Use of Social Media for Health Advocacy for Digital Communities: Descriptive Study.

BACKGROUND: There has been a growth surge in the use of social media among individuals today. The widespread adoption of these platforms, coupled with their engaging features, presents a unique opportunity for the dissemination of health advocacy information. Social media is known as a powerful tool used to share health policy and advocacy efforts and disseminate health information to digital community members and networks. Yet, there is still a gap in the full exploitation of this powerful instrument, among health care professionals, for health advocacy campaigns. OBJECTIVE: This paper aims to describe the process of mobilizing social media platforms such as Twitter (rebranded to X Corp in 2023) for health advocacy of the digital community. Additionally, it aims to share the lessons and insights gained during this digital health advocacy engagement process. METHODS: We performed a comprehensive review of Twitter analytical data to examine the impact of our social media posts. We then consolidated these analytic reports with our meeting logs to describe our systematic, iterative, and collaborative design process to implement social media efforts and generate key lessons learned. RESULTS: Our review of monthly Twitter analytical reports and regular team meeting logs revealed several themes for successful and less successful practices in relation to our social media-based health advocacy efforts. The successful practices noted by the team included using personable, picture-based tweets; using a series of posts on a particular topic rather than an isolated post; leveraging team members' and partners' collaborations in shared posts; incorporating hashtags in tweets; using a balanced mix of texts and graphics in posts; using inclusive (nondestigmatizing) languages in tweeted posts; and use of polls to share tweets. Among the many lessons learned, we also experienced limitations including a lack of comprehensive statistics on Twitter usage for health care-related purposes such as health advocacy and limits in collating the estimates of the actual impact made on the intended digital community members by our posts. CONCLUSIONS: Twitter has been successfully used in promoting health advocacy content, and the social media team aims to explore other social media platforms that have a wider reach than Twitter. We will continue making necessary adjustments in strategies, techniques, and styles to engage the audience as we expand onto new platforms like Instagram and TikTok for health advocacy promotions.

Co-Designing an Initiative to Increase Shared Access to Older Adults' Patient Portals: Stakeholder Engagement.

BACKGROUND: The patient portal is a widely available secure digital platform offered by care delivery organizations that enables patients to communicate electronically with clinicians and manage their care. Many organizations allow patients to authorize family members or friends-"care partners"-to share access to patient portal accounts, thus enabling care partners to receive their own identity credentials. Shared access facilitates trilateral information exchange among patients, clinicians, and care partners; however, uptake and awareness of this functionality are limited. OBJECTIVE: We partnered with 3 health care organizations to co-design an initiative that aimed to increase shared access registration and use and that can be implemented using existing patient portals. METHODS: In 2020, we undertook a rigorous selection process to identify 3 geographically diverse health care organizations that had engaged medical informatics teams and clinical champions within service delivery lines caring for older adults. We prioritized selecting organizations that serve racially and socioeconomically diverse populations and possess sophisticated reporting capabilities, a stable patient portal platform, a sufficient volume of older adult patients, and active patient and family advisory councils. Along with patients and care partners, clinicians, staff, and other stakeholders, the study team co-designed an initiative to increase the uptake of shared access guided by either an iterative, human-centered design process or rapid assessment procedures of stakeholders' inputs. RESULTS: Between February 2020 and April 2022, 73 stakeholder engagements were conducted with patients and care partners, clinicians and clinic staff, medical informatics teams, marketing and communications staff, and administrators, as well as with funders and thought leaders. We collected insights regarding (1) barriers to awareness, registration, and use of shared access; (2) features of consumer-facing educational materials to address identified barriers; (3) features of clinician- and staff-facing materials to address identified barriers; and (4) approaches to fit the initiative into current workflows. Using these inputs iteratively via a human-centered design process, we produced brochures and posters, co-designed organization-specific web pages detailing shared access registration processes, and developed clinician and staff talking points about shared access and staff tip sheets that outline shared access registration steps. Educational materials emphasized the slogan "People remember less than half of what their doctors say," which was selected from 9 candidate alternatives as resonating best with the full range of the initiative's stakeholders. The materials were accompanied by implementation toolkits specifying and reinforcing workflows involving both in-person and telehealth visits. CONCLUSIONS: Meaningful and authentic stakeholder engagement allowed our deliberate, iterative, and human-centered co-design aimed at increasing the use of shared access. Our initiative has been launched as a part of a 12-month demonstration that will include quantitative and qualitative analysis of registration and use of shared access. Educational materials are publicly available at Coalition for Care Partners.

Methods and operational aspects of human-centred design into research processes for individuals with multiple chronic conditions: A survey study.

AIM: To examine ways in which human-centred design was integrated into a nursing school's research processes involving individuals with multiple chronic conditions. DESIGN: Cross-sectional survey study. METHODS: Three surveys were sent out, with surveys 1 and 2 involving faculty who had worked closely with design strategists and survey 3 as a school-wide survey eliciting experience with human-centred design, respectively. RESULTS: Survey respondents (n = 7 for surveys 1 and 2 and n = 36 for survey 3) had no or minimal experience with human-centred design. Faculty respondents indicated it helped engaging various stakeholders, particularly in intervention development. Key lessons learned included: (1) the importance of designer involvement from study conception, (2) distinguishing a design strategist's skillset from strictly visual design, (3) challenges during the ethical review processes, and (4) sustainability of resources. The dynamic approach of human-centred design has benefited our efforts to advance the science of caring for individuals with multiple chronic conditions.

Human centered design workshops as a meta-solution to diagnostic disparities.

OBJECTIVES: Diagnostic errors - inaccurate or untimely diagnoses or failures to communicate diagnoses - are harmful and costly for patients and health systems. Diagnostic disparities occur when diagnostic errors are experienced at disproportionate rates by certain patient subgroups based, for example, on patients' age, sex/gender, or race/ethnicity. We aimed to develop and test the feasibility of a human centered design workshop series that engages diverse stakeholders to develop solutions for mitigating diagnostic disparities. METHODS: We employed a series of human centered design workshops supplemented by semi-structured interviews and literature evidence scans. Co-creation sessions and rapid prototyping by patient, clinician, and researcher stakeholders were used to generate design challenges, solution concepts, and prototypes. RESULTS: A series of four workshops attended by 25 unique participants was convened in 2019-2021. Workshops generated eight design challenges, envisioned 29 solutions, and formulated principles for developing solutions in an equitable, patient-centered manner. Workshops further resulted in the conceptualization of 37 solutions for addressing diagnostic disparities and prototypes for two of the solutions. Participants agreed that the workshop processes were replicable and could be implemented in other settings to allow stakeholders to generate context-specific solutions. CONCLUSIONS: The incorporation of human centered design through a series of workshops promises to be a productive way of engaging patient-researcher stakeholders to mitigate and prevent further exacerbation of diagnostic disparities. Healthcare stakeholders can apply human centered design principles to guide thinking about improving diagnostic performance and to center diverse patients' needs and experiences when implementing quality and safety improvements.

Strengths-building through life purpose, self-care goal setting and social support: Study protocol for Caregiver Support.

Background: For caregivers of people with heart failure, addressing a range of care recipient needs at home can potentially be burdensome, but caregivers may also gain meaning from caregiving. The Caregiver Support Program, a multicomponent strengths-based intervention, is designed to improve outcomes of heart failure caregivers. Objectives: 1) Test the feasibility and gauge an initial effect size of the Caregiver Support Program to improve caregiver quality of life (primary outcome), and fatigue and burden (secondary outcomes) from baseline to 16 weeks, 2) test whether fatigue and caregiver burden are associated with objective measures of resilience (sweat inflammatory cytokines (Il-6 and IL-10) and self-reported resilience, 3) evaluate changes in heart rate variability, IL-6 and IL-10, pre- and post-intervention. Methods: This is a single-blind, two group, waitlist control trial. Eligible caregivers are 1) ≥ 18 years, 2) English speaking, 3) live with the person with heart failure or visit them at least 3 days per week to provide care, 4) provide support for at least 1 instrumental activity of daily living (IADL), 5) live within a 1 h driving radius of the Johns Hopkins Hospital, and 6) the care-recipient has been hospitalized within the last 6 months. Trial participants are randomized into the immediate intervention (n = 24) or waitlist control group (n = 24). Data collection is at baseline, 16 weeks, and 32 weeks. Conclusion: The Caregiver Support program has the potential to increase quality of life and decrease fatigue and caregiver burden for caregivers of people with heart failure and multiple co-morbidities.