An Online Survey of Technology Use Among Patients With Cancer Years or Older

BACKGROUND: Historically, people aged 65 years or older have been slower to adopt new technol-ogy. However, technology use in this demographic continues to increase. OBJECTIVES: This study aimed to understand how patients with cancer who are aged 65 years or older engage with technology and whether patient behavior related to technology use has changed because of the COVID-19 pandemic. In addition, this study evaluated whether respondents' understand-ing of technology was associated with increased likelihood of adoption and perceived utility of the ONS On-CallTM cancer treatment symptom assessment tool. METHODS: A U.S. population-based anonymous online survey was conducted between May 17 and May 31, 2021, with 103 patients with cancer aged at least 65 years. FINDINGS:The majority of respondents used tech-nology regularly as part of their daily lives. Activities included shopping online, reading the news, or engaging with a healthcare platform. As a result of the COVID-19 pandemic, most respondents reported an increased use of digital activities, particularly the use of healthcare technology. Respondents reported they would be likely to use ONS On-Call, particularly if it is recommended by a healthcare provider.

Access to Telehealth (AcT): Presenter(s): Francesca Gany, Memorial Sloan Kettering Cancer Center, United States

Although telehealth services grew exponentially in the U.S. during COVID-19, access has been inequitable, with underrepresented, including limited English proficient, patients less likely to use telehealth than non-Hispanic White, English-speaking patients. This could exacerbate existing outcomes disparities among underserved patients. We administered a cross-sectional survey on telehealth access beliefs and barriers among predominantly immigrant, racially and ethnically underrepresented community members and breast cancer patients(N=312) in the New York metropolitan area from August 2020 through February 2021. We then developed a program to facilitate telehealth access among underserved breast cancer patients. 56% thought video visits were inferior to in-person, 47% did not know if insurance covered telehealth, 42% lacked home internet for video telehealth, and 14% did not understand how telehealth works. In February 2021, we initiated, in partnership with over 20 health and community organizations, Access to Telehealth for Underserved Breast Cancer Patients (AcT), a multipronged, multilingual telehealth navigation program. Since January 2022, 154 patients have been screened for telehealth needs;111 needed and were provided with navigation;and 78 needed and were provided with mostly donated refurbished devices (25 smartphones, 28 laptops, 25 tablets) to enable telehealth visits. Over 250 healthcare professionals and 80 community organizations have received AcT information/education sessions. Because 68% of AcT patients need patient portal navigation, this has become a key AcT focus. AcT has demonstrated the importance of a culturally and linguistically tailored telehealth access program, built on strong partnerships, to facilitate telehealth access. At the health systems level, AcT has also helped to identify and disseminate potential evidence-based policy solutions, such as the provision of patient portal services in multiple languages and the ensuring of telehealth readiness among vulnerable patients. Information technology partnerships can make refurbished devices available to patients who do not have telehealth-ready devices of their own. [ABSTRACT FROM AUTHOR] Copyright of Patient Education & Counseling is the property of Elsevier B.V. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Impact of COVID-19 lockdown on patient-provider electronic communications.

BACKGROUND: SARS CoV-2 virus (COVID-19) impacted the practice of healthcare in the United States, with technology being used to facilitate access to care and reduce iatrogenic spread. Since then, patient message volume to primary care providers has increased. However, the volume and trend of electronic communications after lockdown remain poorly described in the literature. METHODS: All incoming inbox items (telephone calls, refill requests, and electronic messages) sent to providers from patients amongst four primary care clinics were collected. Inbox item rates were calculated as a ratio of items per patient encountered each week. Trends in inbox rates were assessed during 12 months before and after lockdown (March 1st, 2020). Logistic regression was utilized to examine the effects of the lockdown on inbox item rate post-COVID-19 lockdown as compared to the pre-lockdown period. RESULTS: Before COVID-19 lockdown, 2.07 new inbox items per encounter were received, which increased to 2.83 items after lockdown. However, only patient-initiated electronic messages increased after lockdown and stabilized at a rate higher than the pre-COVID-19 period (aRR 1.27, p-value < 0.001). In contrast, prescription refill requests and telephone calls quickly spiked, then returned to pre-lockdown levels. CONCLUSION: Based on our observations, providers experienced a quick increase in all inbox items. However, only electronic messages had a sustained increase, exacerbating the workload of administrators, staff, and clinical providers. This study directly correlates healthcare technology adoption to a significant disruptive event but also shows additional challenges to the healthcare system that must be considered with these changes.

Disparities in patient portal access by US adults before and during the COVID-19 pandemic.

Objective: Online patient portals become important during disruptions to in-person health care, like when cases of coronavirus disease 2019 (COVID-19) and other respiratory viruses rise, yet underlying structural inequalities associated with race, socio-economic status, and other socio-demographic characteristics may affect their use. We analyzed a population-based survey to identify disparities within the United States in access to online portals during the early period of COVID-19 in 2020. Materials and Methods: The National Cancer Institute fielded the 2020 Health and Information National Trends Survey from February to June 2020. We conducted multivariable analysis to identify socio-demographic characteristics of US patients who were offered and accessed online portals, and reasons for nonuse. Results: Less than half of insured adult patients reported accessing an online portal in the prior 12 months, and this was less common among patients who are male, are Hispanic, have less than a college degree, have Medicaid insurance, have no regular provider, or have no internet. Reasons for nonuse include: wanting to speak directly to a provider, not having an online record, concerns about privacy, and discomfort with technology. Discussion: Despite the rapid expansion of digital health technologies due to COVID-19, we found persistent socio-demographic disparities in access to patient portals. Ensuring that digital health tools are secure, private, and trustworthy would address some patient concerns that are barriers to portal access. Conclusion: Expanding the use of online portals requires explicitly addressing fundamental inequities to prevent exacerbating existing disparities, particularly during surges in cases of COVID-19 and other respiratory viruses that tax health care resources.

Patient Portal Adoption, Use, and Satisfaction among U.S. Adults in Late-stage COVID-19 Pandemic

Patient portals have been around for decades, but only became widely available to patients in the last 10 years as cultural shifts (i.e., patient-centered care) and policies (e.g., HITECH Act) encouraged healthcare organizations to offer patients electronic access to their medical records, as well as digital health services such as secure messaging with their healthcare team. Unfortunately, despite high interest among patients, research has documented generally slow uptake and low levels of use. However, the COVID-19 pandemic has brought new incentives to adopt and use portals (e.g., to access video visits, COVID-19 test results). While evidence from some healthcare organizations suggests that this has translated to higher patient engagement with portals, there have not been national-level studies to investigate this. Our cross-sectional survey addresses that gap by assessing a sample of U.S. adults' use, perceptions of, and satisfaction with patient portals at the end of 2021. We found high levels of portal awareness, adoption, and use, as well as satisfaction among survey participants that, in many cases, exceeds what has been found in past surveys of U.S. adults. In addition, while we did find some evidence of some disparities in portal adoption and use (e.g., lower adoption among those with lower levels of education completed), many of the factors that have been found in previous literature such as race were not associated with portal engagement in this study. Our results provide early evidence that there may finally be some progress in portal adoption and use, but more research is needed to understand what is driving this and whether and how this progress can be maintained post-pandemic. Addressing common patient concerns and suggestions may be one path forward. © 2022 IEEE.

Midwest rural-urban disparities in use of patient online services for COVID-19.

PURPOSE: Rural populations are disproportionately affected by the COVID-19 pandemic. We characterized urban-rural disparities in patient portal messaging utilization for COVID-19, and, of those who used the portal during its early stage in the Midwest. METHODS: We collected over 1 million portal messages generated by midwestern Mayo Clinic patients from February to August 2020. We analyzed patient-generated messages (PGMs) on COVID-19 by urban-rural locality and incorporated patients' sociodemographic factors into the analysis. FINDINGS: The urban-rural ratio of portal users, message senders, and COVID-19 message senders was 1.18, 1.31, and 1.79, indicating greater use among urban patients. The urban-rural ratio (1.69) of PGMs on COVID-19 was higher than that (1.43) of general PGMs. The urban-rural ratios of messaging were 1.72-1.85 for COVID-19-related care and 1.43-1.66 for other health care issues on COVID-19. Compared with urban patients, rural patients sent fewer messages for COVID-19 diagnosis and treatment but more messages for other reasons related to COVID-19-related health care (eg, isolation and anxiety). The frequent senders of COVID-19-related messages among rural patients were 40+ years old, women, married, and White. CONCLUSIONS: In this Midwest health system, rural patients were less likely to use patient online services during a pandemic and their reasons for its use differ from urban patients. Results suggest opportunities for increasing equity in rural patient engagement in patient portals (in particular, minority populations) for COVID-19. Public health intervention strategies could target reasons why rural patients might seek health care in a pandemic, such as social isolation and anxiety.

Interventions, Participative Role, Barriers, and Facilitators for Involvement in eHealth Communication for People Undergoing Hemodialysis: Protocol for a Scoping Review.

BACKGROUND: eHealth interventions have been shown to offer people living with chronic kidney disease the opportunity of embracing dialysis therapies with greater confidence, the potential to obtain better clinical outcomes and increased quality of life, and diverse and flexible designs and delivery options. eHealth interventions or solutions can offer one-way information without the possibility for dialogue, as with most mobile apps. eHealth interventions intending to enable two-way communication between patients undergoing hemodialysis and health professionals are the focus of this review. eHealth communication interventions that enable two-way communication between patients undergoing hemodialysis and health professionals is an emerging field, but issues relating to participation in eHealth communication for patients undergoing hemodialysis are scarcely described. The current conceptualization of this issue is too scattered to inform the development of future interventions. In this scoping review, we want to assemble and examine this scattered knowledge on participation in two-way eHealth communication for patients undergoing hemodialysis. OBJECTIVE: We want to understand the participative role of people living with chronic kidney disease undergoing hemodialysis in available communicative eHealth interventions and to understand which barriers and facilitators exist for patient involvement in eHealth communication with health professionals. METHODS: A scoping review methodology is guiding this study. Peer-reviewed primary studies, including quantitative, qualitative, and mixed methods study designs will be included. A systematic search for published studies, dissertations, and theses at the doctoral level in the English language will be conducted in five databases (MEDLINE, Embase, CINAHL, Scopus, and ProQuest Dissertations and Theses). The included literature will focus on adult (18 years or older) patients undergoing hemodialysis who are involved in eHealth communication with health professionals. Data on the type of eHealth communication interventions, the participative role, and barriers and facilitators for the involvement in eHealth communication for people undergoing hemodialysis will be extracted independently by two reviewers. The extracted data will be collected in a draft charting table prepared for the study. Any discrepancies between the reviewers will be solved through discussion or with a third reviewer. RESULTS: Results are anticipated by the spring of 2023 and will be presented in tabular format along with a narrative summary. The anticipated results will be presented in alignment with the objectives of the study, presenting findings on the participative role of patients undergoing hemodialysis in eHealth communication interventions. CONCLUSIONS: We anticipate that this study will inform on eHealth communication interventions and the level of patient participation in eHealth communication for patients undergoing hemodialysis. The systematized overview will possibly identify research gaps and motivate further development of eHealth communication to ensure patient participation. The findings will be of interest to key stakeholders in clinical care, research, development, policy, and patient advocacy. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/38615.

Paving the Way for Electronic Patient-Centered Measurement in Team-Based Primary Care: Integrated Knowledge Translation Approach.

BACKGROUND: Patient-centered measurement (PCM) aims to improve the overall quality of care through the collection and sharing of patient values, outcomes, and perspectives. However, the use of PCM in care team decisions remains limited. Integrated knowledge translation (IKT) offers a collaborative, adaptive approach to explore best practices for incorporating PCM into primary care practices by involving knowledge users, including patients and providers, in the exploratory process. OBJECTIVE: This study aims to test the feasibility of using patient-generated data in team-based care; describe the use of these data for team-based mental health care; and summarize patient and provider care experiences with PCM. METHODS: We conducted a multi-method exploratory study in a rural team-based primary care clinic using IKT to co-design, implement, and evaluate the use of PCM in team-based mental health care. Care pathways, workflows, and quality improvement activities were adjusted iteratively to improve integration efforts. Patient and provider experiences were evaluated using individual interviews relating to the use of PCM and patient portals in practice. All meeting notes, interview summaries, and emails were analyzed to create a narrative evaluation. RESULTS: During co-design, a care workflow was developed to incorporate electronically collected patient-generated data from the patient portal into the electronic medical record, and customized educational tools and resources were added. During implementation, care pathways and patient workflows for PCM were developed. Patients found portal use easy, educational, and validating, but data entries were not used during care visits. Providers saw the portal as extra work, and the lack of portal and electronic medical record integration was a major barrier. The IKT approach was invaluable for addressing workflow changes and understanding the ongoing barriers to PCM use and quality improvement. CONCLUSIONS: Although the culture toward using PCM is changing, the use of PCM during care has not been successful. Patients felt validated and supported through portal use and could be empowered to bring these data to their visits. Training, modeling, and adaptable PCM methods are required before PCM can be integrated into routine care.

Online Medical Record Nonuse Among Patients: Data Analysis Study of the 2019 Health Information National Trends Survey.

BACKGROUND: Online medical records are being used to organize processes in clinical and outpatient settings and to forge doctor-patient communication techniques that build mutual understanding and trust. OBJECTIVE: We aimed to understand the reasons why patients tend to avoid using online medical records and to compare the perceptions that patients have of online medical records based on demographics and cancer diagnosis. METHODS: We used data from the Health Information National Trends Survey Cycle 3, a nationally representative survey, and assessed outcomes using descriptive statistics and chi-square tests. The patients (N=4328) included in the analysis had experienced an outpatient visit within the previous 12 months and had answered the online behavior question regarding their use of online medical records. RESULTS: Patients who were nonusers of online medical records consisted of 58.36% of the sample (2526/4328). The highest nonuser rates were for patients who were Hispanic (460/683, 67.35%), patients who were non-Hispanic Black (434/653, 66.46%), and patients who were older than 65 years (968/1520, 63.6%). Patients older than 65 years were less likely to use online medical records (odds ratio [OR] 1.51, 95% CI 1.24-1.84, P<.001). Patients who were White were more likely to use online medical records than patients who were Black (OR 1.71, 95% CI 1.43-2.05, P<.001) or Hispanic (OR 1.65, 95% CI 1.37-1.98, P<.001). Patients who were diagnosed with cancer were more likely to use online medical records compared to patients with no cancer (OR 1.31, 95% CI 1.11-1.55, 95% CI 1.11-1.55, P=.001). Among nonusers, older patients (≥65 years old) preferred speaking directly to their health care providers (OR 1.76, 95% CI 1.35-2.31, P<.001), were more concerned about privacy issues caused by online medical records (OR 1.79, 95% CI 1.22-2.66, P<.001), and felt uncomfortable using the online medical record systems (OR 10.55, 95% CI 6.06-19.89, P<.001) compared to those aged 18-34 years. Patients who were Black or Hispanic were more concerned about privacy issues (OR 1.42, 1.09-1.84, P=.007). CONCLUSIONS: Studies should consider social factors such as gender, race/ethnicity, and age when monitoring trends in eHealth use to ensure that eHealth use does not induce greater health status and health care disparities between people with different backgrounds and demographic characteristics.

Assessing Patient Needs During Natural Disasters: Mixed Methods Analysis of Portal Messages Sent During Hurricane Harvey.

BACKGROUND: Patient portals play an important role in connecting patients with their medical care team, which improves patient engagement in treatment plans, decreases unnecessary visits, and reduces costs. During natural disasters, patients' needs increase, whereas available resources, specifically access to care, become limited. OBJECTIVE: This study aims to examine patients' health needs during a natural crisis by analyzing the electronic messages sent during Hurricane Harvey to guide future disaster planning efforts. METHODS: We explored patient portal use data from a large Greater Houston area health care system focusing on the initial week of the Hurricane Harvey disaster, beginning with the date of landfall, August 25, 2017, to August 31, 2017. A mixed methods approach was used to assess patients' immediate health needs and concerns during the disruption of access to routine and emergent medical care. Quantitative analysis used logistic regression models to assess the predictive characteristics of patients using the portal during Hurricane Harvey. This study also included encounters by type (emergency, inpatient, observation, outpatient, and outpatient surgery) and time (before, during, and after Hurricane Harvey). For qualitative analysis, the content of these messages was examined using the constant comparative method to identify emerging themes found within the message texts. RESULTS: Out of a total of 557,024 patients, 4079 (0.73%) sent a message during Hurricane Harvey, whereas 31,737 (5.69%) used the portal. Age, sex, race, and ethnicity were predictive factors for using the portal and sending a message during the natural disaster. We found that prior use of the patient portal increased the likelihood of portal use during Hurricane Harvey (odds ratio 13.688, 95% CI 12.929-14.491) and of sending a portal message during the disaster (odds ratio 14.172, 95% CI 11.879-16.907). Having an encounter 4 weeks before or after Hurricane Harvey was positively associated with increased use of the portal and sending a portal message. Patients with encounters during the main Hurricane Harvey week had a higher increased likelihood of portal use across all five encounter types. Qualitative themes included: access, prescription requests, medical advice (chronic conditions, acute care, urgent needs, and Hurricane Harvey-related injuries), mental health, technical difficulties, and provider constraints. CONCLUSIONS: The patient portal can be a useful tool for communication between patients and providers to address the urgent needs and concerns of patients as a natural disaster unfolds. This was the first known study to include encounter data to understand portal use compared with care provisioning. Prior use was predictive of both portal use and message sending during Hurricane Harvey. These findings could inform the types of demands that may arise in future disaster situations and can serve as the first step in intentionally optimizing patient portal usability for emergency health care management during natural disasters.

Factors to Effective Telemedicine Visits During the COVID-19 Pandemic: Cohort Study.

BACKGROUND: With COVID-19 there was a rapid and abrupt rise in telemedicine implementation often without sufficient time for providers or patients to adapt. As telemedicine visits are likely to continue to play an important role in health care, it is crucial to strive for a better understanding of how to ensure completed telemedicine visits in our health system. Awareness of these barriers to effective telemedicine visits is necessary for a proactive approach to addressing issues. OBJECTIVE: The objective of this study was to identify variables that may affect telemedicine visit completion in order to determine actions that can be enacted across the entire health system to benefit all patients. METHODS: Data were collected from scheduled telemedicine visits (n=362,764) at the University of Miami Health System (UHealth) between March 1, 2020 and October 31, 2020. Descriptive statistics, mixed effects logistic regression, and random forest modeling were used to identify the most important patient-agnostic predictors of telemedicine completion. RESULTS: Using descriptive statistics, struggling telemedicine specialties, providers, and clinic locations were identified. Through mixed effects logistic regression (adjusting for clustering at the clinic site level), the most important predictors of completion included previsit phone call/SMS text message reminder status (confirmed vs not answered) (odds ratio [OR] 6.599, 95% CI 6.483-6.717), MyUHealthChart patient portal status (not activated vs activated) (OR 0.315, 95% CI 0.305-0.325), provider's specialty (primary care vs medical specialty) (OR 1.514, 95% CI 1.472-1.558), new to the UHealth system (yes vs no) (OR 1.285, 95% CI 1.201-1.374), and new to provider (yes vs no) (OR 0.875, 95% CI 0.859-0.891). Random forest modeling results mirrored those from logistic regression. CONCLUSIONS: The highest association with a completed telemedicine visit was the previsit appointment confirmation by the patient via phone call/SMS text message. An active patient portal account was the second strongest variable associated with completion, which underscored the importance of patients having set up their portal account before the telemedicine visit. Provider's specialty was the third strongest patient-agnostic characteristic associated with telemedicine completion rate. Telemedicine will likely continue to have an integral role in health care, and these results should be used as an important guide to improvement efforts. As a first step toward increasing completion rates, health care systems should focus on improvement of patient portal usage and use of previsit reminders. Optimization and intervention are necessary for those that are struggling with implementing telemedicine. We advise setting up a standardized workflow for staff.

COVID-19 and Open Notes: A New Method to Enhance Patient Safety and Trust.

From April 5, 2021, as part of the 21st Century Cures Act, all providers in the United States must offer patients access to the medical information housed in their electronic records. Via secure health portals, patients can log in to access lab and test results, lists of prescribed medications, referral appointments, and the narrative reports written by clinicians (so-called open notes). As US providers implement this practice innovation, we describe six promising ways in which patients' access to their notes might help address problems that either emerged with or were exacerbated by the COVID-19 pandemic.

Factors Affecting Portal Usage Among Chronically Ill Patients During the COVID-19 Pandemic in the Netherlands: Cross-sectional Study.

BACKGROUND: The COVID-19 pandemic has impacted the capacity of the regular health care system, which is reflected in limited access to nonurgent care for patients who are chronically ill in the Dutch health care system. Nevertheless, many of them still depend on health care assistance to manage their illnesses. Patient portals are used to provide continued health care (remotely) and offer self-management tools during COVID-19 and potentially after. However, little is known about the factors influencing portal use and users' satisfaction among patients who are chronically ill during the COVID-19 pandemic. OBJECTIVE: This study aims to examine predictors of patient portal use among patients who are chronically ill, the willingness to recommend the portal to others, and the likelihood of future use among portal nonusers. METHODS: An online self-administered questionnaire was distributed among patients who are chronically ill via social media in May 2020. The questionnaire consisted of four parts: (1) demographics including age and hours of daily internet use; (2) physical health status including COVID-19 infection, perceived level of control, and hospital visits; (3) mental health status including depression and life satisfaction; and (4) portal use including response waiting time and awareness. Descriptive, correlation, univariate, and multivariate analyses were conducted to identify factors that affect portal use, users' willingness to recommend, and nonusers' likelihood of future portal use. RESULTS: A total of 652 patients responded, and 461 valid questionnaires were included. Among the 461 patients, 67% (n=307) were identified as patient portal users. Of the nonusers, 55% (85/154) reported not being aware of the existence of a patient portal at their hospital. Significant predictors of portal use include level of control (P=.04), hospital visit time (P=.03), depression scale (P=.03), and status of life satisfaction (P=.02). Among portal users, waiting time to get a response via the portal (P<.001) and maximum acceptable waiting time (P<.001) were the strongest predictors for willingness to recommend the portal; among nonusers, the model predicted that those who were not aware of patient portals (P<.001) and were willing to wait moderately long (P<.001) were most likely to use the portal in the future. CONCLUSIONS: This study provides insights into factors that influence portal use and willingness to recommend, based on which health care providers can improve the adoption of patient portals and their services. It suggests that health care providers should leverage efficient operations management to improve responsiveness and reduce waiting time to enhance user satisfaction and willingness to recommend use. Health care organizations need to increase portal awareness among nonusers and train their patients to increase both use and longer adoption of patient portals. Factors including depression and life satisfaction can influence portal use; therefore, future studies on determinants of portal use and nonuse in this specific population are needed.

Rapid development of telehealth capabilities within pediatric patient portal infrastructure for COVID-19 care: barriers, solutions, results.

The COVID-19 national emergency has led to surging care demand and the need for unprecedented telehealth expansion. Rapid telehealth expansion can be especially complex for pediatric patients. From the experience of a large academic medical center, this report describes a pathway for efficiently increasing capacity of remote pediatric enrollment for telehealth while fulfilling privacy, security, and convenience concerns. The design and implementation of the process took 2 days. Five process requirements were identified: efficient enrollment, remote ability to establish parentage, minimal additional work for application processing, compliance with guidelines for adolescent autonomy, and compliance with institutional privacy and security policies. Weekly enrollment subsequently increased 10-fold for children (age 0-12 years) and 1.2-fold for adolescents (age 13-17 years). Weekly telehealth visits increased 200-fold for children and 90-fold for adolescents. The obstacles and solutions presented in this report can provide guidance to health systems for similar challenges during the COVID-19 response and future disasters.

"Will you hear my voice?": to engage older patients online, listen to them about their lives offline.

The scope of health information and health care services available online is rapidly expanding. At the same time, COVID-19 is causing vulnerable elders to reconsider in-person provider visits. In that context, recently published research by Y. Mizrachi et al. examining obstacles to the use of online health services (OHS) among adults age 50 and up takes on new importance. An iconic Israeli song begins, "Will you hear my voice?" (Hebrew Songs. Zemer Nugeh (Hatishmah Koli), 2020). What makes Mizrachi et al.'s findings particularly intriguing, despite several caveats, is the manner in which they demonstrated a commitment to genuinely listen to individual voices. The researchers spoke "openly and bluntly" with interviewees as peers and were rewarded with "specific, well-defined and applicable answers with the potential to be used." The most striking findings came in candid answers that went beyond the factors intrinsic to the online offerings and addressed important factors in what regular Internet users often refer to as IRL ("in real life"), such as support from family. The necessity of avoiding preconceptions about the most effective manner to engage patients underscores the importance of patient and family advisory councils (PFACs). PFACs, increasingly being adopted by health care organizations globally, provide an ongoing ability to listen and respond to the "patient voice." Effectively addressing obstacles to older adults' use of the full range of online health resources will require the involvement not just of health plans and government, but also of voluntary organizations, providers, families and others integral to users' offline "real lives." Sustained, focused listening must be a central part of that effort.