Anonymity versus privacy: selective information sharing in online cancer communities.

BACKGROUND: Active sharing in online cancer communities benefits patients. However, many patients refrain from sharing health information online due to privacy concerns. Existing research on privacy emphasizes data security and confidentiality, largely focusing on electronic medical records. Patient preferences around information sharing in online communities remain poorly understood. Consistent with the privacy calculus perspective adopted from e-commerce research, we suggest that patients approach online information sharing instrumentally, weighing privacy costs against participation benefits when deciding whether to share certain information. Consequently, we argue that patients prefer sharing clinical information over daily life and identity information that potentially compromises anonymity. Furthermore, we explore whether patients' prior experiences, age, health, and gender affect perceived privacy costs and thus willingness to share information. OBJECTIVE: The goal of the present study is to document patient preferences for sharing information within online health platforms. METHODS: A total of 115 cancer patients reported sharing intentions for 15 different types of information, demographics, health status, prior privacy experiences, expected community utility, and privacy concerns. RESULTS: Factor analysis on the 15 information types revealed 3 factors coinciding with 3 proposed information categories: clinical, daily life, and identity information. A within-subject ANOVA showed a strong preference for sharing clinical information compared to daily life and identity information (F1,114=135.59, P=.001, η(2)=.93). Also, adverse online privacy experiences, age, and health status negatively affected information-sharing intentions. Female patients shared information less willingly. CONCLUSIONS: Respondents' information-sharing intentions depend on dispositional and situational factors. Patients share medical details more willingly than daily life or identity information. The results suggest the need to focus on anonymity rather than privacy in online communities.

Designing messaging to engage patients in an online suicide prevention intervention: survey results from patients with current suicidal ideation.

BACKGROUND: Computerized, Internet-delivered interventions can be efficacious; however, uptake and maintaining sustained client engagement are still big challenges. We see the development of effective engagement strategies as the next frontier in online health interventions, an area where much creative research has begun. We also argue that for engagement strategies to accomplish their purpose with novel targeted populations, they need to be tailored to such populations (ie, content is designed with the target population in mind). User-centered design frameworks provide a theoretical foundation for increasing user engagement and uptake by including users in development. However, deciding how to implement this approach to engage users in mental health intervention development is challenging. OBJECTIVE: The aim of this study was to get user input and feedback on acceptability of messaging content intended to engage suicidal individuals. METHODS: In March 2013, clinic intake staff distributed flyers announcing the study, "Your Feedback Counts" to potential participants (individuals waiting to be seen for a mental health appointment) together with the Patient Health Questionnaire. The flyer explained that a score of two or three ("more than half the days" or "nearly every day" respectively) on the suicide ideation question made them eligible to provide feedback on components of a suicide prevention intervention under development. The patient could access an anonymous online survey by following a link. After providing consent online, participants completed the anonymous survey. RESULTS: Thirty-four individuals provided data on past demographic information. Participants reported that they would be most drawn to an intervention where they knew that they were cared about, that was personalized, that others like them had found it helpful, and that included examples with real people. Participants preferred email invitations with subject lines expressing concern and availability of extra resources. Participants also provided feedback about a media prototype including a brand design and advertisement video for introducing the intervention. CONCLUSIONS: This paper provides one model (including development of an engagement survey, audience for an engagement survey, methods for presenting results of an engagement survey) for including target users in the development of uptake strategies for online mental health interventions.

Promoting business and entrepreneurial awareness in health care professionals: lessons from venture capital panels at medicine 2.0 conferences.

There are few mechanisms that bring the academic and business worlds together in a way that would maximize the success of health technology (health tech) start-ups by increasing researchers' knowledge about how to operate in the business world. Existing solutions (eg, technology transfer offices and dual degree MD/MBA programs) are often unavailable to researchers from outside the institution or to those who have already completed their primary education, such as practicing physicians. This paper explores current solutions and offers a partial solution: include venture capital (VC) panels in medical conferences. These VC panels educate academics on 2 important and interconnected issues: how to "pitch" their ideas in the business world and what to consider when creating a company. In these sessions, academia-based start-up companies present their ideas before a VC panel composed of professional investors and receive feedback on their idea, business plan, and presentation techniques. Recent panel recommendations from Medicine 2.0 conferences fell into 7 categories: (1) the product, service, or idea you are developing into a company, (2) determine market forces and identify the target audience, (3) describe your competitive advantage, (4) the business plan, (5) current and future resources and capabilities, (6) legal aspects, and (7) general advice on the art of pitching. The academic and business literature validates many of these recommendations suggesting that VC panels may be a viable and cost-effective introduction to business and entrepreneurial education for physicians and other health care professionals. Panels benefit not only the presenting companies, but also the physicians, psychologists, and other health care professionals attending the session. Incorporating VC panels into academic conferences might also illuminate the need for incorporating relevant business training within academia.

Internet and social media for health-related information and communication in health care: preferences of the Dutch general population.

BACKGROUND: Health care is increasingly featured by the use of Web 2.0 communication and collaborative technologies that are reshaping the way patients and professionals interact. These technologies or tools can be used for a variety of purposes: to instantly debate issues, discover news, analyze research, network with peers, crowd-source information, seek support, and provide advice. Not all tools are implemented successfully; in many cases, the nonusage attrition rates are high. Little is known about the preferences of the Dutch general population regarding the use of the Internet and social media in health care. OBJECTIVE: To determine the preferences of the general population in the Netherlands regarding the use of the Internet and social media in health care. METHODS: A cross-sectional survey was disseminated via a popular Dutch online social network. Respondents were asked where they searched for health-related information, how they qualified the value of different sources, and their preferences regarding online communication with health care providers. Results were weighed for the Dutch population based on gender, age, and level of education using official statistics. Numbers and percentages or means and standard deviations were presented for different subgroups. One-way ANOVA was used to test for statistical differences. RESULTS: The survey was completed by 635 respondents. The Internet was found to be the number one source for health-related information (82.7%), closely followed by information provided by health care professionals (71.1%). Approximately one-third (32.3%) of the Dutch population search for ratings of health care providers. The most popular information topics were side effects of medication (62.5%) and symptoms (59.7%). Approximately one-quarter of the Dutch population prefer to communicate with a health care provider via social media (25.4%), and 21.2% would like to communicate via a webcam. CONCLUSIONS: The Internet is the main source of health-related information for the Dutch population. One in 4 persons wants to communicate with their physician via social media channels and it is expected that this number will further increase. Health care providers should explore new ways of communicating online and should facilitate ways for patients to connect with them. Future research should aim at comparing different patient groups and diseases, describing best practices, and determining cost-effectiveness.

[The responsibilities arising from the use of information and communication technologies in health professional practice]. / Las responsabilidades derivadas del uso de las tecnologías de la información y comunicación en el ejercicio de las profesiones sanitarias.

The increasing use of Information and Communication Technologies (ICT) in the health setting has given rise to the current phenomenon of eHealth or eMedicine, terms equivalent to the cyberspace concept, but refer exclusively to health. Due to the appearance of Web 2.0 it can be stated that we are dealing with a phenomenon much greater than just using the technologies: we are facing a real social change, giving rise to that called Health 2.0. The legal regulation of this cyberspace requires two different types of rules. Some that regulate cyberspace itself, and others, the actions performed with its use and to those that appear applicable to conventional law. In this latter case, we are referring to the applying of already existing laws to actions performed using ICT, as is the case of medical actions. Within these latter situations, two clearly different ones have to be distinguished: the professional responsibilities arising from medical actions carried out within health organisation settings when the use of ICT is introduced, and those other actions carried out voluntarily, individually and privately, using personal media and devices. It is in these types of actions where the legality, as regards data protection and privacy of the patient, appears to be violated, and at the same time the professional may be held responsible.

Patients and professionals have different views on online patient information about cleft lip and palate (CL/P).

Parents of children with a cleft lip and/or palate (CL/P) and patients with CL/P actively search for online information about CL/P. The quality of this information has not been sufficiently evaluated. The aim of this study was to define quality criteria for online information about CL/P and assess the quality of frequently accessed websites. Patients, parents, and professionals were equally involved in all stages of this study. A literature review was performed to obtain known quality criteria for online information. These criteria were prioritized by patients, parents, and professionals. The most important criteria were used to rate the quality of four websites on CL/P. Forty-two quality items were extracted from the literature. Patients, parents, and professionals agreed on the importance of 16 of these items. New groups of patients, parents, and professionals assessed four websites on CL/P. Although the groups were like-minded in their overall assessment of the quality of the websites, distinct differences emerged between the groups in relation to certain items. This study shows the importance of patient participation in healthcare research, as well as a feasible approach to do so. Involving patients in composing online health information will set different priorities, which is necessary in establishing high quality information.

[Assessment method for mobile health applications in Spanish: The iSYScore index]. / Método de valoración de aplicaciones móviles de salud en español: el índice iSYScore.

The widespread of mobile smartphones among the population has resulted in a growing range of mobile applications in health using iOS and Android devices. The level of confidence that such applications deserve and the health information available online to the general population is a widely debated issue. The main objective of this work was to develop a tool -a scale-, for evaluating the reliability of health apps. The scale was developed using a systematic evidence-based approach, and with an expert consensus, built with a Delphi process. This was followed by a health app catalogue, which was used to test and validate our method that helps to recommend the best apps for non-medical experts across 3 different user interest axes: 1) popularity and interest; 2) trust and quality; and 3) usefulness.

Social media targeting of health messages. A promising approach for research and practice.

In their contribution, Remschmidt and colleagues (1) put forward an innovative approach for recruiting female, German study participants from diverse social and ethnical backgrounds to assess their knowledge, attitudes, and behaviors regarding HPV vaccination. The approach involves placing advertisements on the social media platform Facebook that specify tags for not only the sought after socio-demographic characteristics (age, gender) but also self-relevant aspects of the target group. These tags determine which Facebook users will see the ad. By sequentially adjusting the tags, the researchers were able to recruit different sub-populations, resulting in a final sample similar to a representative German sample for a particular age group.

Patients' and health professionals' use of social media in health care: motives, barriers and expectations.

OBJECTIVE: To investigate patients' and health professionals' (a) motives and use of social media for health-related reasons, and (b) barriers and expectations for health-related social media use. METHODS: We conducted a descriptive online survey among 139 patients and 153 health care professionals in obstetrics and gynecology. In this survey, we asked the respondents about their motives and use of social network sites (SNS: Facebook and Hyves), Twitter, LinkedIn, and YouTube. RESULTS: Results showed that patients primarily used Twitter (59.9%), especially for increasing knowledge and exchanging advice and Facebook (52.3%), particularly for social support and exchanging advice. Professionals primarily used LinkedIn (70.7%) and Twitter (51.2%), for communication with their colleagues and marketing reasons. Patients' main barriers for social media use were privacy concerns and unreliability of the information. Professionals' main barriers were inefficiency and lack of skills. Both patients and professionals expected future social media use, provided that they can choose their time of social media usage. CONCLUSION: The results indicate disconcordance in patients' and professionals' motives and use of social media in health care. PRACTICE IMPLICATIONS: Future studies on social media use in health care should not disregard participants' underlying motives, barriers and expectations regarding the (non)use of social media.

Moving from physician-centered care towards patient-centered care for Parkinson's disease patients.

Today's society is changing rapidly and individuals increasingly favor an active role in designing their own lives. Contemporary patients are no exception, but the present health care system-which is organized primarily from the provider's perspective-is not yet prepared for this development. Here, we argue that an alternative way to organize health care, namely more from the patient's perspective, may help to contain costs, while improving the quality, safety and access to care. This involves a redefinition of the patient-doctor relationship, such that patients are no longer regarded as passive objects, but rather as active subjects who work as partners with health care professionals to optimize health ('participatory medicine'). The opportunities that come with such a collaborative and patient-centered care model are reviewed within the context of patients with Parkinson's disease. We also discuss societal and Parkinson-specific barriers that could impede implementation of this alternative care model to the management of Parkinson's disease and other chronic conditions.

La Salud 2. 0 y la atención de la salud en la era digital / Health 2. 0 and the healthcare in the digital era

Una observación detenida de nuestra sociedad pone de manifiesto un cambio radical en la forma en que accedemos, utilizamos y producimos la información; acompañado con un incremento sostenido del volumen de información disponible. Estos cambios son en su mayoría debidos al impacto que han tenido Internet, las Tecnologías de la Información y la Comunicación (TIC) y uno de sus productos más recientes las redes sociales. La salud y la educación son de las áreas más impactadas por los cambios ocasionados por la emergencia de internet y las TIC, cambios estos identificados como características de la era digital. La mayoría de estos cambios suponen ventajas para los procesos de atención de salud, sus actores y componentes. Dos de los nuevos campos de acción son: a) La eSalud, definida como un campo emergente en la intersección de la informática médica, salud pública y las iniciativas privadas, en referencia a los servicios de salud y la información entregada o mejoradas a través de Internet y las tecnologías relacionadas; y b) La Salud 2.0, como visión integral e innovadora del modelo de sanidad, que utiliza como herramientas principales a la Web y las Aplicaciones 2.0. El documento revisa estos conceptos y como ellos colaboran con: los ciudadanos, quienes saben cada día más sobre la salud, la enfermedad y sus condicionantes; los profesionales de la salud y el público en general. Tratando de hacer llegar a través de estos medios las mayores ventajas a todas las comunidades.

Close observation of our society reveals a radical change in the way we access, use and produce information, together with the increase in the volume of information available. These changes are mostly by the impact who have Internet, Information Technology and Communication (ICT) and one of its latest products social networks. Health and education are the areas most impacted by the changes caused by the emergence of Internet and ICT, these changes identified as characteristics of the digital age. Most of these changes involve advantages for health care processes, actors and components. Two of the new fields of action are: a) eHealth, defined as an emerging field in the intersection of medical informatics, public health and private initiatives, referring to health services and information delivered or enhanced through Internet and related technologies, and b) the Health 2.0, as innovative holistic health model, using as main tools for web and Applications 2.0. The paper reviews these concepts and how they work with: people who know more and more about health, disease and its determinants, health professionals and the general public. Trying to get through these means, the greatest benefits to all communities.