INTRODUCTION: Electronic health resources are becoming prevalent. However, consumer health information is still predominantly text based. Relying on text alone to deliver health information may not be the most effective way to promote learning or sufficient to meet consumer needs. OBJECTIVES: This study assessed a) whether adding images to text and/or replacing text with narration influenced memory for Consumer Medication Information (CMI), b) if participants perceived CMI formats differently in terms of comprehensibility, utility, or design quality, and if they preferred one format overall c) what participants’ information needs were with respect to CMI. METHODS: Participants’ (N = 36) remembered CMI presented in three formats: 1) Text, 2) Text + Images, and 3) Narration + Images. Additionally, participants rated the three CMI formats in terms of comprehensibility, utility, design quality and overall preference. Semi-structured interviews were used to investigate participants’ opinions and preferences regarding the CMI formats, as well as their experiences with CMI and information needs. RESULTS: No significant differences in memory were observed, F(2, 70) = 0.1, p = 0.901. Thus, this study did not find evidence that Mayer’s (2001) multimedia or modality principles apply to CMI. Despite the absence of effects on memory, CMI format impacted perceptions of the material. Participants rated the Text + Images format highest in terms of comprehensibility, X2(2) = 26.5, p < .001 and design quality, X2(2) = 35.69, p < .001. However, after correcting for multiple comparisons, no significant differences in utility ratings between the three formats were observed, X2(2) = 8.21, p < .016. Further, overall preferences revealed that the most participants’ chose the Text + Images format as their favourite (n = 27, 75%) and Text as their least favourite (n = 23, 63.8%). Directed and conventional content analysis were used to explore participants’ CMI preferences and information needs. Various aspects related to provision, comprehensibility, utility, and design quality all appeared to affect perceptions of CMI and whether or not participants used or would use it. Results of this analysis, paired with evidence from other studies, were used to develop a model proposing factors that influence CMI use. CONCLUSION: This study investigated the potential impact of design and distribution changes on perceptions of CMI. Despite the lack of differences in memory, participants’ perceptions of the formats differed. Findings from this study could be used to inform future research on how CMI could be designed to better suit the needs of consumers and potentially increase the likelihood it is used. / Graduate

Indiana University-Purdue University Indianapolis (IUPUI) / Autoimmune Hepatitis (AIH), an incurable chronic condition of unknown cause where the body attacks its own liver, is a rare disease, with a current diagnosed worldwide prevalence of < 150,000. Inadequately treated, AIH can cause progressive liver damage and ultimately liver failure. A wide variety of symptoms are associated with AIH including severe fatigue, joint pain, depression, anxiety, and insomnia. While precision medicine’s genomics has attempted to shed light on the disease, other non-molecular “-omics” approaches can be taken in studying AIH patients, who often utilize social media to gather information from other patients or care providers to apply to their own AIH disease course. It is proposed that these patient-generated social mediomes can create self-report health records for patients – and facets of their lives - otherwise unreachable by conventional research. In this feasibility study, I examined in an exploratory fashion the social mediome of a large (N > 1000) gathering of AIH patients and caregivers as present on a Facebook Group to determine the potential of mining various types health-related user information. The following types of information were mined, with feasible indicating a reliability of F >= 0.670: 1) Types of health information shared and structures of information sharing (Feasible) 2) Types and directionality of support provided by and to users (Portions feasible) 3) Clinical factors (AIH-related and otherwise) disclosed by users a. Medication intake (Feasible) b. Signs and symptoms (including pain and injury) and diagnosed comorbidities (Portions feasible) c. Results of disease monitoring blood tests (Portions feasible) 4) Contextual (non-clinical; environmental; social) factors disclosed by users (Detection of which type of factor discussed occasionally feasible). The resulting knowledge is required to adequately describe the disease not only clinically, but also environmentally and socially, and will form part of the basis for future disease studies.

No description available.

The internet has radically changed the way people obtain and interact with information about diseases, treatments, and conditions. Yet, our understanding of how people access and use health information to make decisions- in other words, their health literacy- has not progressed. The overall aim of this thesis is to assess the extent to which health literacy is a valid and useful construct for policy and practice related to online health resources. A mixed-methods research programme of five studies was undertaken, influenced by realist evaluation methodology. First, to ascertain engagement with user-generated online health content (UGC) in the UK, analysis of a large European survey was undertaken. Then, the uncertainty regarding the relationship between health literacy and outcomes was addressed by a systematic review and qualitative analysis of health literacy measures. Results of these two studies informed interviews carried out with 13 'key informants': policymakers and primary care clinicians in the UK with a particular interest in health literacy and/or online information. A systematic review, incorporating a traditional narrative review and a realist review, evaluated existing trials addressing how effects of online resources vary by health literacy level. Finally, data were analysed from a feasibility randomized controlled trial, comparing usage and outcomes of accessing a 'personal experiences'-based asthma website (representing curated user-generated content) versus a 'facts and figures'-based website. Participant health literacy was assessed using an index identified from the systematic review of measures, and website usage was tracked. Approximately 25% of UK internet users engage with UGC at least monthly. The most frequent users were younger, more likely to be male, and to be carers for someone with a long-term illness. Three themes were identified from health literacy measurement: 'appropriate health decisions', 'ability to obtain healthcare services', and 'confidence'. Key informants noted the lack of clarity about how health literacy influences outcomes, and suggested that personal preferences and digital access and skills may be more relevant than health literacy for policy and practice. Existing trials of online resources in which participant health literacy was measured were mostly at high risk of bias; some possible explanations of how these interventions should work in people with low health literacy were that they may experience higher data entry burden related to chronic diseases, and that they may prefer simulated face-to-face communication. Finally, there were no differences between health literacy groups in the feasibility trial regarding usage or outcomes related to either the 'facts and figures' or 'personal experiences' websites. Taken together, these results question the validity and appropriateness of health literacy as a key objective or consideration in the development or use of online resources. While health literacy has value as a general idea, this thesis demonstrates that it may no longer be the right construct to guide intervention development and implementation to improve health outcomes.

Information and communication technologies can be used to deliver healthcare services and improve the healthcare system. Any electronic healthcare system whose usage results in the efficient and enhanced quality of healthcare is an eHealth system and can be beneficial for medical enterprises. Despite the advantages that eHealth systems offer, medical enterprises are often reluctant to abandon their paper-based systems and embrace eHealth solutions. Through a review of existing eHealth literature, this study identified generic technologies used within South African medical enterprises. Fourteen (14) technologies, that represent a basket of eHealth systems for supporting the business management, professional clinical informatics, patient information storage and consumer health informatics functional areas, were identified. The study then aimed to determine the state of adoption of these technologies as well as the factors influencing adoption. The technological, organisational and environmental (TOE) factors that contributed to the current state of adoption were identified through a review of existing TOE literature. A model that explores the effects of these pre-determined TOE factors on the propensity to adopt eHealth was developed and tested. A cross-sectional, quantitative study was carried out and survey data was collected from a sample of 130 medical enterprises in South Africa. Data was collected using a structured questionnaire. Correlation analysis was used to test the model’s hypotheses and hierarchical regression was used to test the overall TOE model. By using the TOE framework, the study has provided a theoretical contribution and addressed a gap in the literature into the barriers and determinants of the adoption of information and communication technologies (ICTs) in healthcare. The results of the study show that South African medical enterprises use systems that range from simple electronic fund transfer systems to more complex electronic record and clinical decision support systems. Of the 14 technologies that were identified, business information systems such as medical aid claims submission systems and electronic record systems for patient and fee related information were the most adopted while a steady, but continued increase in the adoption of clinical health information systems was observed. Specifically, the study reveals that electronic fund transfer systems are the most adopted systems while ePrescription systems are the least used. Furthermore, the study shows that in addition to the enterprises’ operating period, perceived benefits, IT infrastructure, senior clinician involvement, resource commitment and external pressure are correlated with the propensity to adopt while system complexity is a barrier to technology adoption.

Abstract The potential of information technologies to enable fundamental and enduring change in individuals’ health and well-being activities has recently gained significant research and policy attention. Moreover, there has been increasing interest in persuasive systems that are designed to induce and influence people to change their attitudes and behaviors. This dissertation consists of five studies, including two qualitative studies and three quantitative field studies (including 616 real users of such persuasive systems), that are closely related and successively build upon each other to jointly address the central research question: To what extent persuasive systems design has an influence on consumers’ intention to adopt health behavior change support systems? The foremost conceptual foundation is the work on persuasive systems design, which further elaborates the features, affordances, and capabilities of systems that can be effective in inducing short-term as well as sustained behavior. The focal point is on the four distinct categories of persuasive systems design: (i) primary task support; (ii) dialogue support; (iii) perceived system credibility; and (iv) social influence. The interplay between the categories and other related constructs, such as unobtrusiveness and design aesthetics, is investigated through rigorous statistical analyses, including partial least structural equation modeling. The results demonstrate that persuasive systems design has a significant impact on consumers’ adoption of health behavior change support systems in different stages of adoption. The work addresses a problem salient to research, policy, and practice and builds upon strong theoretical and conceptual foundations. The research also extends prior technology adoption literature in information systems in a useful way by examining questions related to the design of systems in a novel and consequential domain. / Tiivistelmä Informaatioteknologian rooli ja potentiaali yksilöiden terveyden ja hyvinvoinnin edistämisessä on viime aikoina saanut merkittävää huomiota sekä tutkimuskentällä että julkisessa keskustelussa. Kasvavaa kiinnostusta on osoitettu erityisesti vakuuttaviin tietojärjestelmiin, jotka ovat suunniteltu vaikuttamaan ihmisten asenteisiin ja käyttäytymiseen. Väitöskirja koostuu yhteensä viidestä tutkimuksesta, joista kaksi on laadullisia tutkimuksia ja kolme määrällisiä kenttätutkimuksia. Kenttätutkimuksissa järjestelmiä on tutkittu yhteensä 616 loppukäyttäjällä. Väitöstyön tutkimukset liittyvät läheisesti toisiinsa ja vastaavat yhdessä keskeiseen tutkimuskysymyksen: missä määrin vakuuttavien järjestelmien suunnittelumenetelmillä on vaikutusta kuluttajien aikomukseen ottaa käyttöön terveyskäyttäytymisen muutoksia tukevia järjestelmiä? Työn tärkein käsitteellinen perusta kytkeytyy vakuuttavien järjestelmien suunnitteluun, jossa käsitellään yksityiskohtaisesti järjestelmien ominaisuuksia, käyttömahdollisuuksia ja valmiuksia, jotka voivat olla tehokkaita sekä lyhyen aikavälin että pysyvän käyttäytymisen muutoksen tukemisessa. Väitöstyön keskeinen näkökulma on neljässä vakuuttavan suunnittelun kategoriassa: (i) ensisijaisen tehtävän tukemisessa; (ii) käyttäjän ja järjestelmän välisen vuoropuhelun tukemisessa; (iii) järjestelmän koetussa uskottavuudessa ja (iv) sosiaalisessa vaikutuksessa. Kyseisten kategorioiden vuorovaikutusta ja yhteyksiä on tutkittu tilastollisten analyysien ja rakenneyhtälömallien kautta. Sen lisäksi työssä on paneuduttu aiheeseen tiiviisti liittyvien tekijöiden, kuten teknologian “tunkeilemattomuuden” ja suunnitteluestetiikan merkitykseen teknologian käyttöönotossa. Väitöskirjan tulokset osoittavat, että vakuuttavien järjestelmien suunnittelumenetelmillä on merkittävä vaikutus kuluttajien aikeisiin ottaa käyttöön ja käyttää terveyskäyttäytymisen muutoksia tukevia järjestelmiä. Väitöstyö perustuu vahvaan teoreettis-käsitteelliseen viitekehykseen ja käsittelee tutkimusongelmaa, joka on relevantti tutkimuksen, käytännön sekä julkisen päätöksenteon kannalta. Väitöstutkimus lisää hyödyllisellä ja uudella tavalla tietojärjestelmätieteen tietämystä teknologioiden käyttöönottoon liittyen.

Health information technology (HIT) aims to improve healthcare services by means of technological tools. Patient centered technologies such as personal health records are relatively new HIT tools that enable individuals to get involved in their health management activities. These tools enable the transformation of health consumer behavior from one of passive health information consumers to that of active managers of their health information. This new role is more interactive and engaged, and with such tools, patients can better navigate their lives, and exercise more control over their treatments, hence potentially also leading to improvement in the quality of health services. Despite the benefits of using personal health record systems for health consumers, the adoption rate of these systems remains low. Many free and paid services have not received the uptake that had been anticipated when these services were first introduced. This study investigates some factors that affect the adoption of these systems, and may shed light on some potential reasons for low adoption rates. In developing the theoretical model of this study, social cognitive theory (SCT) and technology acceptance model (TAM) were utilized. The theoretical model was validated through a quantitative survey-based methodology, and the results were derived using structural equation modeling techniques. The key findings of this study highlight the role of individual and environmental factors as determinants of end-user behavior in the adoption of personal health records. The results show that in addition to perceptions of usefulness and ease of use, factors such as social norms and technology awareness are also significantly associated with various factors that directly and indirectly affect intention to use PHRs Based on the results obtained in this study, recommendations are offered for technology providers, and possible directions are proposed for academic researchers.

abstract: Sensitive data sharing presents many challenges in case of unauthorized disclosures, including stigma and discrimination for patients with behavioral health conditions (BHCs). Sensitive information (e.g. mental health) warrants consent-based sharing to achieve integrated care. As many patients with BHCs receive cross-organizational behavioral and physical health care, data sharing can improve care quality, patient-provider experiences, outcomes, and reduce costs. Granularity in data sharing further allows for privacy satisfaction. Though the subjectivity in information patients consider sensitive and related sharing preferences are rarely investigated. Research, federal policies, and recommendations demand a better understanding of patient perspectives of data sensitivity and sharing. The goal of this research is to enhance the understanding of data sensitivity and related sharing preferences of patients with BHCs. The hypotheses are that 1) there is a diversity in medical record sensitivity and sharing preferences of patients with BHCs concerning the type of information, information recipients, and purpose of sharing; and 2) there is a mismatch between the existing sensitive data categories and the desires of patients with BHCs. A systematic literature review on methods assessing sensitivity perspectives showed a lack of methodologies for characterizing patient perceptions of sensitivity and assessing the variations in perceptions from clinical interpretations. Novel informatics approaches were proposed and applied using patients’ medical records to assess data sensitivity, sharing perspectives and comparing those with healthcare providers’ views. Findings showed variations in perceived sensitivity and sharing preferences. Patients’ sensitivity perspectives often varied from standard clinical interpretations. Comparison of patients’ and providers’ views on data sensitivity found differences in sensitivity perceptions of patients. Patients’ experiences (family history as genetic data), stigma towards category definitions or labels (drug “abuse”), and self-perceptions of information applicability (alcohol dependency) were influential factors in patients’ sensitivity determination. This clinical informatics research innovation introduces new methods using medical records to study data sensitivity and sharing. The outcomes of this research can guide the development of effective data sharing consent processes, education materials to inform patients and providers, granular technologies segmenting electronic health data, and policies and recommendations on sensitive data sharing. / Dissertation/Thesis / Doctoral Dissertation Biomedical Informatics 2020

La utilització d'Internet com a font d'informació sanitària és molt freqüent. La qualitat d'aquesta informació és extraordinàriament variable. Els segells de qualitat presents a les webs mediques, concedits per sistemes d'acreditació, constitueixen un instrument de millora dels serveis d'informació sanitària a Internet.A la present tesi s'analitzen les propostes i recomanacions de les principals iniciatives d'acreditació, s'estudia la percepció que tenen els responsables de webs mediques respecte a la utilitat dels segells d'acreditació i la prevalença d'ús d'aquests segells en les webs de contingut sanitari.Conclusions: la gran diversitat de recomanacions d'acreditació dificulta l'estandardització, els responsables de webs sanitàries reconeixen que el segell de WMA influeix positivament en la qualitat d'aquestes webs i existeix un ús moderat dels segells de qualitat i les webs que els presenten acostumen a ser de millor qualitat que el resta. / La utilización de Internet como fuente de información sanitaria es muy frecuente. La calidad de esta información es extraordinariamente variable. Los sellos de calidad presentes en las webs médicas, otorgados mediante sistemas de acreditación, constituyen un instrumento de mejora de los servicios de información sanitaria en Internet.En la presente tesis se analizan las propuestas y recomendaciones de las principales iniciativas de acreditación, se estudia la percepción que tienen los responsables de webs médicas respecto a la utilidad de los sellos de acreditación y la prevalencia de uso de dichos sellos de calidad en las webs de contenido sanitario. Conclusiones: la gran diversidad de recomendaciones de acreditación dificulta la estandarización, los responsables de webs sanitarias reconocen que el sello de WMA influye positivamente en la calidad de dichas webs, existe un uso moderado de los sellos de calidad y las webs que los presentan acostumbran a ser de mejor calidad que el resto. / The use of Internet as a health information source is very common. The quality of this information is widely variable. The quality seals and trust marks owned by the medical websites and granted by accreditation programmes, are good tools to improve the health services on the Internet. In this dissertation the different guidelines of the main accreditation programmes are analysed. The perception of the responsible personnel in charge of medical websites on the accreditation seal usefulness is studied as well as the prevalence usage of the quality seals in these web sites. Conclusions: the standardization is very difficult considering the wide number of guidelines and quality criteria. The responsible personnel in charge of medical websites admit that the WMA seal has a positive influence in the quality of their websites and that the seals are moderately used although the webs presenting them are usually of a higher quality then the rest.

This research has examined how Information and Communication Technologies (ICTs) can promote healthy eating habits amongst African Americans in low-income neighborhoods, a population that faces disproportionately high rates of diet-related health problems. In this dissertation, I describe the formative research I conducted to obtain system design guidelines and how I used those guidelines to develop two applications: EatWell and Community Mosaic. I also describe the results of the in-depth field studies I conducted to evaluate each application. Both EatWell and Community Mosaic incorporate the cultural construct of collectivism, a social orientation in which interdependence and communal responsibility are valued over individual goals and independence. As researchers have generally characterized the African American culture as collectivistic and argued for the value of designing collectivistic health interventions for this population, I examined the implications of taking such an approach to designing health promotion technologies. EatWell and Community Mosaic are collectivistic because they empower users to care for the health of their local community by helping others learn practical, locally-relevant healthy eating strategies. I discuss the results of my formative fieldwork and system evaluations, which characterize the value, challenge and nuances of developing community-based health information sharing systems for specific cultural contexts. By focusing on health disparities issues and the community social unit, I extend previous health technology research within Human-Computer Interaction (HCI). In particular, my results describe 1) a set of characteristics that help make shared material useful and engaging, 2) how accessing this information affects how people view the feasibility of eating well in their local context, 3) the way in which sharing information actually benefits the contributor by catalyzing personal behavior reflection, analysis and modification and 4) how sharing information and seeing that information's impact on others can help to build individuals' capacity to be a community health advocate. In addition, my work shows how examining cultural generalizations such as collectivism is not a straightforward process but one that requires careful investigation and appreciation for the way in which such generalizations are (or are not) manifested in the lives of individual people. I further contribute to HCI by presenting a set of important considerations that researchers should make when designing and evaluating community-based health systems. I conclude this dissertation by outlining directions for future HCI research that incorporates an understanding of the relationship between culture and health and that attempts to address health disparities in the developed world.