion of each workshop, we analyzed recordings and transcripts. RESULTS: Workshop feedback showed that the aggregation of relevant clinical data into 6 cirrhosis decompensation domains (defined as common inpatient clinical scenarios) was the most important feature. Automatic inference of clinical events from EHR data, such as gastrointestinal bleeding from hemoglobin changes, was not accepted due to accuracy concerns. Visualizations for risk stratification scores were deemed not necessary. Lastly, the HCD co-design workshops allowed us to identify the target user population (generalists). CONCLUSIONS: This is one of the first applications of HCD to design the features and interface for an electronic intervention for cirrhosis management. The HCD process altered features, modified the design interface, and likely improved CirrhosisRx's overall usability. The finalized design for CirrhosisRx proceeded to development and production and will be tested for effectiveness in a pragmatic randomized controlled trial. This work provides a model for the creation of other EHR-based interventions in hepatology care.

Streamlining Care in Crisis: Rapid Creation and Implementation of a Digital Support Tool for COVID-19.

The unprecedented COVID-19 pandemic has resulted in rapidly evolving best practices for transmission reduction, diagnosis, and treatment. A regular influx of new information has upended traditionally static hospital protocols, adding additional stress and potential for error to an already overextended system. To help equip frontline emergency clinicians with up-to-date protocols throughout the evolving COVID-19 crisis, our team set out to create a dynamic digital tool that centralized and standardized resources from a broad range of platforms across our hospital. Using a design thinking approach, we rapidly built, tested, and deployed a solution using simple, out-of-the-box web technology that enables clinicians to access the specific information they seek within moments. This platform has been rapidly adopted throughout the emergency department, with up to 70% of clinicians using the digital tool on any given shift and 78.6% of users reporting that they "agree" or "strongly agree" that the platform has affected their management of COVID-19 patients. The tool has also proven easily adaptable, with multiple protocols being updated nearly 20 times over two months without issue. This paper describes our development process, challenges, and results to enable other institutions to replicate this process to ensure consistent, high-quality care for patients as the COVID-19 pandemic continues its unpredictable course.

Patient and clinician perspectives on a patient-facing dashboard that visualizes patient reported outcomes in rheumatoid arthritis.

BACKGROUND: Poor patient-clinician communication around patient-reported outcomes (PROs) is a barrier to the effective management of rheumatoid arthritis (RA). We aimed to develop an RA 'dashboard' that could facilitate conversations about PROs and that would be acceptable to a wide range of patients, including English and Spanish speakers and patients with adequate or limited health literacy. METHODS: A diverse group of RA patients along with clinicians from two academic rheumatology clinics joined separate focus groups. We solicited feedback and made iterative changes to mock-ups of an RA dashboard that visualized PROs using a human-centred design process. We used the thematic analysis method to identify and characterize themes from the focus groups and used these insights to refine the dashboard. RESULTS: We conducted six focus groups involving 25 RA patients and three groups with 11 clinicians. Patients and clinicians agreed that the dashboard could enhance communication about PROs and RA disease activity and could promote patient self-management. Patients varied in their (a) comprehension, (b) preferences for the display and features of the dashboard, and (c) desired uses for the dashboard. Clinicians expressed significant concerns about the logistics of using the dashboard in clinical practice. CONCLUSION: Using principles of human-centred design, we created an RA dashboard that was well-accepted among patients and clinicians. The ability to customize the data display is important for tailoring the dashboard to patients with diverse needs and preferences. Special attention should be given to feasibility concerns voiced by clinicians.

We are family: designing and developing a mobile health application for the San Francisco bay area House Ball and Gay Family communities.

BACKGROUND: The House Ball community (HBC) and its affiliated Gay Families (GFs) consist of predominantly African American and Latinx sexual, gender, and ethnic minorities (SGEM), who form chosen families often as a way to provide support, and in the case of the HBC, to constitute houses that then compete in performative categories in balls. Members of both communities are disproportionately impacted by HIV. Although public health professionals have engaged with the HBC and GFs to improve HIV testing and clinical care, most intervention activities have relied on in-person modes of outreach and delivery. Little research has been conducted with the members of the HBC and GFs to develop and produce culturally-informed mobile health (mHealth) applications that would enable them to increase HIV-related knowledge, connect to HIV-related resources, receive HIV health support, and to celebrate their unique identities and communities in a safe space. METHODS: We conducted 45 in-depth interviews with HBC and GF members who attended balls. Topics included HIV-related health needs, suggestions for mHealth components, current usage of apps and desirable features, and wishes around privacy and security. Following analysis of the interview data, we convened a series of four workshops with N=15 participants who were split into two groups. The purpose of the workshops was to co-design a digital tool to help provide information, reduce HIV-related stigma, and locate HIV resources for participants. Each group attended two workshops. Data were analyzed by a team of social scientists, community members, and mobile health experts. Findings were used to design an mHealth app related to HIV prevention and care. RESULTS: Participants requested an app that clearly reflected the community. The desired features of the app included accurate information and education on HIV transmission; links to resources such as HIV testing, lube and condoms, PrEP, and other health-related services; and the ability to rate and review local resources. In workshops, participants proposed several design elements and functions for the app. It had to be 'Mobile and Modern', 'Relatable, Raw, and "Reflective of Me"', 'Positive and Fun', feature community-generated content, and provide a safe space for users. Using these clear directives, the team designed an mHealth tool to be fielded as part of the larger "We Are Family" intervention that would provide HIV-specific information, resources, and support in a platform that was congruent with community norms and expectations. CONCLUSIONS: Designing and fielding an mHealth app as part of a larger HIV prevention intervention that reflects the social support and relationships within existing House Ball and Gay Family communities allows those youth most at risk for HIV-related health disparities to gain access to HIV testing, or link and re-engage young people to care.

WYZ: a pilot study protocol for designing and developing a mobile health application for engagement in HIV care and medication adherence in youth and young adults living with HIV.

INTRODUCTION: Youth and young adults bear a disproportionate share of the HIV burden and there is a critical need for interventions to curb health disparities experienced among these age groups. The purpose of our research is to build on our theory-guided model and formative research to develop a mobile health application, called WYZ, for improved engagement in HIV care and antiretroviral therapy adherence, and pilot test it among youth and young adults living with HIV (YLWH). In this paper, we explain the design and development of WYZ for YLWH, describe the design of a forthcoming pilot trial for evaluating the feasibility and acceptability of WYZ and compare WYZ with other mobile health applications being developed to improve engagement in HIV care and antiretroviral medication adherence. METHODS AND ANALYSIS: We used an agile methodology, shown to be useful in software development, and elicited feedback during beta testing to develop WYZ. WYZ is a modular, adaptive and personalised intervention delivered via a mobile phone. It is grounded in the information, motivation, behaviouralskills model which has been valuable for understanding and guiding the development of interventions for complex health behaviours. WYZ was created in collaboration with YLWH aged 18-29 years using a human-centred design approach that emphasises understanding the perspective of the users of the technology. WYZ is intended to improve engagement in HIV care by: (1) enhancing medication adherence self-efficacy, (2) increasing awareness and use of community resources, (3) reducing barriers to communication between youth and their healthcare team, and (4) providing a secure platform for the formation of a private online community of YLWH. We will conduct a 6-month single-arm pilot study to examine feasibility and acceptability of WYZ among 76 YLWH who live or receive care in the San Francisco Bay Area. All study activities, including recruitment, screening, enrolment, study assessments, provision of incentives and exit interviews, will be conducted remotely. We will explore feasibility and acceptability outcomes of the intervention using quantitative and qualitative methods. ETHICS AND DISSEMINATION: Study staff will obtain written consent for study participation from all participants. This study and its protocols have been approved by the University of California San Francisco (UCSF) Institutional Review Board. Study staff will work with the UCSF Center for AIDS Prevention Studies' Community Engagement Core and the Youth Advisory Panel to disseminate results to the participants and the community using presentations, community forums, journal publications and/or social media. TRIAL REGISTRATION NUMBER: NCT03587857; Pre-results.

"Am I OK?" using human centered design to empower rheumatoid arthritis patients through patient reported outcomes.

OBJECTIVE: Use of patient reported outcomes (PROs) in the routine care of rheumatoid arthritis (RA) has been shown to improve health outcomes, However, integration of PROs into the clinical visit is inconsistent. We aimed to develop a "dashboard" for RA patients to display relevant PRO measures for discussion during a routine RA clinical visit. METHODS: Patients (N = 45) and providers (N = 12) were recruited from rheumatology clinics at a university center and a safety net hospital. Using a human-centered design process involving patients, clinicians, designers, and health-IT experts, we performed interviews, clinic observations, and focus groups, which subsequently guided an iterative phase of prototype testing. RESULTS: RA patients and their providers shared the goals of assessing wellbeing and developing a personalized treatment plan. We found conflicting views of which data were most important for guiding decision-making and for answering the patient's overarching question of "Am I OK?" CONCLUSION: The final dashboard simplified the display of PRO data and correlated it longitudinally to the patient's medication regimen. It also included laboratory values relevant for RA care. PRACTICE IMPLICATIONS: By presenting data graphically, the dashboard may provide a platform for patients and providers to communicate around PROs and shared goals.

A Simple Pre-Exposure Prophylaxis (PrEP) Optimization Intervention for Health Care Providers Prescribing PrEP: Pilot Study.

Background: Pre-exposure prophylaxis (PrEP) has been shown to be highly effective for the prevention of HIV in clinical trials and demonstration projects, but PrEP uptake and adherence outside of these settings in the United States has been limited. Lack of knowledge and willingness of health care providers (HCPs) to prescribe PrEP is an important barrier to implementation. Objective: The objective of this study was to describe and examine the feasibility and acceptability of a PrEP Optimization Intervention (PrEP-OI) targeted at HCPs. The ultimate purpose of this intervention was to increase PrEP uptake, adherence, and persistence among those at risk for HIV acquisition. Methods: This intervention included the following: (1) a Web-based panel management tool called PrEP-Rx, which provides comprehensive HIV risk assessment, automates reminders for follow-up, and reports patients' history of PrEP use; and (2) centralized PrEP coordination by a clinical support staff member (ie, the PrEP coordinator) who can identify individuals at risk for HIV, provide medical insurance navigation, and support multiple HCPs. Feasibility was evaluated based on HCPs' ability to log in to PrEP-Rx and use it as needed. Acceptability was assessed via individual formative qualitative interviews with HCPs after 1 month of the intervention. Results: The intervention was feasible and acceptable among HCPs (N=6). HCPs identified system-level barriers to PrEP provision, many of which can be addressed by this intervention. HCPs noted that the intervention improved their PrEP knowledge; increased ease of PrEP prescription; and was likely to improve patient engagement and retention in care, enhance communication with patients, and improve patient monitoring and follow-up. Conclusions: Given the critical role HCPs serve in disseminating PrEP, we created an easy-to-use PrEP optimization intervention deemed feasible and acceptable to providers. Further research on this tool and its ability to impact the PrEP continuum of care is needed.

Development and usability evaluation of the mHealth Tool for Lung Cancer (mHealth TLC): a virtual world health game for lung cancer patients.

OBJECTIVE: To test the feasibility and usability of mHealth TLC, an interactive, immersive 3-dimensional iPad health game that coaches lung cancer patients toward assertive communication strategies during first-person virtual clinics visits. METHOD: We observed players and conducted semi-structured interviews. Research questions focused on scenario believability, the impact of technical issues, transparency of game goals, and potential of mHealth TLC to decrease lung cancer stigma (LCS) and improve patient-clinician communication. RESULTS: Eight users confirmed mHealth TLC to be: (1) believable, (2) clinic-appropriate, and (3) helpful in support of informed healthcare consumers. Concerns were expressed about emotionally charged content and plans to use mHealth TLC in clinic settings as opposed to at home. CONCLUSIONS: Although the dialog and interactions addressed emotionally charged issues, players were able to engage, learn, and benefit from role-play in a virtual world. Health games have the potential to improve patient-clinician communication, and mHealth TLC specifically may decrease LCS, and promote optimal self-management. PRACTICE IMPLICATIONS: Process reflection revealed the need for health games to be created by experienced game developers in collaboration with health care experts. To prepare for this best practice, research institutions and game developers interested in health games should proactively seek out networking and collaboration opportunities.