Artificial Intelligence-Based Consumer Health Informatics Application: Scoping Review.

BACKGROUND: There is no doubt that the recent surge in artificial intelligence (AI) research will change the trajectory of next-generation health care, making it more approachable and accessible to patients. Therefore, it is critical to research patient perceptions and outcomes because this trend will allow patients to be the primary consumers of health technology and decision makers for their own health. OBJECTIVE: This study aimed to review and analyze papers on AI-based consumer health informatics (CHI) for successful future patient-centered care. METHODS: We searched for all peer-reviewed papers in PubMed published in English before July 2022. Research on an AI-based CHI tool or system that reports patient outcomes or perceptions was identified for the scoping review. RESULTS: We identified 20 papers that met our inclusion criteria. The eligible studies were summarized and discussed with respect to the role of the AI-based CHI system, patient outcomes, and patient perceptions. The AI-based CHI systems identified included systems in mobile health (13/20, 65%), robotics (5/20, 25%), and telemedicine (2/20, 10%). All the systems aimed to provide patients with personalized health care. Patient outcomes and perceptions across various clinical disciplines were discussed, demonstrating the potential of an AI-based CHI system to benefit patients. CONCLUSIONS: This scoping review showed the trend in AI-based CHI systems and their impact on patient outcomes as well as patients' perceptions of these systems. Future studies should also explore how clinicians and health care professionals perceive these consumer-based systems and integrate them into the overall workflow.

An Electronic Tool to Support Patient-Centered Broad Consent: A Multi-Arm Randomized Clinical Trial in Family Medicine.

PURPOSE: Patients are frequently asked to share their personal health information. The objective of this study was to compare the effects on patient experiences of 3 electronic consent (e-consent) versions asking patients to share their health records for research. METHODS: A multi-arm randomized controlled trial was conducted from November 2017 through November 2018. Adult patients (n = 734) were recruited from 4 family medicine clinics in Florida. Using a tablet computer, participants were randomized to (1) a standard e-consent (standard), (2) an e-consent containing standard information plus hyperlinks to additional interactive details (interactive), or (3) an e-consent containing standard information, interactive hyperlinks, and factual messages about data protections and researcher training (trust-enhanced). Satisfaction (1 to 5), subjective understanding (0 to 100), and other outcomes were measured immediately, at 1 week, and at 6 months. RESULTS: A majority of participants (94%) consented to future uses of their health record information for research. No differences in study outcomes between versions were observed at immediate or 1-week follow-up. At 6-month follow-up, compared with the standard e-consent, participants who used the interactive e-consent reported greater satisfaction (B = 0.43; SE = 0.09; P <.001) and subjective understanding (B = 18.04; SE = 2.58; P <.001). At 6-month follow-up, compared with the interactive e-consent, participants who used the trust-enhanced e-consent reported greater satisfaction (B = 0.9; SE = 1.0; P <.001) and subjective understanding (B = 32.2; SE = 2.6, P <.001). CONCLUSIONS: Patients who used e-consents with interactive research details and trust-enhancing messages reported higher satisfaction and understanding at 6-month follow-up. Research institutions should consider developing and further validating e-consents that interactively deliver information beyond that required by federal regulations, including facts that may enhance patient trust in research.

Evolutionary Overview of Consumer Health Informatics: Bibliometric Study on the Web of Science from 1999 to 2019.

BACKGROUND: Consumer health informatics (CHI) originated in the 1990s. With the rapid development of computer and information technology for health decision making, an increasing number of consumers have obtained health-related information through the internet, and CHI has also attracted the attention of an increasing number of scholars. OBJECTIVE: The aim of this study was to analyze the research themes and evolution characteristics of different study periods and to discuss the dynamic evolution path and research theme rules in a time-series framework from the perspective of a strategy map and a data flow in CHI. METHODS: The Web of Science core collection database of the Institute for Scientific Information was used as the data source to retrieve relevant articles in the field of CHI. SciMAT was used to preprocess the literature data and construct the overlapping map, evolution map, strategic diagram, and cluster network characterized by keywords. Besides, a bibliometric analysis of the general characteristics, the evolutionary characteristics of the theme, and the evolutionary path of the theme was conducted. RESULTS: A total of 986 articles were obtained after the retrieval, and 931 articles met the document-type requirement. In the past 21 years, the number of articles increased every year, with a remarkable growth after 2015. The research content in 4 different study periods formed the following 38 themes: patient education, medicine, needs, and bibliographic database in the 1999-2003 study period; world wide web, patient education, eHealth, patients, medication, terminology, behavior, technology, and disease in the 2004-2008 study period; websites, information seeking, physicians, attitudes, technology, risk, food labeling, patient, strategies, patient education, and eHealth in the 2009-2014 study period; and electronic medical records, health information seeking, attitudes, health communication, breast cancer, health literacy, technology, natural language processing, user-centered design, pharmacy, academic libraries, costs, internet utilization, and online health information in the 2015-2019 study period. Besides, these themes formed 10 evolution paths in 3 research directions: patient education and intervention, consumer demand attitude and behavior, and internet information technology application. CONCLUSIONS: Averaging 93 publications every year since 2015, CHI research is in a rapid growth period. The research themes mainly focus on patient education, health information needs, health information search behavior, health behavior intervention, health literacy, health information technology, eHealth, and other aspects. Patient education and intervention research, consumer demand, attitude, and behavior research comprise the main theme evolution path, whose evolution process has been relatively stable. This evolution path will continue to become the research hotspot in this field. Research on the internet and information technology application is a secondary theme evolution path with development potential.

Using Narrative Evidence to Convey Health Information on Social Media: The Case of COVID-19.

During disease outbreaks or pandemics, policy makers must convey information to the public for informative purposes (eg, morbidity or mortality rates). They must also motivate members of the public to cooperate with the guidelines, specifically by changing their usual behavior. Policy makers have traditionally adopted a didactic and formalistic stance by conveying dry, statistics-based health information to the public. They have not yet considered the alternative of providing health information in the form of narrative evidence, using stories that address both cognitive and emotional aspects. The aim of this viewpoint paper is to introduce policy makers to the advantages of using narrative evidence to provide health information during a disease outbreak or pandemic such as COVID-19. Throughout human history, authorities have tended to employ apocalyptic narratives during disease outbreaks or pandemics. This viewpoint paper proposes an alternative coping narrative that includes the following components: segmentation; barrier reduction; role models; empathy and support; strengthening self-efficacy, community efficacy, and coping tools; preventing stigmatization of at-risk populations; and communicating uncertainty. It also discusses five conditions for using narrative evidence to produce an effective communication campaign on social media: (1) identifying narratives that reveal the needs, personal experiences, and questions of different subgroups to tailor messaging to produce targeted behavioral change; (2) providing separate and distinct treatment of each information unit or theory that arises on social networks; (3) identifying positive deviants who found creative solutions for stress during the COVID-19 crisis not found by other members of the community; (4) creating different stories of coping; and (5) maintaining a dialogue with population subgroups (eg, skeptical and hesitant groups). The paper concludes by proposing criteria for evaluating the effectiveness of a narrative.

The Unhappy Cosmetic Patient: Lessons From Unfavorable Online Reviews of Minimally and Noninvasive Cosmetic Procedures.

BACKGROUND: The number of patients receiving minimally and noninvasive cosmetic procedures is increasing. Often, patients turn to online review forums to gain and share advice regarding cosmetic procedures. Understanding and discussing patient-reported outcome data can help align physician and patient expectations and ultimately help improve the patient experience. OBJECTIVE: To determine the most common reasons patients are dissatisfied with a selection of minimally and noninvasive cosmetic procedures. MATERIALS AND METHODS: Negative patient reviews from the RealSelf.com website were analyzed, and the reason for patient discontent was recorded for the following treatments: tissue stabilized-guided subscision, cryolipolysis, electromagnetic therapy, deoxycholic acid injections, energy-induced thermolysis, radio thermoplasty, threadlifts, and ultrasound therapy. RESULTS: One thousand two hundred four reviews were included in analysis. For all treatments analyzed, the most common reason for patient dissatisfaction was ineffectiveness (n = 782, 65.0%), followed by complications (n = 301, 25.0%). The most common complications were as follows: lumps for tissue stabilized-guided subscision (n = 6, 50.0%), treated area enlargement for cryolipolysis (n = 23, 22.1%), swelling for deoxycholic acid injections (n = 9, 47.4%), numbness for energy-induced thermolysis (n = 6, 35.3%), fat loss for radio thermoplasty (n = 26, 53.1%) and ultrasound therapy (n = 32, 48.5%), and indentations for threadlifts (n = 10, 30.3%). CONCLUSION: Ineffectiveness and complications were the most common reasons for dissatisfaction among all treatments analyzed. Patient-reported outcome data may offer insight into how physicians can improve their patient's satisfaction with cosmetic procedures.

Effect of Speech Recognition on Problem Solving and Recall in Consumer Digital Health Tasks: Controlled Laboratory Experiment.

BACKGROUND: Recent advances in natural language processing and artificial intelligence have led to widespread adoption of speech recognition technologies. In consumer health applications, speech recognition is usually applied to support interactions with conversational agents for data collection, decision support, and patient monitoring. However, little is known about the use of speech recognition in consumer health applications and few studies have evaluated the efficacy of conversational agents in the hands of consumers. In other consumer-facing tools, cognitive load has been observed to be an important factor affecting the use of speech recognition technologies in tasks involving problem solving and recall. Users find it more difficult to think and speak at the same time when compared to typing, pointing, and clicking. However, the effects of speech recognition on cognitive load when performing health tasks has not yet been explored. OBJECTIVE: The aim of this study was to evaluate the use of speech recognition for documentation in consumer digital health tasks involving problem solving and recall. METHODS: Fifty university staff and students were recruited to undertake four documentation tasks with a simulated conversational agent in a computer laboratory. The tasks varied in complexity determined by the amount of problem solving and recall required (simple and complex) and the input modality (speech recognition vs keyboard and mouse). Cognitive load, task completion time, error rate, and usability were measured. RESULTS: Compared to using a keyboard and mouse, speech recognition significantly increased the cognitive load for complex tasks (Z=-4.08, P<.001) and simple tasks (Z=-2.24, P=.03). Complex tasks took significantly longer to complete (Z=-2.52, P=.01) and speech recognition was found to be overall less usable than a keyboard and mouse (Z=-3.30, P=.001). However, there was no effect on errors. CONCLUSIONS: Use of a keyboard and mouse was preferable to speech recognition for complex tasks involving problem solving and recall. Further studies using a broader variety of consumer digital health tasks of varying complexity are needed to investigate the contexts in which use of speech recognition is most appropriate. The effects of cognitive load on task performance and its significance also need to be investigated.

Usability of a Consumer Health Informatics Tool Following Completion of a Clinical Trial: Focus Group Study.

BACKGROUND: Mobile health (mHealth) apps have the potential to be effective tools for encouraging patients with chronic diseases to self-manage their health. The success of mHealth apps is related to technology acceptance and its subsequent use by intended consumers. Therefore, it is essential to gain insights from consumers' perspectives about their use of mHealth apps in daily life. OBJECTIVE: The purpose of this work was to understand consumers' perspectives on use of a self-management app following completion of a clinical trial that tested the efficacy of the app for improving health outcomes. METHODS: We conducted five focus groups with paricipants of a clinical trial (NCT03182738) who were randomized to use the video information provider (VIP) for HIV-associated nonAIDS (HANA) conditions app (VIP-HANA) or an attention control app. Thematic analysis was conducted, and the themes were organized according to the two key constructs of the technology acceptance model framework: perceived usefulness and perceived ease of use. RESULTS: Thirty-nine people living with HIV (20 from the intervention group and 19 from the control group) participated in the focus group sessions. Of the eight themes identified from focus group data, the five themes related to perceived usefulness were: (1) self-monitoring HIV-related symptoms of HANA conditions, (2) enhanced relationship with clinical providers, (3) improvement in physical and emotional health, (4) long-term impact of self-care strategies on improvement in symptoms of HANA conditions, and (5) inspired lifestyle changes to manage symptoms. The three themes related to perceived ease of use were: (1) easy to navigate, (2) avatar personalization, and (3) privacy/confidentiality maintained even when changing the location of app use. CONCLUSIONS: Perceived ease of use was similar in both study groups but perceived usefulness differed between study groups. Participants in both study groups found the VIP-HANA app to be useful in monitoring their symptoms and enhancing communication with their clinical care providers. However, only intervention group participants perceived the app to be useful in improving overall health and long-term symptom management. Findings from this study highlight factors that are essential to ensure the usefulness of self-management apps and facilitate sustained use of mHealth apps for people living with chronic illnesses.

Visualizations Integrated Into Consumer Health Technologies Support Self-management of Chronic Diseases: A Systematic Review.

While chronic diseases remain a global problem, visualizations of data and information are a potential solution to assist patients with chronic disease in communication, self-management, and decision making. The purpose of this systematic review is to synthesize evidence regarding data and information visualizations integrated into consumer health informatics solutions for chronic disease management in the community. A search was conducted in CINAHL, EMBASE, Engineering Village, PsycINFO, PubMed, and Web of Science between January 1, 2007, and May 1, 2019. Studies were evaluated using the Mixed Methods Appraisal Tool. Of the 2549 published studies, six studies met inclusion criteria. Of these six studies, two used information visualizations, two used data visualizations, and two used both information and data visualizations. Graphs were the main type of visualization used. Visualizations were mainly delivered in mobile applications and were interactive. The goals of the visualizations varied across studies including to (1) improve understanding of health data, (2) improve patient-provider communication, (3) monitor chronic disease, and/or (4) improve chronic disease management. Five studies reported subjective outcomes of the visualizations (eg, perceived usability, acceptability). One study reported both subjective and objective outcomes (eg, recall) of the visualizations. Findings highlight the need for more research on data and information visualizations integrated into consumer health technologies that support chronic disease management in daily life.

The Roles of Education, Literacy, and Numeracy in Need for Health Information during the Second Half of Adulthood: A Moderated Mediation Analysis.

We examine complex pathways that link health information seeking behavior with education and health literacy (decomposed into general literacy and numeracy), and how these pathways differ by perceived health status (need) among a nationally representative sample of Americans age 50 and older (n = 2,750). Data come from the Program for International Assessment of Adult Competencies (PIAAC). Multi-group structural equation models were used to examine the use of eight health information sources (newspapers, magazines, internet, radio, TV, books, friends/family, and health professionals). Findings partially support the long-standing notion that health seeking behaviors are directly linked to educational attainment, and provide some of the first nationally representative evidence for how education functions through distinct health literacy components to shape health information seeking behaviors by health status. Findings from this moderated mediation analysis point to the importance of examining, and addressing, health literacy disparities in access to and use of health information.

The Use of an Electronic Health Record Patient Portal to Access Diagnostic Test Results by Emergency Patients at an Academic Medical Center: Retrospective Study.

BACKGROUND: Electronic health record (EHR) patient portals provide a means by which patients can access their health information, including diagnostic test results. Little is known about portal usage by emergency department (ED) patients. OBJECTIVE: The study aimed to assess patient portal utilization by ED patients at an academic medical center using account activation rates along with the rates of access of diagnostic test results (laboratory results and radiology reports), analyzing the impact of age, gender, and self-reported patient race. METHODS: This institutional review board-approved retrospective study was performed at a 60,000-visits-per-year university-based ED. We utilized EHR data reporting tools to examine EHR portal activation and utilization for all patients who had at least one ED encounter with one or more diagnostic tests performed between October 1, 2016, and October 1, 2017. The total dataset for laboratory testing included 208,635 laboratory tests on 25,361 unique patients, of which 9482 (37.39%) had active portal accounts. The total dataset for radiologic imaging included 23,504 radiology studies on 14,455 unique patients, of which 5439 (37.63%) had an active portal account. RESULTS: Overall, 8.90% (18,573/208,635) of laboratory tests and 8.97% (2019/22,504) of radiology reports ordered in the ED were viewed in the patient portal. The highest rates of viewing of laboratory and radiology results were seen for those who were female, were aged 0 to 11 years (parent or guardian viewing by proxy) and 18 to 60 years, and self-reported their race as Caucasian or Asian. The lowest rates were for those who were teenagers, aged older than 81 years, African American/black, and Hispanic/Latino. Infectious disease, urinalysis, and pregnancy testing constituted the highest number of laboratory tests viewed. Magnetic resonance imaging reports were viewed at higher rates than computed tomography or x-ray studies (P<.001). Approximately half of all the diagnostic test results accessed by patients were reviewed within 72 hours of availability in the patient portal (laboratory results: 9904/18,573, 53.32% and radiology reports: 971/2019, 48.1%). On the other extreme, 19.9% (3701/18,573) of laboratory results and 31.6% (639/2019) of radiology reports were viewed more than 2 weeks after availability in the portal. CONCLUSIONS: The data highlight the relatively low use of a patient portal by ED patients and existing disparities between patient groups. There can be wide lag time (months) between result/report availability and access by patients. Opportunities for improvement exist for both activation and more robust utilization of patient portals by ED patients.

Herbal supplements in the print media: communicating benefits and risks.

BACKGROUND: The rise in use of food supplements based on botanical ingredients (herbal supplements) is depicted as part of a trend empowering consumers to manage their day-to-day health needs, which presupposes access to clear and accurate information to make effective choices. Evidence regarding herbal supplement efficacy is extremely variable so recent regulations eliminating unsubstantiated claims about potential effects leave producers able to provide very little information about their products. Medical practitioners are rarely educated about herbal supplements and most users learn about them via word-of-mouth, allowing dangerous misconceptions to thrive, chief among them the assumption that natural products are inherently safe. Print media is prolific among the information channels still able to freely discuss herbal supplements. METHOD: This study thematically analyses how 76 newspaper/magazine articles from the UK, Romania and Italy portray the potential risks and benefits of herbal supplements. RESULTS: Most articles referenced both risks and benefits and were factually accurate but often lacked context and impartiality. More telling was how the risks and benefits were framed in service of a chosen narrative, the paucity of authoritative information allowing journalists leeway to recontextualise herbal supplements in ways that serviced the goals and values of their specific publications and readerships. CONCLUSION: Providing sufficient information to empower consumers should not be the responsibility of print media, instead an accessible source of objective information is required.

Side effects of radiotherapy in breast cancer patients : The Internet as an information source.

AIM: Breast cancer is the most common cancer type among women necessitating adjuvant radiotherapy. As the Internet has become a major source of information for cancer patients, this study aimed to evaluate the quality of websites giving information on side effects of radiotherapy for breast cancer patients. METHODS: A patients' search for the English terms "breast cancer - radiotherapy - side effects" and the corresponding German terms "Brustkrebs - Strahlentherapie - Nebenwirkungen" was carried out twice (5 months apart) using the search engine Google. The first 30 search results each were evaluated using the validated 16-question DISCERN Plus instrument, the Health on the Net Code of Conduct (HONcode) certification and the Journal of the American Medical Association (JAMA) benchmark criteria. The overall quality (DISCERN score) of the retrieved websites was further compared to queries via Bing and Yahoo search engines. RESULTS: The DISCERN score showed a great range, with the majority of websites ranking fair to poor. Significantly superior results were found for English websites, particularly for webpages run by hospitals/universities and nongovernmental organizations (NGO), when compared to the respective German categories. In general, only a minority of websites met all JAMA benchmarks and was HONcode certified (both languages). We did not determine a relevant temporal change in website ranking among the top ten search hits, while significant variation occurred thereafter. Mean overall DISCERN score was similar between the various search engines. CONCLUSION: The Internet can give breast cancer patients seeking information on side effects of radiotherapy an overview. However, based on the currently low overall quality of websites and the lack of transparency for the average layperson, we emphasize the value of personal contact with the treating radio-oncologist in order to integrate and interpret the information found online.

Assessment of readability, quality and popularity of online information on ureteral stents.

OBJECTIVE: To evaluate the quality and readability of online information on ureteral stents. METHODS: Google.com was queried using the search terms "ureteric stent", "ureteral stent", "double J stent" and, "Kidney stent" derived from Google AdWords. Website popularity was determined using Google Rank and the Alexa tool. Website quality assessment was performed using the following criteria: Journal of the American Medical Association (JAMA) benchmarks, Health on the Net (HON) criteria, and a customized DISCERN questionnaire. The customized DISCERN questionnaire was developed by combining the short validated DISCERN questionnaire with additional stent-specific items including definition, placement, complications, limitations, removal and "when to seek help". Scores related to stent items were considered as the "stent score" (SS). Readability was evaluated using five readability tests. RESULTS: Thirty-two websites were included. The mean customized DISCERN score and "stent score" were 27.1 ± 7.1 (maximum possible score = 59) and 14.6 ± 3.8 (maximum possible score = 24), respectively. A minority of websites adequately addressed "stent removal" and "when to seek medical attention". Only two websites (6.3%) had HON certification (drugs.com, radiologyinfo.org) and only one website (3.3%) met all JAMA criteria (bradyurology.blogspot.com). Readability level was higher than the American Medical Association recommendation of sixth-grade level for more than 75% of the websites. There was no correlation between Google rank, Alexa rank, and the quality scores (P > 0.05). DISCUSSION: Among the 32 most popular websites on the topic of ureteral stents, online information was highly variable. The readability of many of the websites was far higher than standard recommendations and the online information was questionable in many cases. These findings suggest a need for improved online resources in order to better educate patients about ureteral stents and also should inform physicians that popular websites may have incomplete information.

In the patient's best interest: appraising social network site information for surrogate decision making.

This paper will discuss why and how social network sites ought to be used in surrogate decision making (SDM), with focus on a context like Singapore in which substituted judgment is incorporated as part of best interest assessment for SDM, as guided by the Code of Practice for making decisions for those lacking mental capacity under the Mental Capacity Act (2008). Specifically, the paper will argue that the Code of Practice already supports an ethical obligation, as part of a patient-centred care approach, to look for and appraise social network site (SNS) as a source of information for best interest decision making. As an important preliminary, the paper will draw on Berg's arguments to support the use of SNS information as a resource for SDM. It will also supplement her account for how SNS information ought to be weighed against or considered alongside other evidence of patient preference or wishes, such as advance directives and anecdotal accounts by relatives.

Dermatology on Instagram: An Analysis of Hashtags.

Forty-two percent of Americans search for health-related information on social media platforms, and forty-five percent of consumers report that social media health information influences their decision to seek care.

Designing a Patient Portal for Patient-Centered Care: Cross-Sectional Survey.

BACKGROUND: In recent literature, patient portals are considered as important tools for the delivery of patient-centered care. To date, it is not clear how patients would conceptualize a patient portal and which health information needs they have when doing so. OBJECTIVE: This study aimed (1) to investigate health information needs, expectations, and attitudes toward a patient portal and (2) to assess whether determinants, such as patient characteristics, health literacy, and empowerment status, can predict two different variables, namely the importance people attribute to obtaining health information when using a patient portal and the expectations concerning personal health care when using a patient portal. METHODS: We conducted a cross-sectional survey of the Flemish population on what patients prefer to know about their digital health data and their expectations and attitudes toward using a patient portal to access their electronic health record. People were invited to participate in the survey through newsletters, social media, and magazines. We used a questionnaire including demographics, health characteristics, health literacy, patient empowerment, and patient portal characteristics. RESULTS: We received 433 completed surveys. The health information needs included features such as being notified when one's health changes (371/396, 93.7%), being notified when physical parameters increase to dangerous levels (370/395, 93.7%), observing connections between one's symptoms or diseases or biological parameters (339/398, 85.2%), viewing the evolution of one's health in function of time (333/394, 84.5%), and viewing information about the expected effect of treatment (349/395, 88.4%). Almost 90% (369/412) of respondents were interested in using a patient portal. Determinants of patients' attachment for obtaining health information on a patient portal were (1) age between 45 and 54 years (P=.05); (2) neutral (P=.03) or interested attitude (P=.008) toward shared decision making; and (3) commitment to question physicians' decisions (P=.03, R2=0.122). Determinants of patients' expectations on improved health care by accessing a patient portal were (1) lower education level (P=.04); (2) neutral (P=.03) or interested attitude (P=.008) toward shared decision making; and (3) problems in understanding health information (P=.04; R2=0.106). CONCLUSIONS: The interest in using a patient portal is considerable in Flanders. People would like to receive alerts or some form of communication from a patient portal in case they need to act to manage their health. Determinants such as education, attached importance to shared decision making, difficulties in finding relevant health information, and the attached importance in questioning the decisions of physicians need to be considered in the design of a patient portal.

Assessing Competencies Needed to Engage With Digital Health Services: Development of the eHealth Literacy Assessment Toolkit.

BACKGROUND: To achieve full potential in user-oriented eHealth projects, we need to ensure a match between the eHealth technology and the user's eHealth literacy, described as knowledge and skills. However, there is a lack of multifaceted eHealth literacy assessment tools suitable for screening purposes. OBJECTIVE: The objective of our study was to develop and validate an eHealth literacy assessment toolkit (eHLA) that assesses individuals' health literacy and digital literacy using a mix of existing and newly developed scales. METHODS: From 2011 to 2015, scales were continuously tested and developed in an iterative process, which led to 7 tools being included in the validation study. The eHLA validation version consisted of 4 health-related tools (tool 1: "functional health literacy," tool 2: "health literacy self-assessment," tool 3: "familiarity with health and health care," and tool 4: "knowledge of health and disease") and 3 digitally-related tools (tool 5: "technology familiarity," tool 6: "technology confidence," and tool 7: "incentives for engaging with technology") that were tested in 475 respondents from a general population sample and an outpatient clinic. Statistical analyses examined floor and ceiling effects, interitem correlations, item-total correlations, and Cronbach coefficient alpha (CCA). Rasch models (RM) examined the fit of data. Tools were reduced in items to secure robust tools fit for screening purposes. Reductions were made based on psychometrics, face validity, and content validity. RESULTS: Tool 1 was not reduced in items; it consequently consists of 10 items. The overall fit to the RM was acceptable (Anderson conditional likelihood ratio, CLR=10.8; df=9; P=.29), and CCA was .67. Tool 2 was reduced from 20 to 9 items. The overall fit to a log-linear RM was acceptable (Anderson CLR=78.4, df=45, P=.002), and CCA was .85. Tool 3 was reduced from 23 to 5 items. The final version showed excellent fit to a log-linear RM (Anderson CLR=47.7, df=40, P=.19), and CCA was .90. Tool 4 was reduced from 12 to 6 items. The fit to a log-linear RM was acceptable (Anderson CLR=42.1, df=18, P=.001), and CCA was .59. Tool 5 was reduced from 20 to 6 items. The fit to the RM was acceptable (Anderson CLR=30.3, df=17, P=.02), and CCA was .94. Tool 6 was reduced from 5 to 4 items. The fit to a log-linear RM taking local dependency (LD) into account was acceptable (Anderson CLR=26.1, df=21, P=.20), and CCA was .91. Tool 7 was reduced from 6 to 4 items. The fit to a log-linear RM taking LD and differential item functioning into account was acceptable (Anderson CLR=23.0, df=29, P=.78), and CCA was .90. CONCLUSIONS: The eHLA consists of 7 short, robust scales that assess individual's knowledge and skills related to digital literacy and health literacy.

Information sharing across generations and environments (InfoSAGE): study design and methodology protocol.

BACKGROUND: Longevity creates increasing care needs for healthcare providers and family caregivers. Increasingly, the burden of care falls to one primary caregiver, increasing stress and reducing health outcomes. Additionally, little has been published on adults', over the age of 75, preferences in the development of health information sharing with family members using online platforms. This study aims to assess a novel, Internet based, family-centric communication and collaboration platform created to address the information needs of elders and their informal caregivers in a community setting. METHODS: This study is an internet-based, open prospective cohort study, enrolling dyad pairs of one adult over the age of 75 with one informal caregiver. Dyads will be offered to use the InfoSAGE online platform without prospective assignment. Participants will consent using an online process that enables participation from any location and shares important study and privacy details. The platform will enable the capture of search queries and tracking of functions such as tasks and discussions. Surveys every six months assess health status, health and social needs, and caregiver burden using validated instruments over a two-year period. We will use a mixed methods approach, utilizing qualitative survey data along with website usage analytic data. DISCUSSION: Analysis of the longitudinal usage and survey data will help to examine the patterns of family communication and health information seeking as the central older adult ages. We will use the study data to inform design recommendations relevant to a complex mixture of users, with special consideration to the needs of older adult users and potential physical limitations.

Do not forget the parents-Parents' concerns during transition to adult care for adolescents with congenital heart disease.

BACKGROUND: Growing up with congenital heart disease (CHD) often means transfer to adult care and lifelong medical follow-up. An optimal transition process usually involves a multipart collaboration between the patient, their parents and other family members, and the healthcare providers. Taking an active role while knowing when it is time to step aside can be difficult for all the concerned parties, even the healthcare professionals. The aim of the present study therefore, was to explore parents' expectations and needs during their adolescent's transition to adult care. METHOD: Semi-structured interviews were conducted with 18 parents of 16 adolescents (aged 13-18 years) with CHD in 4 pediatric cardiology settings in Sweden. The interviews were analysed with qualitative content analysis. RESULTS: The analysis resulted in 2 main themes: (a) Feeling secure-the importance of being prepared and informed. This theme focused on the need to be prepared and informed about transition and future transfer to adult care. (b) Recognizing when to hand over at the right time. This theme addressed the process of handing over the responsibility from the parent to the adolescents and contained handing over from pediatric care to adult care. CONCLUSION: Being prepared and informed about the upcoming transition process was essential. The parents underlined the importance of being involved in the transition planning for gradually handing over responsibility to the adolescent. They also considered establishing contact with the adult healthcare team before transfer as important and needed to be assured that CHD-related information of importance for the young person's daily life would be given.

The internet as a source of support for youth with chronic conditions: A qualitative study.

BACKGROUND: Adolescents living with chronic conditions often portray themselves as "healthy" online, yet use the Internet as one of their top sources of health information and social communication. There is a need to develop online support programs specific to adolescents with chronic conditions in order to provide a private space to discuss concerns. This paper endeavors to increase our understanding of the online support needs and wants of these adolescents and their interest in and preferences for an online support program. METHODS: A qualitative descriptive study using semistructured interviews was completed. Stratified purposive sampling was utilized to ensure a representative sample based on age and diagnosis. English speaking adolescents (aged 12-18 years) diagnosed with a chronic condition were recruited from clinic and inpatient areas across 3 paediatric hospitals in Canada. RESULTS: Thirty-three participants aged 15.3 ± 1.8 years (64% female) completed the study. The main topics identified were (a) the purpose of current online activity, (b) the benefits and challenges of existing online supports, and (c) a description of ideal online resources. The purpose of online activity was social networking, information, online gaming, and social support. When accessing health information online, participants prioritized websites that were easy to access and understand despite the trustworthiness of the site. The reported benefits and challenges varied across participants with many areas perceived as both a benefit and a challenge. The majority of participants were interested in participating in an online support program that included both accurate disease-related information and a community of other adolescents to provide social support. CONCLUSIONS: Adolescents with chronic conditions are interested in online support that encompasses health information and social support that is flexible and easy to navigate. Findings can be used to develop or adapt existing online support programs for adolescents with chronic conditions to help increase engagement and utilization.