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1.  A Large-Scale Study of Anxiety and Depression in People with Multiple Sclerosis: A Survey via the Web Portal of the UK MS Register 
PLoS ONE  2012;7(7):e41910.
Introduction
Studies have found that people with Multiple Sclerosis experience relatively high rates of anxiety and depression. Although methodologically robust, many of these studies had access to only modest sample sizes (N<200). The aims of this study were to use responses gained via the web portal of the UK MS Register (N>4000) to: describe the depression and anxiety profiles of people with MS; to determine if anxiety and depression are related to age or disease duration; and to assess whether the levels of anxiety and depression differ between genders and types of MS.
Methods
From its launch in May 2011 to the end of December 2011, 7786 adults with MS enrolled to take part in the UK MS Register via the web portal. The responses to the Hospital Anxiety and Depression Scale (HADS) were collated with basic demographic and descriptive MS data provided at registration and the resulting dataset was analysed in SPSS (v.16).
Results
The mean HADS score among the 4178 respondents was 15.7 (SE 0.117, SD 7.55) with a median of 15.0 (IQR 11). Anxiety and depression rates were notably high, with over half (54.1%) scoring ≥8 for anxiety and 46.9% scoring ≥8 for depression. Women with relapsing-remitting MS were more anxious than men with this type (p<0.001), and than women with other types of MS (p = 0.017). Within each gender, men and women with secondary progressive MS were more depressed than men or women with other types of MS (p<0.001, p<0.001).
Conclusions
This largest known study of its kind has shown that anxiety and depression are highly prevalent in people with MS, indicating that their mental health needs could be better addressed. These findings support service planning and further research to provide the best care for people with MS to help alleviate these debilitating conditions.
doi:10.1371/journal.pone.0041910
PMCID: PMC3408498  PMID: 22860028
2.  How People with Multiple Sclerosis Rate Their Quality of Life: An EQ-5D Survey via the UK MS Register 
PLoS ONE  2013;8(6):e65640.
Introduction
The EQ-5D is a widely-used, standardised, quality of life measure producing health profiles, indices and states. The aims of this study were to assess the role of various factors in how people with Multiple Sclerosis rate their quality of life, based on responses to the EQ-5D received via the web portal of the UK MS Register.
Methods
The 4516 responses to the EQ-5D (between May 2011 and April 2012) were collated with basic demographic and descriptive MS data and the resulting dataset was analysed in SPSS (v.20).
Results
The mean health state for people with MS was 59.73 (SD 22.4, median 61), compared to the UK population mean of 82.48 (which is approximately 1SD above the cohort mean). The characteristics of respondents with high health states (at or above +1SD) were: better health profiles (most predictive dimension: Usual Activities), higher health indices, younger age, shorter durations of MS, female gender, relapsing-remitting MS, higher educational attainment and being in paid employment (all p-values<0.001). Conversely, the characteristics of respondents with low health states (at or below -1SD) were: poorer health profiles (most predictive dimension: Mobility), lower health indices, older age, longer durations of MS, male gender, progressive MS, lower educational attainment and having an employment status of sick/disabled (p = 0.0014 for age, all other p-values<0.001). Particular living arrangements were not associated with either the high or low health status groups.
Conclusions
This large-scale study has enabled in-depth analyses on how people with MS rate their quality of life, and it provides new knowledge on the various factors that contribute to their self-assessed health status. These findings demonstrate the impact of MS on quality of life, and they can be used to inform care provision and further research, to work towards enhancing the quality of life of people with MS.
doi:10.1371/journal.pone.0065640
PMCID: PMC3679154  PMID: 23776516
3.  Design and implementation of the first nationwide, web-based Chinese Renal Data System (CNRDS) 
Background
In April 2010, with an endorsement from the Ministry of Health of the People's Republic of China, the Chinese Society of Nephrology launched the first nationwide, web-based prospective renal data registration platform, the Chinese Renal Data System (CNRDS), to collect structured demographic, clinical, and laboratory data for dialysis cases, as well as to establish a kidney disease database for researchers and policy makers.
Methods
The CNRDS program uses information technology to facilitate healthcare professionals to create a blood purification registry and to deliver an evidence-based care and education protocol tailored to chronic kidney disease, as well as online forum for communication between nephrologists. The online portal https://www.cnrds.net is implemented as a Java web application using an Apache Tomcat web server and a MySQL database. All data are stored in a central databank to establish a Chinese renal database for research and publication purposes.
Results
Currently, over 270,000 clinical cases, including general patient information, diagnostics, therapies, medications, and laboratory tests, have been registered in CNRDS by 3,669 healthcare institutions qualified for hemodialysis therapy. At the 2011 annual blood purification forum of the Chinese Society of Nephrology, the CNRDS 2010 annual report was reviewed and accepted by the society members and government representatives.
Conclusions
CNRDS is the first national, web-based application for collecting and managing electronic medical records of patients with dialysis in China. It provides both an easily accessible platform for nephrologists to store and organize their patient data and acts as a communication platform among participating doctors. Moreover, it is the largest database for treatment and patient care of end-stage renal disease (ESRD) patients in China, which will be beneficial for scientific research and epidemiological investigations aimed at improving the quality of life of such patients. Furthermore, it is a model nationwide disease registry, which could potentially be used for other diseases.
doi:10.1186/1472-6947-12-11
PMCID: PMC3309940  PMID: 22369692
4.  One Size Does Not Fit All: Using Qualitative Methods to Inform the Development of an Internet Portal for Multiple Sclerosis Patients 
Disabled and elderly populations are the fastest growing segment of Internet usage. However, these people face an “Inverse Information law”- access to appropriate information is particularly difficult to those who need it the most. Our tertiary care Multiple Sclerosis (MS) center received funding to develop a MS specific patient portal linked to web messaging system so as to empower patients to become more active participants in their health care. In order to design an effective portal, we conducted a qualitative study using focus groups and direct observation techniques. The study explores the perceptions, expectations and interactions of MS patients with the portal and underscores the many challenges MS patients face in getting quality health information on the Internet. Many of the patient barriers were due to inappropriate font sizes, low contrast, cluttering of web page and use of dynamic and flashing objects. Some of these issues are not addressed by Section 508 accessibility guidelines. We believe that any future patient portal or health information web site needs to address these issues and educate the patients about accessibility options to enhance utilization and user satisfaction.
PMCID: PMC1560589  PMID: 16778993
5.  The Integrated Web Portal for Escalation with Overdose Control (EWOC) 
In this paper, we present the design and implementation of a novel web portal for the cancer phase I clinical trial design method Escalation with Overdose Control (EWOC). The web portal has two major components: a web-based dose finding calculator; and a standalone and downloadable dose finding software which can be installed on Windows operating systems. The web-based dose finding calculator uses industry standards and is a database-driven and distributed computing platform for designing and conducting dose finding in cancer phase I clinical trials utilizing EWOC methodology. The web portal is developed using open source software: PHP, JQuery, R and OpenBUGS. It supports any standard browsers with internet connection. The web portal can be accessed at: http://biostatistics.csmc.edu.
doi:10.2174/1874431120130427001
PMCID: PMC3706802  PMID: 23847696
EWOC; Bayesian method; cancer phase I clinical trial; maximum tolerated dose; open source.
6.  MetNet Online: a novel integrated resource for plant systems biology 
BMC Bioinformatics  2012;13:267.
Background
Plants are important as foods, pharmaceuticals, biorenewable chemicals, fuel resources, bioremediation tools and general tools for recombinant technology. The study of plant biological pathways is advanced by easy access to integrated data sources. Today, various plant data sources are scattered throughout the web, making it increasingly complicated to build comprehensive datasets.
Results
MetNet Online is a web-based portal that provides access to a regulatory and metabolic plant pathway database. The database and portal integrate Arabidopsis, soybean (Glycine max) and grapevine (Vitis vinifera) data. Pathways are enriched with known or predicted information on sub cellular location. MetNet Online enables pathways, interactions and entities to be browsed or searched by multiple categories such as sub cellular compartment, pathway ontology, and GO term. In addition to this, the “My MetNet” feature allows registered users to bookmark content and track, import and export customized lists of entities. Users can also construct custom networks using existing pathways and/or interactions as building blocks.
Conclusion
The site can be reached at http://www.metnetonline.org. Extensive video tutorials on how to use the site are available through http://www.metnetonline.org/tutorial/.
doi:10.1186/1471-2105-13-267
PMCID: PMC3483157  PMID: 23066841
7.  The Physical and Psychological Impact of Multiple Sclerosis Using the MSIS-29 via the Web Portal of the UK MS Register 
PLoS ONE  2013;8(1):e55422.
Introduction
The MSIS-29 was developed to assess the physical and psychological impact of MS. The aims of this study were to use the responses to the MSIS-29 via the web portal of the UK MS Register to: examine the internal properties of the scale delivered via the internet, profile the cohort, and assess how well the scale measures impact of disability on the potential workforce.
Methods
Between May 2011 and April 2012, 4558 people with MS completed the MSIS-29(v.1). The responses were collated with basic demographic and descriptive MS data and the resulting dataset was analysed in SPSS(v.20).
Results
Internal consistency was high (Cronbach's alpha 0.97 MSIS-29-PHYS, 0.92 MSIS-29-PSYCH). The mean MSIS-29-PHYS score was 60.5 (50.6%) with a median of 62 and the mean MSIS-29-PSYCH score was 24.8 (43.8%) with a median of 24. Physical scores increased with age and disease duration (p<0.001, p<0.001), but there was a weak negative relationship between psychological scores and age (p<0.001). The odds of people having an employment status of sick/disabled were 7.2 (CI 5.5, 9.4, p<0.001) for people with a moderate physical score, and 22.3 (CI 17.0, 29.3, p<0.001) for people with a high physical score (relative to having a low physical score).
Conclusions
This largest known study of its kind has demonstrated how the MSIS-29 can be administered via the internet to characterise a cohort, and to predict the likely impact of disability on taking an active part in the workforce, as a reasonable proxy for the effects of MS on general activities. The findings examining MSIS-29-PHYS and MSIS-29-PSYCH scores against age support the use of two sub-scales, not a combined score. These results underline the importance of using a scale such as this to monitor disability levels regularly in guiding MS care to enable people to be as active as possible.
doi:10.1371/journal.pone.0055422
PMCID: PMC3561202  PMID: 23383186
8.  Design and Implementation of a Portal for the Medical Equipment Market: MEDICOM 
Background
The MEDICOM (Medical Products Electronic Commerce) Portal provides the electronic means for medical-equipment manufacturers to communicate online with their customers while supporting the Purchasing Process and Post Market Surveillance. The Portal offers a powerful Internet-based search tool for finding medical products and manufacturers. Its main advantage is the fast, reliable and up-to-date retrieval of information while eliminating all unrelated content that a general-purpose search engine would retrieve. The Universal Medical Device Nomenclature System (UMDNS) registers all products. The Portal accepts end-user requests and generates a list of results containing text descriptions of devices, UMDNS attribute values, and links to manufacturer Web pages and online catalogues for access to more-detailed information. Device short descriptions are provided by the corresponding manufacturer. The Portal offers technical support for integration of the manufacturers' Web sites with itself. The network of the Portal and the connected manufacturers' sites is called the MEDICOM system.
Objective
To establish an environment hosting all the interactions of consumers (health care organizations and professionals) and providers (manufacturers, distributors, and resellers of medical devices).
Methods
The Portal provides the end-user interface, implements system management, and supports database compatibility. The Portal hosts information about the whole MEDICOM system (Common Database) and summarized descriptions of medical devices (Short Description Database); the manufacturers' servers present extended descriptions. The Portal provides end-user profiling and registration, an efficient product-searching mechanism, bulletin boards, links to on-line libraries and standards, on-line information for the MEDICOM system, and special messages or advertisements from manufacturers. Platform independence and interoperability characterize the system design. Relational Database Management Systems are used for the system's databases. The end-user interface is implemented using HTML, Javascript, Java applets, and XML documents. Communication between the Portal and the manufacturers' servers is implemented using a CORBA interface. Remote administration of the Portal is enabled by dynamically-generated HTML interfaces based on XML documents.
A representative group of users evaluated the system. The aim of the evaluation was validation of the usability of all of MEDICOM's functionality. The evaluation procedure was based on ISO/IEC 9126 Information technology - Software product evaluation - Quality characteristics and guidelines for their use.
Results
The overall user evaluation of the MEDICOM system was very positive. The MEDICOM system was characterized as an innovative concept that brings significant added value to medical-equipment commerce.
Conclusions
The eventual benefits of the MEDICOM system are (a) establishment of a worldwide-accessible marketplace between manufacturers and health care professionals that provides up-to-date and high-quality product information in an easy and friendly way and (b) enhancement of the efficiency of marketing procedures and after-sales support.
doi:10.2196/jmir.3.4.e32
PMCID: PMC1761912  PMID: 11772547
Electronic commerce, medical devices, equipment and supplies, Internet, CORBA, XML, RDBMS
9.  BioCatalogue: a universal catalogue of web services for the life sciences 
Nucleic Acids Research  2010;38(Web Server issue):W689-W694.
The use of Web Services to enable programmatic access to on-line bioinformatics is becoming increasingly important in the Life Sciences. However, their number, distribution and the variable quality of their documentation can make their discovery and subsequent use difficult. A Web Services registry with information on available services will help to bring together service providers and their users. The BioCatalogue (http://www.biocatalogue.org/) provides a common interface for registering, browsing and annotating Web Services to the Life Science community. Services in the BioCatalogue can be described and searched in multiple ways based upon their technical types, bioinformatics categories, user tags, service providers or data inputs and outputs. They are also subject to constant monitoring, allowing the identification of service problems and changes and the filtering-out of unavailable or unreliable resources. The system is accessible via a human-readable ‘Web 2.0’-style interface and a programmatic Web Service interface. The BioCatalogue follows a community approach in which all services can be registered, browsed and incrementally documented with annotations by any member of the scientific community.
doi:10.1093/nar/gkq394
PMCID: PMC2896129  PMID: 20484378
10.  Anamneses-Based Internet Information Supply: Can a Combination of an Expert System and Meta-Search Engine Help Consumers find the Health Information they Require? 
An increasing number of people search for health information online. During the last 10 years various researchers have determined the requirements for an ideal consumer health information system. The aim of this study was to figure out, whether medical laymen can find a more accurate diagnosis for a given anamnesis via the developed prototype health information system than via ordinary internet search.
In a randomized controlled trial, the prototype information system was evaluated by the assessment of two sample cases. Participants had to determine the diagnosis of a patient with a headache via information found searching the web. A patient’s history sheet and a computer with internet access were provided to the participants and they were guided through the study by an especially designed study website. The intervention group used the prototype information system; the control group used common search engines and portals. The numbers of correct diagnoses in each group were compared.
A total of 140 (60/80) participants took part in two study sections. In the first case, which determined a common diagnosis, both groups did equally well. In the second section, which determined a less common and more complex case, the intervention group did significantly better (P=0.031) due to the tailored information supply.
Using medical expert systems in combination with a portal searching meta-search engine represents a feasible strategy to provide reliable patient-tailored information and can ultimately contribute to patient safety with respect to information found via the internet.
doi:10.2174/1874431101004010012
PMCID: PMC2874219  PMID: 20502597
Information supply; internet; expert system; meta-search; tailoring; headaches.
11.  From design to implementation - The Joint Asia Diabetes Evaluation (JADE) program: A descriptive report of an electronic web-based diabetes management program 
Background
The Joint Asia Diabetes Evaluation (JADE) Program is a web-based program incorporating a comprehensive risk engine, care protocols, and clinical decision support to improve ambulatory diabetes care.
Methods
The JADE Program uses information technology to facilitate healthcare professionals to create a diabetes registry and to deliver an evidence-based care and education protocol tailored to patients' risk profiles. With written informed consent from participating patients and care providers, all data are anonymized and stored in a databank to establish an Asian Diabetes Database for research and publication purpose.
Results
The JADE electronic portal (e-portal: http://www.jade-adf.org) is implemented as a Java application using the Apache web server, the mySQL database and the Cocoon framework. The JADE e-portal comprises a risk engine which predicts 5-year probability of major clinical events based on parameters collected during an annual comprehensive assessment. Based on this risk stratification, the JADE e-portal recommends a care protocol tailored to these risk levels with decision support triggered by various risk factors. Apart from establishing a registry for quality assurance and data tracking, the JADE e-portal also displays trends of risk factor control at each visit to promote doctor-patient dialogues and to empower both parties to make informed decisions.
Conclusions
The JADE Program is a prototype using information technology to facilitate implementation of a comprehensive care model, as recommended by the International Diabetes Federation. It also enables health care teams to record, manage, track and analyze the clinical course and outcomes of people with diabetes.
doi:10.1186/1472-6947-10-26
PMCID: PMC2876072  PMID: 20465815
12.  The prevalence of multiple sclerosis in the Leeds Health Authority 
OBJECTIVES—To determine the prevalence of multiple sclerosis in the Leeds Health District.
METHODS—Multiple sources of case ascertainment were used—namely, neurology departments, hospital episode statistics, general practitioners, the Leeds branch of the Multiple Sclerosis Society, the West Yorkshire Multiple Sclerosis Therapy Centre, community physiotherapists and occupational therapists, the Leeds Wheelchair Centre, and the Young Disabled Unit. Data collection was from retrospective analysis of hospital and primary care case records. A population based incidence register was established by prospectively registering all new patients with diagnoses of multiple sclerosis.
RESULTS—On prevalence day, 30 April 1996, 712 people with multiple sclerosis were identified living in Leeds (population 732 061), giving a prevalence of 97/105. The prevalence for definite and probable multiple sclerosis was 84/105, and for suspected multiple sclerosis it was 13/105. The sex ratio of prevalent people with multiple sclerosis was 2.79 to 1 women to men. The mean age of prevalent cases was 51years, the mean age at symptom onset was 34 years, and the mean duration of disease was 16 years. Forty cases were prospectively reported as incident cases from 1 November 1995 to 1 February 1996.
CONCLUSIONS—The prevalence of multiple sclerosis in Leeds was found to be similar to that in the south of the United Kingdom but lower than that in Scotland. There is no evidence of a latitudinal gradient of increasing prevalence of multiple sclerosis from the south to the north of England.


PMCID: PMC2170076  PMID: 9598675
13.  TME9/379: Development of a WWW Clinical Booking Service 
Journal of Medical Internet Research  1999;1(Suppl 1):e116.
This application is a hybrid architecture that embeds a previous hospital booking procedure and allows to book visits and diagnostic examinations by remote people, general practitioners, clinical centers via an Internet connection. A PowerBuilder-based Web server has been developed to interface the procedure, in such a way as at any client request, the DDL functions are used through the web server, and at any reply of the Oracle database, a HTML string is generated that goes back to the client. To realize this project many tools have been used:
Internet Information Server - it is a set of applications using dynamic link libraries much faster than the standard CGI ones.
ASP (Active Server Pages) - this is a new Internet technology that allows to create fine Web pages, platform independent and usable by any browser.
The VBScript - this is an event-based language, useful to link code to a user interaction or to a system reply.
HTML - this language describes the structure of a document and defines a set of fixed stiles for the Web pages, and can be read by any editor.
PowerBuilder Enterprise- it is an object-oriented environment for the development of high-performance client/server and Internet applications on many different OSs.
SQL*Net - it is an Oracle product that optimizes the network management ensuring interoperability between different computers, OSs, and networks.
Oracle ODBC32 - it is a standard protocol to access information in SQL databases (Microsoft, Paradox, Oracle, etc.)
The developed software fully manages the hospital booking procedure and is included into the hospital network. In this way the Unique Booking Center can work both inside the hospital and from all over the country by means of a simple Internet connection.
doi:10.2196/jmir.1.suppl1.e116
PMCID: PMC1761722
Telemedicine; Radiology; Intranet; Internet; Images
14.  Association of fish consumption and omega 3 supplementation with quality of life, disability and disease activity in an international cohort of people with multiple sclerosis 
The role of fish consumption and omega 3 supplementation in multiple sclerosis (MS) is controversial, although there is some evidence to support a beneficial effect. We surveyed a large cohort of people with MS recruited via Web 2.0 platforms, requesting information on type of MS, relapse rates, disability, health-related quality of life, frequency of fish consumption and omega 3 supplementation, including type and dose, using validated tools where possible. We aimed to determine whether there was an association between fish consumption and omega 3 supplementation and quality of life, disability and disease activity for people with MS. Univariate and multivariate analyses were undertaken. Of 2469 respondents, 1493 (60.5%) had relapsing–remitting MS. Those consuming fish more frequently and those taking omega 3 supplements had significantly better quality of life, in all domains, and less disability. For fish consumption, there was a clear dose–response relationship for these associations. There were also trends towards lower relapse rates and reduced disease activity; flaxseed oil supplementation was associated with over 60% lower relapse rate over the previous 12 months. Further dietary studies and randomised controlled trials of omega 3 supplementation for people with MS are required, preferably using flaxseed oil.
doi:10.3109/00207454.2013.803104
PMCID: PMC3821380  PMID: 23713615
multiple sclerosis; MS; risk factors; prevention
15.  Quality criteria and access characteristics of Web sites: proposal for the design of a health Internet directory. 
The increasing volume of information available on the Internet today is a problem for health care professionals who want to access rapidly data of high quality. Usual search engines and directories are not sufficient to satisfy their needs. Moreover, the information published by Web sites is not always guaranteed. Some institutions around the word deal with the definition of a set of criteria for the evaluation of medical Web sites. We base our current work on the technologies we developed previously in order to integrate sources of information of various kinds using the "Unified Medical Language System" knowledge bases. This paper focuses on quality criteria and access characteristics Web sites should satisfy to be registered in a "Health Internet Directory". The design of such a system is proposed and discussed.
PMCID: PMC2232566  PMID: 10566475
16.  Multiple-Feature Extracting Modules Based Leak Mining System Design 
The Scientific World Journal  2013;2013:704865.
Over the years, human dependence on the Internet has increased dramatically. A large amount of information is placed on the Internet and retrieved from it daily, which makes web security in terms of online information a major concern. In recent years, the most problematic issues in web security have been e-mail address leakage and SQL injection attacks. There are many possible causes of information leakage, such as inadequate precautions during the programming process, which lead to the leakage of e-mail addresses entered online or insufficient protection of database information, a loophole that enables malicious users to steal online content. In this paper, we implement a crawler mining system that is equipped with SQL injection vulnerability detection, by means of an algorithm developed for the web crawler. In addition, we analyze portal sites of the governments of various countries or regions in order to investigate the information leaking status of each site. Subsequently, we analyze the database structure and content of each site, using the data collected. Thus, we make use of practical verification in order to focus on information security and privacy through black-box testing.
doi:10.1155/2013/704865
PMCID: PMC3878285  PMID: 24453892
17.  Virtual Visitation in the Neonatal Intensive Care: Experience with the Use of Internet and Telemedicine in a Tertiary Neonatal Unit 
The Permanente Journal  2011;15(3):32-36.
Introduction: Globally about 8% to 10% of newborns require neonatal intensive care (NICU) care. Families face emotional and financial difficulties when their sick newborns are hospitalized for prolonged periods in a NICU.
Methods: We conducted a study to assess the feasibility and acceptance of an Internet-based telemedicine program in an intensive care setting and to evaluate its impact on newborns' length of stay (LOS) in hospitals. We identified eligible newborns and obtained their parents' written consent before installing a Web camera by the babies' beds. Using child-specific, confidential passwords, families viewed real-time video images of their newborns through a secure portal via an Internet browser or 3G (third-generation) cell phone. Parents of study subjects completed a survey that detailed the performance of the system. Frequency of parental visits and LOS of babies were tracked and compared with the same data for similar high-risk newborns matched for gestation and birth weight.
Results: Parents responded favorably to the stability of the system and clarity of the image. Eighty percent requested a larger image frame. Frequencies of hospital visits made by parents of newborns in the study group and of those made by parents in the control group were not statistically different. LOS and postmenstrual age on discharge of study infants were not statistically different compared with infants in the control group.
Conclusion: Virtual visitation is well accepted by families with sick newborns requiring prolonged hospitalization. Inclusion of information technology to optimize NICU visitation resulted in no significant decrease in duration of hospitalization; however, its role in improving post-discharge transition care must be evaluated further.
PMCID: PMC3200097  PMID: 22058667
18.  Use of a Web Portal for Support and Research After a Disaster: Opportunities and Lessons Learned 
Background
In this report we describe the development and use of a web portal in the aftermath of the 2004 tsunami. This large scale disaster confronted many displaced people with death, despair and need for information and support. Awareness and insight in the emotional impact of disasters can provide opportunities for surveillance and early treatment. Moreover, online support systems can contribute to community building, empowerment of victims and resilience.
Objective
We evaluate the development and use of a multilingual web portal that combined a platform for information, emotional support, self assessment and referral with research opportunities. The rapid development, use, advantages, difficulties and learning points are discussed.
Methods
A multidisciplinary working group from the University Medical Centre Utrecht, the Major Incident Hospital and the Central Military Hospital developed a web portal for tsunami victims. The webportal combined: (1) a forum aimed at community building, (2) self assessment tools that in the same time function as a reseach survey, (3) e-consultation, and (4) an information portal.
Results
Within 3 weeks after the tsunami, the working group launched an open, online service (www.TISEI.org. Tsunami Intrenational Survey on Emotional Impact) to foster community) support in the aftermath of the disaster. It combined four functionalities that were earlier previously only used separately. The portal had over 36.800 unique visitors in the first two years. At least 31% (144/464) percent of the Dutch surviving victims could be reached for a survey through the site. The TISEI-environment was available in 15 languages and visitors came from all over the world. Ninety-five percent of all visitors came from Europe or the United States. Subsequent to immediate disaster support, the web portal also served as a memorial archive for anniversary meetings and follow-up incentives. Difficulties we experienced were lack of funding, time pressure, victim-anonymisation, international collaboration and long term maintenance.
Conclusions
A multilingual website with combined modalities for emotional care and research after a natural disaster proved feasible. Web based services like www.TISEI.org in the aftermath of mass disasters can help community building and deliver low level, patient centred and easily accessible information and care. A multilingual website with combined modalities for emotional care and research after a natural disaster proved feasible. Growing Internet penetration world wide and especially the rapid expansion and influence of online communities enables delivery of care and perform research with the internetInternet as a platform. The unpredictable nature of disaster does put time pressure on the development of online solutions and influenced the yield of our site. This highlights the necessity of developing methods and (inter) national collaborations in advance, secure funding, and learn from earlier initiatives.
doi:10.2196/ijmr.1588
PMCID: PMC3626128  PMID: 23612349
Disaster medicine; Stress Disorders; Post-Traumatic; Internet; mental health; health surveys; stress, psychological; Online Systems; Self-Help groups
19.  Internet Protocol Television for Personalized Home-Based Health Information: Design-Based Research on a Diabetes Education System 
JMIR Research Protocols  2014;3(1):e13.
Background
The use of Internet protocol television (IPTV) as a channel for consumer health information is a relatively under-explored area of medical Internet research. IPTV may afford new opportunities for health care service providers to provide health information and for consumers, patients, and caretakers to access health information. The technologies of Web 2.0 add a new and even less explored dimension to IPTV’s potential.
Objective
Our research explored an application of Web 2.0 integrated with IPTV for personalized home-based health information in diabetes education, particularly for people with diabetes who are not strong computer and Internet users, and thus may miss out on Web-based resources. We wanted to establish whether this system could enable diabetes educators to deliver personalized health information directly to people with diabetes in their homes; and whether this system could encourage people with diabetes who make little use of Web-based health information to build their health literacy via the interface of a home television screen and remote control.
Methods
This project was undertaken as design-based research in two stages. Stage 1 comprised a feasibility study into the technical work required to integrate an existing Web 2.0 platform with an existing IPTV system, populated with content and implemented for user trials in a laboratory setting. Stage 2 comprised an evaluation of the system by consumers and providers of diabetes information.
Results
The project succeeded in developing a Web 2.0 IPTV system for people with diabetes and low literacies and their diabetes educators. The performance of the system in the laboratory setting gave them the confidence to engage seriously in thinking about the actual and potential features and benefits of a more widely-implemented system. In their feedback they pointed out a range of critical usability and usefulness issues related to Web 2.0 affordances and learning fundamentals. They also described their experiences with the system in terms that bode well for its educational potential, and they suggested many constructive improvements to the system.
Conclusions
The integration of Web 2.0 and IPTV merits further technical development, business modeling, and health services and health outcomes research, as a solution to extend the reach and scale of home-based health care.
doi:10.2196/resprot.3201
PMCID: PMC3967124  PMID: 24613862
consumer health information; diabetes mellitus; health literacy; Internet; IPTV; patient education; social media; telemedicine; television; Web applications
20.  Feasibility of a Personal Health Technology-Based Psychological Intervention for Men with Stress and Mood Problems: Randomized Controlled Pilot Trial 
JMIR Research Protocols  2013;2(1):e1.
Background
Work-related stress is a significant problem for both people and organizations. It may lead to mental illnesses such as anxiety and depression, resulting in increased work absences and disabilities. Scalable interventions to prevent and manage harmful stress can be delivered with the help of technology tools to support self-observations and skills training.
Objective
The aim of this study was to assess the feasibility of the P4Well intervention in treatment of stress-related psychological problems. P4Well is a novel intervention which combines modern psychotherapy (the cognitive behavioral therapy and the acceptance and commitment therapy) with personal health technologies to deliver the intervention via multiple channels, includinggroup meetings, Internet/Web portal, mobile phone applications, and personal monitoring devices.
Methods
This pilot study design was a small-scale randomized controlled trial that compared the P4Well intervention with a waiting list control group. In addition to personal health technologies for self-assessment, the intervention consisted of 3 psychologist-assisted group meetings. Self-assessed psychological measures through questionnaires were collected offline pre- and post-intervention, and 6 months after the intervention for the intervention group. Acceptance and usage of technology tools were measured with user experience questionnaires and usage logs.
Results
A total of 24 subjects were randomized: 11 participants were followed up in the intervention group (1 was lost to follow-up) and 12 participants did not receive any intervention (control group). Depressive and psychological symptoms decreased and self-rated health and working ability increased. All participants reported they had benefited from the intervention. All technology tools had active users and 10/11 participants used at least 1 tool actively. Physiological measurements with personal feedback were considered the most useful intervention component.
Conclusions
Our results confirm the feasibility of the intervention and suggest that it had positive effects on psychological symptoms, self-rated health, and self-rated working ability. The intervention seemed to have a positive impact on certain aspects of burnout and job strain, such as cynicism and over-commitment. Future studies need to investigate the effectiveness, benefits, and possible problems of psychological interventions which incorporate new technologies.
Trial Registration
The Finnish Funding Agency for Technology and Innovation (TEKES), Project number 40011/08
doi:10.2196/resprot.2389
PMCID: PMC3628150  PMID: 23611946
stress; technology-supported mini-intervention; personal health technologies; cognitive behaviour therapy; acceptance and commitment therapy; mhealth; mobile health; smartphone; Internet
21.  Screening for Chronic Conditions Using a Patient Internet Portal: Recruitment for an Internet-based Primary Care Intervention 
Background
Patient Internet portals have created new opportunities for assessment and management of chronic conditions.
Objective
To conduct an online screening survey for a study recruitment using a secure patient Internet portal to identify primary care patients with untreated depression, chronic pain, or mobility difficulty before nonurgent office visits.
Design
Internet-based screening survey for a randomized trial.
Participants
Patients who were registered portal users who had scheduled primary care appointments.
Approach
Electronic study invitations via the portal were sent to 4,047 patients with scheduled visits to 34 primary care physicians participating in the study. After clicking on a link in the study invitation, patients were consecutively shown the study description, consent form, and lastly, the screening survey to determine final eligibility for study participation.
Results
Of the 2,113 (52%) patients who opened the study invitation, 1,001 consented online to join the study and 981 (98%) of these completed the screening survey. Of the respondents, 319 (33%) screened positive for 1 or more of the 3 conditions.
Conclusions
The online screening survey conducted through the patient portal was effective in identifying patients with chronic conditions in advance of scheduled primary care visits for participation in an intervention study.
doi:10.1007/s11606-007-0443-6
PMCID: PMC2359520  PMID: 18373147
internet; ambulatory care; pain; screening; mobility
22.  The Nightingale study: rationale, study design and baseline characteristics of a prospective cohort study on shift work and breast cancer risk among nurses 
BMC Cancer  2014;14:47.
Background
Evidence for the carcinogenicity of shift work in humans is limited because of significant heterogeneity of the results, thus more in-depth research in needed. The Nightingale Study is a nationwide prospective cohort study on occupational exposures and risks of chronic diseases among female nurses and focuses on the potential association between shift work and risk of breast cancer. The study design, methods, and baseline characteristics of the cohort are described.
Methods/Design
The source population for the cohort comprised 18 to 65 year old women who were registered as having completed training to be a nurse in the nationwide register for healthcare professionals in the Netherlands. Eligible women were invited to complete a web-based questionnaire including full job history, a detailed section on all domains of shift work (shift system, cumulative exposure, and shift intensity) and potential confounding factors, and an informed consent form for linkage with national (disease) registries. Women were also asked to donate toenail clippings as a source of DNA for genetic analyses. Between October 6, 2011 and February 1, 2012, 31% of the 192,931 women who were invited to participate completed the questionnaire, yielding a sample size of 59,947 cohort members. The mean age of the participants was 46.9 year (standard deviation 11.0 years). Toenail clippings were provided by 23,439 participants (39%).
Discussion
Results from the Nightingale Study will contribute to the scientific evidence of potential shift work-related health risks among nurses and will help develop preventive measures and policy aimed at reducing these risks.
doi:10.1186/1471-2407-14-47
PMCID: PMC3946235  PMID: 24475944
Shift work; Night work; Occupational exposures; Breast cancer; Chronic disease; Nurses
23.  Rationale and methods of the cardiometabolic valencian study (escarval-risk) for validation of risk scales in mediterranean patients with hypertension, diabetes or dyslipidemia 
BMC Public Health  2010;10:717.
Background
The Escarval-Risk study aims to validate cardiovascular risk scales in patients with hypertension, diabetes or dyslipidemia living in the Valencia Community, a European Mediterranean region, based on data from an electronic health recording system comparing predicted events with observed during 5 years follow-up study.
Methods/Design
A cohort prospective 5 years follow-up study has been designed including 25000 patients with hypertension, diabetes and/or dyslipidemia attended in usual clinical practice. All information is registered in a unique electronic health recording system (ABUCASIS) that is the usual way to register clinical practice in the Valencian Health System (primary and secondary care). The system covers about 95% of population (near 5 million people). The system is linked with database of mortality register, hospital withdrawals, prescriptions and assurance databases in which each individual have a unique identification number. Diagnoses in clinical practice are always registered based on IDC-9. Occurrence of CV disease was the main outcomes of interest. Risk survival analysis methods will be applied to estimate the cumulative incidence of developing CV events over time.
Discussion
The Escarval-Risk study will provide information to validate different cardiovascular risk scales in patients with hypertension, diabetes or dyslipidemia from a low risk Mediterranean Region, the Valencia Community.
doi:10.1186/1471-2458-10-717
PMCID: PMC3002332  PMID: 21092179
24.  ESTERR-PRO: A Setup Verification Software System Using Electronic Portal Imaging 
The purpose of the paper is to present and evaluate the performance of a new software-based registration system for patient setup verification, during radiotherapy, using electronic portal images. The estimation of setup errors, using the proposed system, can be accomplished by means of two alternate registration methods. (a) The portal image of the current fraction of the treatment is registered directly with the reference image (digitally reconstructed radiograph (DRR) or simulator image) using a modified manual technique. (b) The portal image of the current fraction of the treatment is registered with the portal image of the first fraction of the treatment (reference portal image) by applying a nearly automated technique based on self-organizing maps, whereas the reference portal has already been registered with a DRR or a simulator image. The proposed system was tested on phantom data and on data from six patients. The root mean square error (RMSE) of the setup estimates was 0.8 ± 0.3 (mean value ± standard deviation) for the phantom data and 0.3 ± 0.3 for the patient data, respectively, by applying the two methodologies. Furthermore, statistical analysis by means of the Wilcoxon nonparametric signed test showed that the results that were obtained by the two methods did not differ significantly (P value > 0.05).
doi:10.1155/2007/61523
PMCID: PMC1987368  PMID: 18521182
25.  Implementing Patient Access to Electronic Health Records Under HIPAA: Lessons Learned 
In 2001, the Institute of Medicine (IOM) and the Health Insurance Portability and Accountability Act (HIPAA) emphasized the need for patients to have greater control over their health information. We describe a Boston healthcare system's approach to providing patients access to their electronic health records (EHRs) via Patient Gateway, a secure, Web-based portal.
Implemented in 19 clinic sites to date, Patient Gateway allows patients to access information from their medical charts via the Internet in a secure manner.
Since 2002, over 19,000 patients have enrolled in Patient Gateway, more than 125,000 patients have logged into the system, and over 37,000 messages have been sent by patients to their practices. There have been no major security concerns.
By providing access to EHR data, secure systems like Patient Gateway allow patients a greater role in their healthcare process, as envisioned by the IOM and HIPAA.
PMCID: PMC2047325  PMID: 18066391

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