Background: The Internet is increasingly used as a medium for the delivery of interventions designed to promote health behavior change. However, reviews of these interventions to date have not systematically identified intervention characteristics and linked these to effectiveness. Objectives: The present review sought to capitalize on recently published coding frames for assessing use of theory and behavior change techniques to investigate which characteristics of Internet-based interventions best promote health behavior change. In addition, we wanted to develop a novel coding scheme for assessing mode of delivery in Internet-based interventions and also to link different modes to effect sizes. Methods: We conducted a computerized search of the databases indexed by ISI Web of Knowledge (including BIOSIS Previews and Medline) between 2000 and 2008. Studies were included if (1) the primary components of the intervention were delivered via the Internet, (2) participants were randomly assigned to conditions, and (3) a measure of behavior related to health was taken after the intervention. Results: We found 85 studies that satisfied the inclusion criteria, providing a total sample size of 43,236 participants. On average, interventions had a statistically small but significant effect on health-related behavior (d+ = 0.16, 95% CI 0.09-0.23). More extensive use of theory was associated with increases in effect size (P = .049), and, in particular, interventions based on the theory of planned behavior tended to have substantial effects on behavior (d+ = 0.36, 95% CI 0.15-0.56). Interventions that incorporated more behavior change techniques also tended to have larger effects compared to interventions that incorporated fewer techniques (P < .001). Finally, the effectiveness of Internet-based interventions was enhanced by the use of additional methods of communicating with participants, especially the use of short message service (SMS), or text, messages. Conclusions: The review provides a framework for the development of a science of Internet-based interventions, and our findings provide a rationale for investing in more intensive theory-based interventions that incorporate multiple behavior change techniques and modes of delivery. [J Med Internet Res 2010;12(1):e4]

Using the Internet to promote health behavior change: A systematic review and meta-analysis of the impact of theoretical basis, use of behavior change techniques, and mode of delivery on efficacy

Background: Given the rapid changes in the communication landscape brought about by participative Internet use and social media, it is important to develop a better understanding of these technologies and their impact on health communication. The first step in this effort is to identify the characteristics of current social media users. Up-to-date reporting of current social media use will help monitor the growth of social media and inform health promotion/communication efforts aiming to effectively utilize social media. Objective: The purpose of the study is to identify the sociodemographic and health-related factors associated with current adult social media users in the United States. Methods: Data came from the 2007 iteration of the Health Information National Trends Study (HINTS, N = 7674). HINTS is a nationally representative cross-sectional survey on health-related communication trends and practices. Survey respondents who reported having accessed the Internet (N = 5078) were asked whether, over the past year, they had (1) participated in an online support group, (2) written in a blog, (3) visited a social networking site. Bivariate and multivariate logistic regression analyses were conducted to identify predictors of each type of social media use. Results: Approximately 69% of US adults reported having access to the Internet in 2007. Among Internet users, 5% participated in an online support group, 7% reported blogging, and 23% used a social networking site. Multivariate analysis found that younger age was the only significant predictor of blogging and social networking site participation; a statistically significant linear relationship was observed, with younger categories reporting more frequent use. Younger age, poorer subjective health, and a personal cancer experience predicted support group participation. In general, social media are penetrating the US population independent of education, race/ethnicity, or health care access. Conclusions: Recent growth of social media is not uniformly distributed across age groups; therefore, health communication programs utilizing social media must first consider the age of the targeted population to help ensure that messages reach the intended audience. While racial/ethnic and health status–related disparities exist in Internet access, among those with Internet access, these characteristics do not affect social media use. This finding suggests that the new technologies, represented by social media, may be changing the communication pattern throughout the United States. [J Med Internet Res 2009;11(4):e48]

Social media use in the United States: implications for health communication.

Background: Many eHealth technologies are not successful in realizing sustainable innovations in health care practices. One of the reasons for this is that the current development of eHealth technology often disregards the interdependencies between technology, human characteristics, and the socioeconomic environment, resulting in technology that has a low impact in health care practices. To overcome the hurdles with eHealth design and implementation, a new, holistic approach to the development of eHealth technologies is needed, one that takes into account the complexity of health care and the rituals and habits of patients and other stakeholders. Objective: The aim of this viewpoint paper is to improve the uptake and impact of eHealth technologies by advocating a holistic approach toward their development and eventual integration in the health sector. Methods: To identify the potential and limitations of current eHealth frameworks (1999–2009), we carried out a literature search in the following electronic databases: PubMed, ScienceDirect, Web of Knowledge, PiCarta, and Google Scholar. Of the 60 papers that were identified, 44 were selected for full review. We excluded those papers that did not describe hands-on guidelines or quality criteria for the design, implementation, and evaluation of eHealth technologies (28 papers). From the results retrieved, we identified 16 eHealth frameworks that matched the inclusion criteria. The outcomes were used to posit strategies and principles for a holistic approach toward the development of eHealth technologies; these principles underpin our holistic eHealth framework. Results: A total of 16 frameworks qualified for a final analysis, based on their theoretical backgrounds and visions on eHealth, and the strategies and conditions for the research and development of eHealth technologies. Despite their potential, the relationship between the visions on eHealth, proposed strategies, and research methods is obscure, perhaps due to a rather conceptual approach that focuses on the rationale behind the frameworks rather than on practical guidelines. In addition, the Web 2.0 technologies that call for a more stakeholder-driven approach are beyond the scope of current frameworks. To overcome these limitations, we composed a holistic framework based on a participatory development approach, persuasive design techniques, and business modeling. Conclusions: To demonstrate the impact of eHealth technologies more effectively, a fresh way of thinking is required about how technology can be used to innovate health care. It also requires new concepts and instruments to develop and implement technologies in practice. The proposed framework serves as an evidence-based roadmap.

/pdf/a-holistic-framework-to-improve-the-uptake-and-impact-of-vi6b8x1hrs.pdf

A holistic framework to improve the uptake and impact of eHealth technologies.

A new class of patient-driven health care services is emerging to supplement and extend traditional health care delivery models and empower patient self-care. Patient-driven health care can be characterized as having an increased level of information flow, transparency, customization, collaboration and patient choice and responsibility-taking, as well as quantitative, predictive and preventive aspects. The potential exists to both improve traditional health care systems and expand the concept of health care though new services. This paper examines three categories of novel health services: health social networks, consumer personalized medicine and quantified self-tracking.

Emerging Patient-Driven Health Care Models: An Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking

Background: With online health information becoming increasingly popular among patients, concerns have been raised about the impact of patients’ Internet health information-seeking behavior on their relationship with physicians. Therefore, it is pertinent to understand the influence of online health information on the patient-physician relationship. Objective: Our objective was to systematically review existing research on patients’ Internet health information seeking and its influence on the patient-physician relationship. Methods: We systematically searched PubMed and key medical informatics, information systems, and communication science journals covering the period of 2000 to 2015. Empirical articles that were in English were included. We analyzed the content covering themes in 2 broad categories: factors affecting patients’ discussion of online findings during consultations and implications for the patient-physician relationship. Results: We identified 18 articles that met the inclusion criteria and the quality requirement for the review. The articles revealed barriers, facilitators, and demographic factors that influence patients’ disclosure of online health information during consultations and the different mechanisms patients use to reveal these findings. Our review also showed the mechanisms in which online information could influence patients’ relationship with their physicians. Conclusions: Results of this review contribute to the understanding of the patient-physician relationship of Internet-informed patients. Our main findings show that Internet health information seeking can improve the patient-physician relationship depending on whether the patient discusses the information with the physician and on their prior relationship. As patients have better access to health information through the Internet and expect to be more engaged in health decision making, traditional models of the patient-provider relationship and communication strategies must be revisited to adapt to this changing demographic. [J Med Internet Res 2017;19(1):e9]

https://ink.library.smu.edu.sg/cgi/viewcontent.cgi?article=4892&context=sis_research

Internet health information seeking and the patient-physician relationship: A systematic review

Subject: Results of our ongoing Study on the Potential of Social Computing for Biomedical Research in Rare Diseases.

Rationale of our study: Rare Diseases (RDs) affect 6-8 % of the European population, approximately 25 million citizens. There exist between 5000 and 8000 RDs of which 80 % have a genetic origin. Because of their rarity, these diseases are hardly observed in basic diagnostic procedures and pathways by clinicians, resulting in under-diagnosing and/or on longer waiting periods needed to get the correct. Research on rare diseases (RDs) has traditionally been hindered by the fact that cases, clinicians, researchers and resources (pharmaceutical companies have lacked return on investment) are scattered. One of the key characteristics of social computing is its ability to enable powerfully user-created content. Social Computing, also known as the Web 2.0 has the potential to connect up all the actors and stakeholders, especially patients and biomedical researchers. These activities and networks are already allowing a critical mass of knowledge to be gathered, from both patients and researchers - albeit in an unstructured manner.

Objectives: To assess the capability of social networks to enable sustainable research on rare diseases, by allowing patients to be knowledge generators, in synergy with biomedical researchers, and to propose a structured construct to dramatically increase this synergy. Specific objectives of our research include: a) the assessment of opportunities and challenges of social networks for research, from the point of view of patients, formal and informal carers, clinicians, researchers, industry and society; b) a proposal for a construct to structuring and making efficient this potential; c) the derivation of policy options at EU level as to develop this construct; d) the analysis of relevant implications for privacy and security of social computing related activities in this realm.

Applied method: We have applied a 3-step methodology: 1) Browsing current experiences (there are scarce but there are some examples, e.g. Autism: IAN Project http://www.ianproject.org/ and OAR http://www.researchautism.org/); while specifically checking the relevant social computing-based applications, if any. 2) Holding an expert workshop to ascertain the opportunities and challenges; and 3) proposing a structure for this construct, partly based on Science 2.0 theories and also on some practical cases.

Preliminary conclusions: Though RDs affect only 6-8% of European citizens, Information Society Technologies platforms using social computing approaches have a considerable potential for research on RDs, not only as regards its sustainability but also its profitability for both the pharmaceutical industry and the society at large. The body of knowledge on RDs has developed very slowly and is still largely an "uncharted territory". Based on the "Long Tail" theory [1], research on specific rare diseases through the application of social computing is worth - socially, clinically and economically. Cases examined preliminarily confirm our hypothesis. An international expert consultation will serve to systematise and validate our insights so far.

References:
1. Anderson, Chris. The Long Tail - Why the Future of Business is Selling Less of More. Hyperion, New York. 2006.
2. RDCRN - Rare Diseases Clinical Research Network. http://rarediseasesnetwork.epi.usf.edu/
3. Sauer I, Bialeck D, Efimova E, Schwartlander R, Pless G & Neuhaus P. "Blogs" and "Wikis" are valuable software tools for communication within research groups. Artificial Organs 29(1):82-89, Blackwell Publishing, Inc. 2005.
4. Singer, E. Social Networking Hits the Genome. http://www.technologyreview.com/Biotech /20464/ 
5. Waldrop, M. Science 2.0 - Is Open Access Science the Future? Scientific American Magazine - April 21, 2008. (Also available at http://www.sciam.com/article.cfm?id=science-2-point-0).

 The potential of social computing for biomedical research on rare diseases [5 Cr3 1330 Cabrera] View SlideShare presentation or Upload your own. (tags: medicine20 20 ) []

The potential of social computing for biomedical research on rare diseases

Information and Communication Technologies for Active Ageing: Opportunities and Challenges for the European Union

This report presents the major outcomes of a validation and policy options workshop on social computing, held at IPTS in Seville, on 26-27 February 2008. It points to a number of relevant issues (including methodological and conceptual ones) that need to be taken into account in a study of the socio-economic impacts of social computing. It argues that there is little room for direct policy interventions in social computing but that framework conditions and impacts at sector-level (e.g. education, government) need to be considered. The report also discusses the future of social computing and the opportunities it offers Europe. How to obtain EU publications Our priced publications are available from EU Bookshop (http://bookshop.europa.eu), where you can place an order with the sales agent of your choice. The Publications Office has a worldwide network of sales agents. You can obtain their contact details by sending a fax to (352) 29 29-42758. The mission of the JRC is to provide customer-driven scientific and technical support for the conception, development, implementation and monitoring of EU policies. As a service of the European Commission, the JRC functions as a reference centre o f science and technology for the Union. Close to the policy-making process, it serves the common interest of the Member States, while being independent of special interests, whether private or national. LF-N A -2531-E N -C

http://publications.jrc.ec.europa.eu/repository/bitstream/111111111/6788/1/jrc46544.pdf

Valverde Albacete Jose

Papers

The potential of social computing for biomedical research on rare diseases

Information and Communication Technologies for Active Ageing: Opportunities and Challenges for the European Union

The Socio-economic Impact of Social Computing: Proceedings of a Validation and Policy Options Workshop

ICT for Health: Social Computing