Correction: Access to Electronic Personal Health Records Among Patients With Multiple Chronic Conditions: A Secondary Data Analysis.

[This corrects the article DOI: .].

Correction: Tracking Healthy People 2020 Internet, Broadband, and Mobile Device Access Goals: An Update Using Data From the Health Information National Trends Survey.

[This corrects the article DOI: 10.2196/13300.].

Designing a Framework for Remote Cancer Care Through Community Co-design: Participatory Development Study.

BACKGROUND: Recent shifts to telemedicine and remote patient monitoring demonstrate the potential for new technology to transform health systems; yet, methods to design for inclusion and resilience are lacking. OBJECTIVE: The aim of this study is to design and implement a participatory framework to produce effective health care solutions through co-design with diverse stakeholders. METHODS: We developed a design framework to cocreate solutions to locally prioritized health and communication problems focused on cancer care. The framework is premised on the framing and discovery of problems through community engagement and lead-user innovation with the hypothesis that diversity and inclusion in the co-design process generate more innovative and resilient solutions. Discovery, design, and development were implemented through structured phases with design studios at various locations in urban and rural Kentucky, including Appalachia, each building from prior work. In the final design studio, working prototypes were developed and tested. Outputs were assessed using the System Usability Scale as well as semistructured user feedback. RESULTS: We co-designed, developed, and tested a mobile app (myPath) and service model for distress surveillance and cancer care coordination following the LAUNCH (Linking and Amplifying User-Centered Networks through Connected Health) framework. The problem of awareness, navigation, and communication through cancer care was selected by the community after framing areas for opportunity based on significant geographic disparities in cancer and health burden resource and broadband access. The codeveloped digital myPath app showed the highest perceived combined usability (mean 81.9, SD 15.2) compared with the current gold standard of distress management for patients with cancer, the paper-based National Comprehensive Cancer Network Distress Thermometer (mean 74.2, SD 15.8). Testing of the System Usability Scale subscales showed that the myPath app had significantly better usability than the paper Distress Thermometer (t63=2.611; P=.01), whereas learnability did not differ between the instruments (t63=-0.311; P=.76). Notable differences by patient and provider scoring and feedback were found. CONCLUSIONS: Participatory problem definition and community-based co-design, design-with methods, may produce more acceptable and effective solutions than traditional design-for approaches.

Emerging digital technologies in cancer treatment, prevention, and control.

The very first issue of the journal of Translational Behavioral Medicine (TBM) was dedicated, in part, to the theme of Health Information Technology as a platform for evidence implementation. The topic was timely: legislation in the USA was passed with the intent of stimulating the adoption of electronic health records; mobile smartphones, tablets, and other devices were gaining traction in the consumer market, while members within the Society of Behavioral Medicine were gaining scientific understanding on how to use these tools to effect healthy behavior change. For the anniversary issue of TBM, we evaluated the progress and problems associated with deploying digital health technologies to support cancer treatment, prevention, and control over the last decade. We conducted a narrative review of published literature to identify the role that emerging digital technologies may take in achieving national and international objectives in the decade to come. We tracked our evaluation of the literature across three phases in the cancer control continuum: (a) prevention, (b) early detection/screening, and (c) treatment/survivorship. From our targeted review and analyses, we noted that significant progress had been made in the adoption of digital health technologies in the cancer space over the past decade but that significant work remains to be done to integrate these technologies effectively into the cancer control systems needed to improve outcomes equitably across populations. The challenge for the next 10 years is inherently translational.

Digital Health Engagement in the US Population: Insights From the 2018 Health Information National Trends Survey.

Objectives. To examine prevalence and predictors of digital health engagement among the US population. Methods. We analyzed nationally representative cross-sectional data on 7 digital health engagement behaviors, as well as demographic and socioeconomic predictors, from the Health Information National Trends Survey (HINTS 5, cycle 2, collected in 2018; n = 2698-3504). We fitted multivariable logistic regression models using weighted survey responses to generate population estimates. Results. Digitally seeking health information (70.14%) was relatively common, whereas using health apps (39.53%) and using a digital device to track health metrics (35.37%) or health goal progress (38.99%) were less common. Digitally communicating with one's health care providers (35.58%) was moderate, whereas sharing health data with providers (17.20%) and sharing health information on social media (14.02%) were uncommon. Being female, younger than 65 years, a college graduate, and a smart device owner positively predicted several digital health engagement behaviors (odds ratio range = 0.09-4.21; P value range < .001-.03). Conclusions. Many public health goals depend on a digitally engaged populace. These data highlight potential barriers to 7 key digital engagement behaviors that could be targeted for intervention.

Feasibility of collecting patient-generated health data to enhance cancer registry surveillance.

PURPOSE: Patient-generated health data (PGHD) can provide information about population-level patterns in health outcomes that patients experience during cancer survivorship. Cancer registries do not collect PGHD as part of routine operations. This study assessed the feasibility of online collection of PGHD to augment cancer registry data. METHODS: Cancer survivors who (1) were aged 50 or older, (2) had been diagnosed with breast, prostate, or colorectal cancer, and (3) received their diagnosis within 10 years of the study start date were recruited at four Surveillance, Epidemiology, and End Results (SEER) cancer registry program sites. Each site was required to collect PGHD at baseline and a future time point to assess the feasibility of longitudinal methods. All sites collected data through a survey or questionnaire(s); each site employed unique methods to administer their surveys. RESULTS: Across the sites, initial recruitment appeared to be the most challenging aspect in establishing a longitudinal cohort from the SEER sampling frame, with participation rates ranging from 3 to 17%. However, once enrolled, the percentage of survivors completing surveys at multiple time points was relatively high, ranging from 48 to 91%. CONCLUSION: Augmenting cancer registry data with longitudinally collected PGHD is feasible, although more work is needed to overcome barriers of initial patient recruitment and adoption of online PGHD collection techniques for public health surveillance. IMPLICATIONS FOR CANCER SURVIVORS: Registry data, including PGHD, can provide the medical community with patient perspectives on treatment effects and quality of life and can offer cancer survivors information about symptom management and advances in research.

Perceptions of cancer as a death sentence: Tracking trends in public perceptions from 2008 to 2017.

OBJECTIVE: There has been steady progress in reducing cancer mortality in the United States; however, this progress hasn't been evenly distributed across regions. This paper assesses trends in cancer mortality salience (CMS), that is, agreeing that getting cancer is a death sentence, over time in the United States and examines correlates of CMS. METHODS: Data from three administrations of the Health Information National Trends Survey (HINTS), gathered in 2008, 2013, and 2017, were merged, resulting in a total sample of 10,063 respondents. Trends in changes in CMS over time were examined as well as maps of the distribution of CMS in the United States. A logistic regression model was conducted, regressing CMS on a set of sociodemographic, psychological, health-related, and environmental predictors. RESULTS: The aggregated percentage of US adults who agreed with the CMS statement changed over time and was modified by age. Geographic distribution of agreement with CMS was inconsistent across the United States. In the adjusted logistic model, perceived health (worse health), cancer prevention, fatalism, and confusion, and cancer status (no cancer) were all significantly associated with CMS. There was also a significant interaction between survey year and age. CONCLUSION: Despite recent information that cancer mortality rates are decreasing, most US adults still see cancer as a death sentence and this is especially an issue in certain subgroups. These findings have ramifications for groups of people who may be at risk for developing cancer given their attitudes and beliefs that there isn't much they can do to prevent or control it.

The difference in knowledge and attitudes of using mobile health applications between actual user and non-user among adults aged 50 and older.

BACKGROUND: Despite the great benefits of mobile health applications (mHAs) in managing non-communicable diseases (NCDs) internationally, studies have documented general challenges to broad adoption of mHAs among older age groups. By focusing on broad adoption, these studies have been limited in their evaluation of adults aged 50 and older who have high risk of NCDs and can benefit the most from the functionalities provided by mHAs. OBJECTIVE: This study aims to evaluate the knowledge, self-confidence, perceived benefits, and barriers of using mHAs depending on experience with mHAs among adults aged 50 and older. Furthermore, we aim to identify the factors associated with the actual use of mHAs. METHODS: We conducted a cross-sectional survey at a single tertiary hospital in Seoul, Korea, between May 1 and May 31, 2018. Of the 625 participants who were contacted, 323 participants were granted full inclusion to the study. We compared demographics, knowledge, self-confidence, and perceived benefits and barriers by experience with using mHAs, then performed logistic regression to identify the factors associated with mHA use. RESULTS: Among the participants, 64.1% (N = 207) had experience using mHAs. Those in the experienced group were more likely to have more than college education (55.1% vs. 27.5%, P < 0.001) and to report a higher monthly income (≥ $7,000, 22.7% vs. 18.1%, P = 0.05) than their less-experienced counterparts. Although the experienced group was more likely to have higher self-confidence in using mHAs, about half of the study participants, including people with experience using mHAs, did not have appropriate knowledge of mobile technology. With adjusted logistic model, higher educated (adjusted PR (aPR) = 1.53, 95% CI, 1.26-1.80), higher perceived benefits of mHAs (aPR = 1.43, 95% CI, 1.04-1.83), and higher self-confidence using mHAs (aPR = 1.41, 95% CI, 1.12-1.70) were significant factors associated with mHA use. CONCLUSIONS: The use of mHAs among adults aged 50 and older is becoming more common globally; nevertheless, there are still people unable to use mHAs properly because of lack of experience and knowledge. Strategies are needed to encourage the reliable usage of mHAs among those who may need it the most by improving self-confidence and better articulating benefits.

Patient Reports of Involvement in Health Care Decisions: Falling Short of Healthy People 2020 Objectives.

The Healthy People 2020 (HP 2020) initiative delineates objectives for improving population health in the United States. The National Cancer Institute's Health Information National Trends Survey (HINTS) has served as an important data source for tracking several HP 2020 Health Communication and Health Information Technology objectives, including patient perceptions of involvement in health-care decisions. We analyzed data from six cross-sectional administrations of HINTS (2008 to 2017; N = 25,410) to assess progress toward the HP 2020 objective of increasing the proportion of persons reporting that their health-care providers always involved them in decisions about their health care. In each survey year, just over half the population (range = 51.6 to 54.6) reported that their health-care providers always involved them in health-care decisions; the observed percentages over a 10-year period remained below the HP 2020 goal of 56.8% and did not show significant improvement. Results show a lack of progress toward this HP 2020 goal despite increased attention to patient engagement in health care over the last several decades.

Mending Disconnects in Cancer Care: Setting an Agenda for Research, Practice, and Policy.

Cancer in the United States accounts for $600 billion in health care costs, lost work time and productivity, reduced quality of life, and premature mortality. The future of oncology delivery must mend disconnects to equitably improve patient outcomes while constraining costs and burden on patients, caregivers, and care teams. Embedding learning health systems into oncology can connect care, engaging patients and providers in fully interoperable data systems that remotely monitor patients; generate predictive and prescriptive analytics to facilitate appropriate, timely referrals; and extend the reach of clinicians beyond clinic walls. Incorporating functional learning systems into the future of oncology and follow-up care requires coordinated national attention to 4 synergistic strategies: (1) galvanize and shape public discourse to develop and adopt these systems, (2) demonstrate their value, (3) test and evaluate their use, and (4) reform policy to incentivize and regulate their use.

Riding the Wave of Digital Transformation in Behavioral Medicine.

BACKGROUND: Digital technologies provide a platform for accelerating science and broadening impact in behavioral medicine. PURPOSE: The objective of this invited keynote presentation or paper is to offer a blueprint for navigating the rapidly changing waters of digital health. METHODS: A strategic literature review on digital health technologies in behavioral medicine was combined with a review of relevant policy initiatives to yield insights on: (a) knowledge building, (b) collaboration, and (c) public health stewardship. RESULTS: Digital platforms offer unprecedented leverage for accelerating science, facilitating collaboration, and advancing public health. Early successes in behavioral medicine demonstrated how digital platforms could extend the reach of theory-based behavioral therapeutics through increases in efficiency and scale. As medical investments in health information technology increased, the field of behavioral informatics emerged as the collaborative glue binding behavioral theory into a new generation of patient-facing applications, clinical decision support tools, evidence-based communication programs, and population health management strategies. As a leader within the interstitial space between medicine, psychology, and engineering, the Society of Behavioral Medicine is in a distinct position to exert influence on the ways in which our science is utilized to eliminate health disparities; improve support for patients, caregivers, and communities; to promote general health and well-being; and to offer relief when confronted with psychological pain or addiction. CONCLUSION: Riding the wave of digital transformation has less to do with mastering the complexities of the latest technologies and more to do with adhering closely to established principles for navigating a rapidly changing information environment.

Barn-Raising on the Digital Frontier: The L.A.U.N.C.H. Collaborative.

A meta-analysis of oncology papers from around the world revealed that cancer patients who lived more than 50 miles away from hospital centers routinely presented with more advanced stages of disease at diagnosis, exhibited lower adherence to prescribed treatments, presented with poorer diagnoses, and reported a lower quality of life than patients who lived nearer to care facilities. Connected health approaches-or the use of broadband and telecommunications technologies to evaluate, diagnose, and monitor patients beyond the clinic-are becoming an indispensable tool in medicine to overcome the obstacle of distance.

The Landscape of Connected Cancer Symptom Management in Rural America: A Narrative Review of Opportunities for Launching Connected Health Interventions.

Background: The 2016 President's Cancer Panel called for projects focusing on improving cancer symptom management using connected health technologies (broadband and telecommunications). However, rural communities, like those in Appalachia, may experience a "double burden" of high cancer rates and lower rates of broadband access and adoption necessary for connected health solutions. Purpose: To better understand the current landscape of connected health in the management of cancer symptoms in rural America. Methods: A literature search was conducted using four academic databases (PubMed, CINAHL, MEDLINE, and PsycINFO) to locate articles published from 2010 to 2019 relevant to connected cancer symptom management in rural America. Text screening was conducted to identify relevant publications. Results: Among 17 reviewed studies, four were conducted using a randomized controlled trial; the remainder were formative in design or small pilot projects. Five studies engaged stakeholders from rural communities in designing solutions. Most commonly studied symptoms were psychological/emotional symptoms, followed by physical symptoms, particularly pain. Technologies used were primarily telephone-based; few were Internet-enabled video conferencing or web-based. Advanced mobile and Internet-based approaches were generally in the development phase. Overall, both rural patients and healthcare providers reported high acceptance, usage, and satisfaction of connected health technologies. Ten of the 17 studies reported improved symptom management outcomes. Methodological challenges that limited the interpretation of the findings were summarized. Implications: The review identified a need to engage rural stakeholders to develop and test connected cancer symptom management solutions that are based on advanced mobile and broadband Internet technologies.

Experiencing Cancer in Appalachian Kentucky.

Quilted Appalachian Sunset©2011 Jim Harrisjim-harris.pixels.com Nothing tells the story of people working together better than a community quilt. A diversity of talents, colors, and materials brought together through skill and shared purpose. Perhaps never before have we as Americans needed a stronger reminder that many hands make short work of big problems. The work presented here by the L.A.U.N.C.H. Collaborative offers a new framework for health care that could be compared to a digital quilt, powered by community-based participatory design, with lived expertise and the newest advances in broadband-enabled connected health solutions. This work demonstrates the value and need to engage local communities and what can be learned when beneficiaries and traditional caregivers work together to develop healthcare solutions.

Video-Based Interventions for Cancer Control: A Systematic Review.

Background. The use of videos for patient and public health education has been widely adopted and well documented in the literature. Aims. To conduct a systematic review of empirical studies that used video-based interventions for cancer prevention and control to document study designs, settings, approaches, targeted cancer sites and behaviors, and outcomes and to identify gaps in research and practice. Method. PubMed, PsychINFO, CINAHL, SCOPUS, and Web of Science were searched for studies published in the 30-year period from 1984 to 2014. Of 1,521 articles identified, duplicates were removed, and titles and abstracts of 779 were examined for eligibility. In all, 315 articles met the inclusion criteria and were coded by three independent coders. Interrater reliability was assessed. Descriptive frequencies and proportions were calculated. Results. Studies evaluating video interventions for cancer prevention and control have increased over time. The majority used randomized controlled trial designs (54%), followed by single-group pre-posttest designs (18%). Most were delivered in health care settings (39%). Detection (30%) and treatment (16%) were the cancer control continuum stages most frequently addressed, with breast cancer (29%) being the most frequently targeted cancer site. The behavior most commonly targeted was screening/early detection (39%). Topics such as caregiving, coping, palliative care, and end of life were rarely addressed. The majority (69%) reported being successful at achieving their stated objectives, though outcomes varied across studies. Conclusions. Video interventions have been widely utilized for cancer prevention and control, with demonstrated successes. Future research should test innovative designs and new delivery platforms and should include underrepresented topics and cancer sites.

Role of the Internet in Solving the Last Mile Problem in Medicine.

Internet-augmented medicine has a strong role to play in ensuring that all populations benefit equally from discoveries in the medical sciences. Yet, data from the Centers for Disease Control and Prevention collected from 1999 to 2014 suggested that during the first phase of internet diffusion, progress against mortality has stalled, and in some cases, receded in rural areas that are traditionally underserved by medical and broadband resources. This problem of failing to extend the benefits of extant medical knowledge equitably to all populations regardless of geography can be framed as the "last mile problem in health care." In theory, the internet should help solve the last mile problem by making the best knowledge in the world available to everyone worldwide at a low cost and no delay. In practice, the antiquated supply chains of industrial age medicine have been slow to yield to the accelerative forces of evolving internet capacity. This failure is exacerbated by the expanding digital divide, preventing residents of isolated, geographically distant communities from taking full advantage of the digital health revolution. The result, according to the Federal Communications Commission's (FCC's) Connect2Health Task Force, is the unanticipated emergence of "double burden counties," ie, counties for which the mortality burden is high while broadband access is low. The good news is that a convergence of trends in internet-enabled health care is putting medicine within striking distance of solving the last mile problem both in the United States and globally. Specific trends to monitor over the next 25 years include (1) using community-driven approaches to bridge the digital divide, (2) addressing structural disconnects in care through P4 Medicine, (3) meeting patients at "point-of-need," (4) ensuring that no one is left behind through population management, and (5) self-correcting cybernetically through the learning health care system.

Online Health Information Seeking Among US Adults: Measuring Progress Toward a Healthy People 2020 Objective.

OBJECTIVE: During the past decade, the availability of health information online has increased dramatically. We assessed progress toward the Healthy People 2020 (HP2020) health communication and health information technology objective of increasing the proportion of health information seekers who easily access health information online. METHODS: We used data from 4 administrations of the Health Information National Trends Survey (HINTS 2008-2017) (N = 18 103). We conducted multivariable logistic regression analysis to evaluate trends over time in experiences with accessing health information and to examine differences by sociodemographic variables (sex, age, race/ethnicity, education, income, metropolitan status) separately for those who used the internet (vs other information sources) during their most recent search for health information. RESULTS: Among US adults who looked for health information and used the internet for their most recent search, the percentage who reported accessing health information without frustration was stable during the study period (from 37.2% in 2008 to 38.5% in 2017). Accessing information online without frustration was significantly and independently associated with age 35-49 (vs age 18-34) (odds ratio [OR] = 1.34; 95% confidence interval [CI], 1.03 -1.73), non-Hispanic black (vs non-Hispanic white) race/ethnicity (OR = 2.15; 95% CI, 1.55-2.97), and annual household income <$20 000 (vs >$75 000) (OR = 0.66; 95% CI, 0.47-0.93). The percentage of adults who used an information source other than the internet and reported accessing health information online without frustration ranged from 31.3% in 2008 to 42.7% in 2017. Survey year 2017 (vs 2008) (OR = 1.61; 95% CI, 1.09-2.35) and high school graduate education (vs college graduate) (OR = 0.69; 95% CI, 0.49-0.97) were significantly and independently associated with accessing health information without frustration from sources other than the internet. CONCLUSIONS: The percentage of online health information seekers reporting easily accessing health information did not meet the HP2020 objective. Continued efforts are needed to enable easy access to online health information among diverse populations.

Tracking Healthy People 2020 Internet, Broadband, and Mobile Device Access Goals: An Update Using Data From the Health Information National Trends Survey.

BACKGROUND: As the year 2020 approaches, there is a need to evaluate progress toward the United States government's Healthy People 2020 (HP2020) health information technology and communication objectives to establish baselines upon which Healthy People 2030 objectives can be based. OBJECTIVE: The aim of this study was to use the National Cancer Institute's (NCI) Health Information National Trends Survey (HINTS) to benchmark progress toward HP2020 goals related to increasing internet access using broadband, and to assess the state of the digital divide for various sociodemographic groups. METHODS: We merged and analyzed data from 8 administrations of HINTS (2003-2017). Descriptive statistics were generated, and predicted marginals were calculated using interaction terms between survey year and selected sociodemographic variables of interest, including age, sex, race and ethnicity, income, education, and geography (rural versus urban), to test for differential change over time. RESULTS: The number of users having access to the internet increased between 2003 and 2014 (63.15% [3982/6358] to 83.41% [2802/3629]); it remained relatively steady from 2014 to 2017 (81.15% [2533/3283]). Broadband access increased between 2003 and 2011 (from 32.83% [1031/3352] to 77.87% [3375/4405]), but has been declining since (55.93% [1364/2487] in 2017). Access via cellular network increased between 2008 and 2017 (from 6.86% [240/4405] to 65.43% [1436/2489]). Statistically significant disparities in overall internet access were noted in the predicted marginals for age, sex, race and ethnicity, income, and education; for age, sex, income, and geography for broadband access; and for age and sex for cellular network. CONCLUSIONS: The targets set forth in HP2020 were met for overall internet access and for internet access via cellular network; however, the target was not met for internet access via broadband. Furthermore, although the digital divide persisted by sociodemographic characteristics, the magnitude of many disparities in access decreased over time.