Financial Capability and Financial Well-Being Challenges and Vulnerabilities of Adults Living With Acquired Brain Injury: A Pilot Survey.

Objective: To describe the financial capability (FC) and financial well-being (FWB) of adults living with acquired brain injury (ABI) from a lived experience perspective. Design: People living with ABI completed a 32-item and close others a 22-item anonymous survey using either online or print/mail-in options. Setting: Responses were collected from adults in the province of Manitoba (Canada) during August-October 2021. Participants: Respondents were adults (18+) living with ABI (n=38) or close others of ABI survivors (n=19). Adults living with ABI experienced traumatic brain injury (n=22; 58%), stroke (n=8; 21%), or other ABI mechanisms (n=8; 21%). Nineteen (50%) respondents with ABI were men, 17 (45%) were women, and 1 (2.5%) was nonbinary; 95% were more than 1-year post-ABI. Close others were spouses/partners, parents, other family, and paid caregivers. Three of the 19 close others self-reported as men and 16 as women. Interventions: n/a. Main Outcome Measures: n/a. Results: For key FC indicators, 13 (34%) people living with ABI felt their current knowledge and skills were insufficient, and 26 (70%) felt that ABI had affected their ability to make financial decisions or complete financial activities. Fourteen of the 19 close others have worried about the finance-related choices, skills, or behaviors of the person living with ABI, and 17 felt that ABI symptoms had affected the FC of the person living with ABI. For key FWB indicators, 22 (58%) adults living with ABI felt stressed or anxious about finances at least some of the time. Seventeen (45%) of the adults living with ABI reported having trouble making ends meet at least some of the time. Conclusions: Respondents reported FC limitations and FWB challenges for people living with ABI, which can be indicative of financial vulnerabilities and unmet needs. Future research should explore optimal ways to address these financial-related challenges after ABI.

Security and Privacy Risks Associated With Adult Patient Portal Accounts in US Hospitals.

Importance: Patient portals can help caregivers better manage care for patients, but how caregivers access the patient portal could threaten patient security and privacy. Objective: To identify the proportions of hospitals that provide proxy accounts to caregivers of adult patients, endorse password sharing with caregivers, and enable patients to restrict the types of information seen by their caregivers. Design, Setting, and Participants: This national cross-sectional study included a telephone survey and was conducted from May 21, 2018, to December 20, 2018. The randomly selected sample comprised 1 independent hospital and 1 health system-affiliated general medical hospital from every US state and the District of Columbia. Specialty hospitals and those that did not have a patient portal in place were excluded. An interviewer posing as the daughter of an older adult patient called each hospital to ask about the hospital's patient portal practices. The interviewer used a structured questionnaire to obtain information on proxy account availability, password sharing, and patient control of their own information. Main Outcomes and Measures: The primary outcome was the proportion of hospitals that provided proxy accounts to caregivers of adult patients. Secondary outcomes were the proportion of hospitals with personnel who endorsed password sharing and the proportion that allowed adult patients to limit the types of information available to caregivers. Results: After exclusions, a total of 102 (51 health system-affiliated and 51 independent) hospitals were included in the study. Of these hospitals, 69 (68%) provided proxy accounts to caregivers of adult patients and 26 (25%) did not. In 7 of 102 hospitals (7%), the surveyed personnel did not know if proxy accounts were available. In the 94 hospitals asked about password sharing between the patient and caregiver, personnel in 42 hospitals (45%) endorsed the practice. Among hospitals that provided proxy accounts, only 13 of the 69 hospitals (19%) offered controls that enabled patients to restrict the types of information their proxies could see. Conclusions and Relevance: This study found that almost half of surveyed hospital personnel recommended password sharing and that few hospitals enabled patients to limit the types of information seen by those with proxy access. These findings suggest that hospitals and electronic health record (HER) vendors need to improve the availability and setup process of proxy accounts in a way that allows caregivers to care for patients without violating their privacy.

Older Adult Internet Use and eHealth Literacy.

We examine Internet use and eHealth literacy among older adults (aged 55+ years) who were patients at clinics serving low-income populations. Participants included 200 minority and White adults who completed interviews based on a technology acceptance conceptual model. A total of 106 participants (53.0%) used the Internet; utilization was associated with personal characteristics (age, ethnicity, education, poverty), computer characteristics (number of e-devices, computer stress), social support (marital status), and health knowledge and attitudes (health literacy, medical decision making, health information sources), but not health status. Of the 106 participants who used the Internet, 52 (49.1%) had high eHealth literacy; eHealth literacy was associated with computer characteristics (number of e-devices, computer stress), and health knowledge and attitudes (medical decision making, health information sources). In multivariate analysis, computer stress maintained a significant inverse association with eHealth literacy. Educational interventions to help older adults successfully use technology and improve eHealth literacy must be identified.

Insights Into Older Adult Patient Concerns Around the Caregiver Proxy Portal Use: Qualitative Interview Study.

BACKGROUND: Electronic patient portals have become common and offer many potential benefits for patients' self-management of health care. These benefits could be especially important for older adult patients dealing with significant chronic illness, many of whom have caregivers, such as a spouse, adult child, or other family member or friend, who help with health care management. Patient portals commonly contain large amounts of personal information, including diagnoses, health histories, medications, specialist appointments, lab results, and billing and insurance information. Some health care systems provide proxy accounts for caregivers to access a portal on behalf of a patient. It is not well known how much and in what way caregivers are using patient portals on behalf of patients and whether patients see any information disclosure risks associated with such access. OBJECTIVE: The objective of this study was to examine how older adult patients perceive the benefits and risks of proxy patient portal access by their caregivers. METHODS: We conducted semistructured interviews with 10 older adult patients with chronic illness. We asked them about their relationship with their caregivers, their use of their patient portal, their caregiver's use of the portal, and their perceptions about the benefits and risks of their caregiver's use of the portals. We also asked them about their comfort level with caregivers having access to information about a hypothetical diagnosis of a stigmatized condition. Two investigators conducted a thematic analysis of the qualitative data. RESULTS: All patients identified caregivers. Some had given caregivers access to their portals, in all cases by sharing log-in credentials, rather than by setting up an official proxy account. Patients generally saw benefits in their caregivers having access to the information and functions provided by the portal. Patients generally reported that they would be uncomfortable with caregivers learning of stigmatized conditions and also with caregivers (except spouses) accessing financial billing information. CONCLUSIONS: Patients share their electronic patient portal credentials with caregivers to receive the benefits of those caregivers having access to important medical information but are unaware of all the information those caregivers can access. Better portal design could alleviate these unwanted information disclosures.

Patient Portal Utilization Among Ethnically Diverse Low Income Older Adults: Observational Study.

BACKGROUND: Patient portals can improve patient communication with providers, provide patients with greater health information access, and help improve patient decision making, if they are used. Because research on factors facilitating and limiting patient portal utilization has not been conceptually based, no leverage points have been indicated for improving utilization. OBJECTIVE: The primary objective for this analysis was to use a conceptual framework to determine potentially modifiable factors affecting patient portal utilization by older adults (aged 55 years and older) who receive care at clinics that serve low income and ethnically diverse communities. The secondary objective was to delineate how patient portal utilization is associated with perceived usefulness and usability. METHODS: Patients from one urban and two rural clinics serving low income patients were recruited and completed interviewer-administered questionnaires on patient portal utilization. RESULTS: A total of 200 ethnically diverse patients completed questionnaires, of which 41 (20.5%) patients reported utilizing portals. Education, social support, and frequent Internet utilization improve the odds of patient portal utilization; receiving health care at a rural clinic decreases the odds of portal utilization. CONCLUSIONS: Leverage points to address disparities in patient portal utilization include providing training for older adults in patient portal utilization, involving spouses or other care partners in this training, and making information technology access available at public places in rural and urban communities.

Primary Care Providers' Views of Patient Portals: Interview Study of Perceived Benefits and Consequences.

BACKGROUND: The United States government is encouraging physicians to adopt patient portals-secure websites that allow patients to access their health information. For patient portals to recognize their full potential and improve patient care, health care providers' acceptance and encouragement of their use will be essential. However, little is known about provider concerns or views of patient portals. OBJECTIVE: We conducted this qualitative study to determine how administrators, clinic staff, and health care providers at practices serving a lower income adult population viewed patient portals in terms of their potential benefit, areas of concern, and hopes for the future. METHODS: We performed in-depth interviews between October 2013 and June 2014 with 20 clinic personnel recruited from health centers in four North Carolina counties. Trained study personnel conducted individual interviews following an interviewer guide to elicit perceptions of the benefits and disadvantages of patient portals. Interviews were recorded and transcribed. Research team members reviewed transcribed interviews for major themes to construct a coding dictionary. Two researchers then coded each transcript with any coding discrepancies resolved through discussion. RESULTS: The interviews revealed that clinic personnel viewed patient portals as a mandated product that had potential to improve communication and enhance information sharing. However, they expressed many concerns including portals' potential to generate more work, confuse patients, alienate non-users, and increase health disparities. Clinic personnel expected few older and disadvantaged patients to use a portal. CONCLUSIONS: Given that clinic personnel have significant concerns about portals' unintended consequences, their uptake and impact on care may be limited. Future studies should examine ways portals can be implemented in practices to address providers' concerns and meet the needs of vulnerable populations.

Design Considerations for Patient Portal Adoption by Low-Income, Older Adults.

This paper describes the results of an interview study investigating facilitators and barriers to adoption of patient portals among low-income, older adults in rural and urban populations in the southeastern United States. We describe attitudes of this population of older adults and their current level of technology use and patient portal use. From qualitative analysis of 36 patient interviews and 16 caregiver interviews within these communities, we derive themes related to benefits of portals, barriers to use, concerns and desired features. Based on our initial findings, we present a set of considerations for designing the patient portal user experience, aimed at helping healthcare clinics to meet U.S. federally-mandated 'meaningful use' requirements.