Using intervention mapping to develop a community garden program at the women's home

This culminating experience was a practice based intervention conducted by an organization, utilizing an intervention mapping approach for the program planning. It took place summer 2010 through spring 2011 and included incorporating a community garden into the Gusto wellness program at The Women's Home. This organization offers long-term residential care, and therapeutic services. Literature relating to community gardens and nutrition behavior change was reviewed. Short-term objectives included: 1) Conducting a needs assessment using focus groups, 2) Designing gardening program components based on intervention mapping guidelines, 3) Constructing a garden bed at Midtown Community Garden for use of The Women's Home, 4) Planning and implementing gardening education, and 5) Assessing feasibility of the garden program. The target population included 24 residents living at the residential dormitory of The Women's Home at the time of this project. The major variables are intervention mapping constructs including: 1) Needs assessment, 2) Preparing matrices of change objectives, 3) Selecting theory-informed intervention methods and practical strategies, 4) Producing program components and materials, 5) Planning program adoption, implementation, and sustainability, and 6) Planning for evaluation. The specific focus was lack of access to fresh fruits and vegetables (FV) for this population. Focus group responses revealed interest in community garden participation. Matrices of change were developed for lack of FV access based on performance objectives for behavioral and environmental factors and related determinants and theory. Methods and strategies were developed to implement a community garden and encourage participation. Program components included initiating a garden club, networking activities, creating gardening curriculum, and participating at Midtown Community Garden. Adoption and implementation performance objectives were outlined, and many were carried out. Evaluation questions were designed and outcomes of the garden project were discussed. ^ Outcomes of the project included exposure of garden topics and activities for The Women's Home residents, focus group responses revealing an interest in gardening among this population, gardening program components designed based on intervention mapping steps, and a constructed garden bed that was used for planting vegetables and flowers through fall 2010. Limited resources and budget along with a lack of a residential coordinator at The Women's Home were the main limiting factors for this project. Future garden projects can be developed using the intervention mapping process.^

The Need for School-Based Teen Dating Violence Prevention

Schools have several competing demands, and often suffer from inefficient access to needed resources. Thus, the addition of any program into an already overtaxed school system must be met with convincing evidence that 1) a need or problem exists and is relevant to the education of students, 2) the problem is amenable to change, and 3) addressing the problem is in the best interest of educators and students. The purpose of the present paper is to present a case for inclusion of teen dating violence prevention programs in middle and high schools. We also discuss a recent survey of 219 employees of a suburban school district in southeast Texas. Specifically, we examined their perceived need for and appropriateness of a school-based dating violence prevention program. The anonymous internet-based survey revealed that a majority of participants believed that teen dating violence was a problem, 19% reported having observed an instance of teen dating violence, and 82% believed school to be an appropriate outlet for the implementation of a dating violence prevention program.

Solución para la delegación de identidad en Sistemas de Gestión de Identidad paneuropeos basada en infraestructuras de certificación y lenguajes formales de asertos de seguridad

La estrategia i2010 de la UE tiene como objetivo garantizar el liderazgo europeo en materia de TIC y poner los beneficios de la Sociedad de la Información al servicio de la economía, la sociedad y la calidad de vida personal, teniendo presente que los éxitos de Europa hasta la fecha se han basado en favorecer la competencia leal en los mercados de las telecomunicaciones y crear un mercado sin fronteras para contenidos y medios de comunicación digitales. En esta línea, la Comisión Europea ha establecido que los distintos estados miembros deben contribuir activamente al desarrollo y uso seguro de los servicios telemáticos entre sus ciudadanos. Más concretamente, atribuye a las Administraciones Públicas, tanto a nivel nacional, regional como local, un papel dinamizador de la Sociedad de la Información que les obliga a ofrecer paulatinamente todos los actos administrativos a los ciudadanos a través de Internet. Como primer paso para el uso seguro de los servicios telemáticos que ofrecen las instituciones públicas se hace preciso dotar a los ciudadanos de una identidad digital que les permita identificarse ante un Proveedor de Servicio o ante otros ciudadanos de manera inequívoca. Por esta razón, la mayoría de países europeos – y otros en el resto del mundo – están promoviendo, sistemas fiables de gestión de identidad electrónica (eIDM), de tal manera que los ciudadanos, las empresas y departamentos gubernamentales (incluso en Estados miembros diferentes) pueden identificar y certificar sus operaciones con precisión, rapidez y sencillez. Sin embargo, la gestión de esta identidad por las Administraciones Públicas supone un importante desafío, acentuado cuando se hace necesaria la interoperabilidad entre Administraciones de diferentes países, puesto que personas y entidades tienen credenciales de identificación diferentes en función de su propio marco jurídico nacional. Consciente del problema, en la Unión Europea se han puesto en marcha una serie de proyectos con el objetivo de conseguir la interoperabilidad de los eIDMs entre las instituciones públicas de diferentes Estados miembros. A pesar de ello, las soluciones adoptadas hasta la fecha son insuficientes porque no prevén todos los posibles casos de interacción del usuario con las instituciones. En concreto, no tienen en cuenta un aspecto muy importante que se ofrece en los distintos sistemas jurídicos nacionales, a saber, la delegación de la identidad, mediante la cual un ciudadano puede autorizar a otro para que actúe en su nombre para acceder a determinados servicios prestados por las instituciones públicas. En esta tesis se realizan un conjunto de aportaciones que dan solución a distintos aspectos de los problemas planteados y que, de forma conjunta, permiten la interoperabilidad y la delegación de identidad en determinados Sistemas de Gestión de Identidad aplicados al entorno de las Administraciones Públicas. En el caso de la delegación, se ha definido un sistema de delegación dinámica de identidad entre dos entidades genéricas que permite solucionar el problema del acceso delegado a los servicios telemáticos ofrecidos por las Administraciones Públicas. La solución propuesta se basa en la generación de un token de delegación, constituido a partir de un Certificado Proxy, que permite a la entidad que delega establecer la delegación de identidad en otra entidad en base a un subconjunto de sus atributos como delegador, estableciendo además, en el propio token de delegación, restricciones en el conjunto de servicios accesibles a la entidad delegada y el tiempo de validez de la delegación. Adicionalmente, se presentan los mecanismos necesarios tanto para poder revocar un token de delegación como para comprobar sin un token de delegación ha sido o no revocado. Para ello se propone una solución para la identificación unívoca de tokens de delegación y la creación de una nueva entidad denominada Autoridad de Revocación de Tokens de Delegación. Entre las características del sistema de delegación propuesto destaca el que es lo suficientemente seguro como para ser utilizado en el entorno de la Administración Pública, que no requiere el uso de mecanismos off‐line para la generación de la delegación y que se puede realizar la delegación de forma instantánea y sin la necesidad de trámites complejos o la participación de un elevado número de entidades. Adicionalmente, el token de delegación propuesto es perfectamente integrable en las infraestructura de clave pública actual lo que hace que, dado que gran parte de las Administraciones Públicas europeas basan sus sistemas de identidad digital en el uso de la PKI y certificados de identidad X.509, la solución pueda ser puesta en marcha en un entorno real sin necesidad de grandes cambios o modificaciones de comportamiento. En lo referente a la interoperabilidad, se realiza un análisis exhaustivo y la correspondiente evaluación de las principales propuestas de Sistemas de Gestión de Identidad orientados a conseguir la interoperabilidad realizadas hasta la fecha en el marco de la Unión Europea y se propone, a alto nivel, una arquitectura de interoperabilidad para la gestión de identidad en las Administraciones Públicas. Dicha arquitectura es lo suficientemente genérica como para poder ser aplicada tanto en el entorno pan‐Europeo como en los entornos nacionales, autonómicos y locales, de tal forma que la interoperabilidad en la gestión de la identidad esté garantizada en todos los niveles de la Administración Pública. Por último, mediante la integración de la solución de delegación dinámica de identidad y la arquitectura de interoperabilidad propuestas se presenta una solución al problema de la delegación en un escenario pan‐Europeo de gestión de identidad, dando lugar a una arquitectura global de interoperabilidad pan‐Europea con soporte a la delegación de identidad. SUMMARY The i2010 European Union Plan aims to ensure European leadership in ICT and to promote the positive contribution that information and communication technologies can make to the economic, social and personal quality of life, bearing in mind that, to date, success in Europe has been based on promoting fair competition in telecommunications markets and on creating a borderless market for contents and digital media. In this line, the European Commission has established that the different member states should contribute actively to the development and secure use of telematic services among their citizens. More specifically, it is attributed to national, regional and local Public Administrations to have a supportive role of the Information Society, requiring them to gradually provide the citizens with Internet‐based access to all administrative procedures acts. As a first step for the secure use of telematic services offered by public institutions, it is necessary to provide the citizens with a digital identity to enable them to identify themselves unequivocally to a Service Provider or to other citizens. For this reason, most European countries ‐ and others in the rest of the world ‐ are promoting reliable systems for managing electronic identity (eIDM), so that citizens, businesses and government departments (even in different Member States) can identify and certify their operations with precision, speed and simplicity. However, the identity management by Public Administrations is a major challenge that becomes more difficult when interoperability between administrations of different countries is needed, due to the fact that individuals and entities have different identification credentials according to their own national legal framework. Aware of the problem, the European Union has launched a series of projects with the aim of achieving interoperability of eIDMs between public institutions of different Member States. However, the solutions adopted to date are insufficient because they do not foresee all possible cases of user interaction with the institutions. In particular, solutions do not take into account a very important aspect that is offered in different national legal systems, namely, the delegation of identity, by which a citizen can authorize another to act on his/her behalf to access certain services provided by public institutions. In this thesis a collection of contributions that provide solution to different aspects of the aforementioned problems are carried out. The solutions, in global, enable interoperability and identity delegation in some of the Identity Management Systems applied to Public Administration environment. In the case of delegation, a dynamic identity delegation system between generic entities is defined. This system makes it possible to solve the problem of delegated access to telematic services offered by Public Administrations. The proposed solution is based on the generation of a piece of information called delegation token. This delegation token, derived from a Proxy Certificate, allows the establishment of identity delegation by an entity that delegates (delegator) in other entity (delegatee) making use of a subset of delegator attributes. It also establishes restrictions on services that can be used by the delegated entity and the expiry date of delegation. In addition to this, the mechanisms necessary to revoke and check the revocation status of a delegation token are presented. To do this, a solution to univocally identify delegation tokens and the creation of a completely new entity, called Token Delegation Revocation Authority, are proposed. The most remarkable characteristics of the proposed delegation system are its security, enough for it to be used in the Public Administration environment, the fact that it does not require off‐line processes in order to generate the delegation, and the possibility of performing the delegation instantaneously and without neither complex processes nor the intervention of a large number of entities. The proposed delegation token can be completely incorporated into current Public Key Infrastructure (PKI). Thus, since most of the European Public Administrations base their digital identity systems on PKI and X.509 identity certificates, the solution can be adopted in a real environment without great changes or performance modifications. Regarding interoperability, an exhaustive analysis and evaluation of most significant proposals on Identity Management Systems that aim to achieve interoperability carried out in the European Union framework until now are performed. A high level identity management interoperability architecture for Public Administrations is also proposed. This architecture is sufficiently generic to be applied to both pan‐European environment and national, regional or local environments, thus interoperability in identity management at all Public Administration levels is guaranteed. Finally, through the integration of the proposed dynamic identity delegation solution and the high level interoperability architecture, a solution to the problem of identity delegation in a pan‐European identity management environment is suggested, leading to a pan‐European global interoperability architecture with identity delegation support.

HELPING YOUTH WITH AUTISM SPECTRUM DISORDER DEVELOP SOCIAL COMPETENCE IN COMMUNITY-BASED SETTINGS

The purpose of the current dissertation is to identify the features of effective interventions by exploring the experiences of youth with ASD who participate in such interventions, through two intervention studies (Studies 1 and 2) and one interview study (Study 3). Studies 1 and 2 were designed to support the development of social competence of youth with ASD through Structured Play with LEGO TM (Study 1, 12 youths with ASD, ages 7–12) and Minecraft TM (Study 2, 4 youths with ASD, ages 11–13). Over the course of the sessions, the play of the youth developed from parallel play (children playing alone, without interacting) to co-operative play (playing together with shared objectives). The results of Study 2 showed that rates of initiations and levels of engagement increased from the first session to the final session. In Study 3, 12 youths with ASD (ages 10–14) and at least one of their parents were interviewed to explore what children and their parents want from programs designed to improve social competence, which activities and practices were perceived to promote social competence by the participants, and which factors affected their decisions regarding these programs. The adolescents and parents looked for programs that supported social development and emotional wellbeing, but did not always have access to the programs they would have preferred, with factors such as cost and location reducing their options. Three overarching themes emerged through analysis of the three studies: (a) interests of the youth; (b) structure, both through interactions and instruction; and (c) naturalistic settings. Adolescents generally engage more willingly in interventions that incorporate their interests, such as play with Minecraft TM in Study 2. Additionally, Structured Play and structured instruction were crucial components of providing safe and supportive contexts for the development of social competence. Finally, skills learned in naturalistic settings tend to be applied more successfully in everyday situations. The themes are analysed through the lens of Vygotsky’s (1978) perspectives on learning, play, and development. Implications of the results for practitioners and researchers are discussed.

Factors to consider in Micronesian food-based interventions: a case study of preventing Vitamin A deficiency

Background: Many factors need to be considered in a food-based intervention. Vitamin A deficiency and chronic diseases, such as diabetes, heart disease and cancer, have become serious problems in the Federated States of Micronesia (FSM) following the decreased production and consumption of locally grown foods. However, agricultural and social conditions are still favourable for local food production. Aim: To identify key factors to consider in a Micronesian food-based intervention focusing on increased production and consumption of four major Micronesian staple foods: banana, breadfruit, giant swamp taro and pandanus. Methods: Ethnographic methods including key informant interviews and a literature review. Results: Pacific and Micronesian values, concepts of food and disease, and food classifications differ sharply from Western concepts. There are few FSM professionals with nutrition expertise. Traditional foods and food cultivars vary in nutrient content, consumption level, cost, availability, status, convenience in growing, storing and cooking, and organoleptic factors. Conclusions: A systematic consideration of the factors that relate to a food-based intervention is critical to its success. The evaluation of which food and cultivar of that food that might be most effectively promoted is also critical. Regional differences, for example FSM inter-island differences between the staple foods and cultivars, must be considered carefully. The evaluation framework presented here may be relevant to Pacific island and other countries with similar foods where food-based interventions are being planned. An ethnographic approach was found to be essential in understanding the cultural context and in data collection and analysis.

Community-based programmes to prevent pedestrian injuries in children 0-14 years: A systematic review

Community-based models for injury prevention have become an accepted part of the overall injury control strategy. This systematic review of the scientific literature examines the evidence for their effectiveness in reducing pedestrian injury in children 0-14 years of age. A comprehensive search of the literature was performed using the following study selection criteria: community-based intervention study; target population was children under 14 years; outcome measure is either pedestrian injury rates or observed child pedestrian or vehicle driver behaviour; and use of a community control or an historical control in the study design. Quality assessment and data abstraction was guided by a standardized procedure and performed independently by two authors. Data synthesis was in tabular and text form with meta-analysis not being possible due to the discrepancy in methods and measures between the studies.

Community-based interventions for the prevention of burns and scalds in children

Background Burns and scalds are a significant cause of morbidity and mortality in children. Successful counter-measures to prevent burn and scald-related injury have been identified. However, evidence indicating the successful roll-out of these counter-measures into the wider community is lacking. Community-based interventions in the form of multi-strategy, multi-focused programmes are hypothesised to result in a reduction in population-wide injury rates. This review tests this hypothesis with regards to burn and scald injury in children. Objectives To assess the effects of community-based interventions, defined as coordinated, multi-strategy initiatives, for reducing burns and scalds in children aged 14 years and under. Search strategy We searched the Cochrane Injuries Group's specialised register, CENTRAL, MEDLINE, EMBASE, CINAHL, PsycINFO, National Research Register and the Web of Knowledge. We also handsearched selected journals and checked the reference lists of selected publications. The searches were last updated in May 2007. Selection criteria Included studies were those that reported changes in medically attended burn and scald-related injury rates in a paediatric population (aged 14 years and under), following the implementation of a controlled community-based intervention. Data collection and analysis Two authors independently assess studies for eligibility and extracted data. Due to heterogeneity between the included studies, a pooled analysis was not appropriate. Main results Of 39 identified studies, four met the criteria for inclusion. Two of the included studies reported a significant decrease in paediatric burn and scald injury in the intervention compared with the control communities. The failure of the other two studies to show a positive result may have been due to limited time-frame for the intervention and/or failure to adequately implement the counter-measures in the communities. Authors' conclusions There are a very limited number of research studies allowing conclusions to be drawn about the effectiveness of community-based injury prevention programmes to prevent burns and scalds in children. There is a pressing need to evaluate high-quality community-based intervention programmes based on efficacious counter-measures to reduce burns and scalds in children. It is important that a framework for considering the problem of burns and scalds in children from a prevention perspective be articulated, and that an evidence-based suite of interventions be combined to create programme guidelines suitable for implementation in communities throughout the world.

Community-based programmes to prevent falls in children: A systematic review

Objective: We systematically reviewed the literature to examine the evidence for the effectiveness of community-based interventions to reduce fall-related injury in children aged 0-16 years. Methods: We performed a comprehensive search of the literature using the following study selection criteria: community-based intervention study; target population was children aged 0-16 years; outcome measure was fall-related injury rates; and either a community control or historical control was used in the study design. Quality assessment and data abstraction were guided by a standardized procedure and performed independently by two authors. Results: Only six studies fitting the inclusion criteria were identified in our search and only two of these used a trial design with a contemporary community control. Neither of the high quality evaluation studies showed an effect from the intervention and while authors of the remaining studies reported effective falls prevention programmes, the pre- and post-intervention design, uncontrolled for background secular trends, makes causal inferences from these studies difficult. Conclusion: There is a paucity of research studies from which evidence regarding the effectiveness of community-based intervention programmes for the prevention of fall-related injury in children could be based.

A distributed systems approach to secure Internet mail

One of the obstacles to improved security of the Internet is ad hoc development of technologies with different design goals and different security goals. This paper proposes reconceptualizing the Internet as a secure distributed system, focusing specifically on the application layer. The notion is to redesign specific functionality, based on principles discovered in research on distributed systems in the decades since the initial development of the Internet. Because of the problems in retrofitting new technology across millions of clients and servers, any options with prospects of success must support backward compatibility. This paper outlines a possible new architecture for internet-based mail which would replace existing protocols by a more secure framework. To maintain backward compatibility, initial implementation could offer a web browser-based front end but the longer-term approach would be to implement the system using appropriate models of replication. (C) 2005 Elsevier Ltd. All rights reserved.

Community-based programs to promote care seat restraints in children 0-16 years - A systematic review

Study Objective: Community-based models for injury prevention have become an accepted part of the overall injury control strategy. This systematic review of the scientific literature examines the evidence for their effectiveness in reducing injury due to inadequate car seat restraint use in children 0-16 years of age. Methods: A comprehensive search of the literature was performed using the following study selection criteria: community-based intervention study: target population was children aged 0-16 years of age; outcome measure was either injury rates due to motor vehicle crashes or observed changes in child restraint use; and use of community control or historical control in the study design. Quality assessment and data abstraction was guided by a standardized procedure and performed independently by two authors. Data synthesis was in tabular and text form with meta-analysis not being possible due to the discrepancy in methods and measures between the studies. Results: This review found eight studies, that met all the inclusion criteria. In the studies that measured injury outcomes, significant reductions in risk of motor vehicle occupant injury (33-55%) were reported in the study communities. For those studies reporting observed car seat restraint use the community-based programs were successful in increasing toddler restraint use in 1-5 year aged children by up to 11%; child booster seat use in 4-8 year aged children by up to 13%; rear restraint use in children aged 0-15 years by 8%; a 50% increase in restraint use in pre-school aged children in a high-risk community; and a 44% increase in children aged 5-11 years. Conclusion: While this review highlights that there is some evidence to support the effectiveness of community-based programs to promote car restraint use and/or motor vehicle occupant injury, limitations in the evaluation methodologies of the studies requires the results to be interpreted with caution. There is clearly a need for further high quality program evaluation research to develop an evidence base. (C) 2004 Elsevier Ltd. All rights reserved.

Health-protective behaviours and risk of fall-related hip fractures: a population-based case-control study

Background: fall-related hip fractures are one of the most common causes of disability and mortality in older age. The study aimed to quantify the relationship between lifestyle behaviours and the risk of fall-related hip fracture in community-dwelling older people. The purpose was to contribute evidence for the promotion of healthy ageing as a population-based intervention for falls injury prevention. Methods: a case-control study was conducted with 387 participants, with a case-control ratio of 1:2. Incident cases of fall-related hip fracture in people aged 65 and over were recruited from six hospital sites in Brisbane, Australia, in 2003-04. Community-based controls, matched by age, sex and postcode, were recruited via electoral roll sampling. A questionnaire designed to assess lifestyle risk factors, identified as determinants of healthy ageing, was administered at face-to-face interviews. Results: behavioural factors which had a significant independent protective effect on the risk of hip fracture included never smoking [adjusted odds ratio (AOR): 0.33 (0.12-0.88)], moderate alcohol consumption in mid- and older age [AOR: 0.49 (0.25-0.95)], not losing weight between mid- and older age [AOR: 0.36 (0.20-0.65)], playing sport in older age [AOR: 0.49 (0.29-0.83)] and practising a greater number of preventive medical care [AOR: 0.54 (0.32-0.94)] and self-health behaviours [AOR: 0.56 (0.33-0.94)]. Conclusion: with universal exposures, clear associations and modifiable behavioural factors, this study has contributed evidence to reduce the major public health burden of fall-related hip fractures using readily implemented population-based healthy ageing strategies.

The growing importance of inter-company collaboration

Guest editorial: This special issue has been drawn from papers that were published as part of the Second European Conference on Management of Technology (EuroMOT) which was held at Aston Business School (Birmingham, UK) 10-12 September 2006. This was the official European conference for the International Association for Management of Technology (IAMOT); the overall theme of the conference was “Technology and global integration.” There were many high-calibre papers submitted to the conference and published in the associated proceedings (Bennett et al., 2006). The streams of interest that emerged from these submissions were the importance of: technology strategy, innovation, process technologies, managing change, national policies and systems, research and development, supply chain technology, service and operational technology, education and training, small company incubation, technology transfer, virtual operations, technology in developing countries, partnership and alliance, and financing and investment. This special issue focuses upon the streams of interest that accentuate the importance of collaboration between different organisations. Such organisations vary greatly in character; for instance, they may be large or small, publicly or privately owned, and operate in manufacturing or service sectors. Despite these varying characteristics they all have something in common; they all stress the importance of inter-organisational collaboration as a critical success factor for their organisation. In today's global economy it is essential that organisations decide what their core competencies are what those of complementing organisations are. Core competences should be developed to become a bases of differentiation, leverage and competitive advantage, whilst those that are less mature should be outsourced to other organisations that can claim to have had more recognition and success in that particular core competence (Porter, 2001). This strategic trend can be observed throughout advanced economies and is growing strongly. If a posteriori reasoning is applied here it follows that organisations could continue to become more specialised in fewer areas whilst simultaneously becoming more dependent upon other organisations for critical parts of their operations. Such actions seem to fly in the face of rational business strategy and so the question must be asked: why are organisations developing this way? The answer could lie in the recent changes in endogenous and exogenous factors of the organisation; the former emphasising resource-based issues in the short-term, and strategic positioning in the long-term whilst the later emphasises transaction costs in the short-term and acquisition of new skills and knowledge in the long-term. For a harmonious balance of these forces to prevail requires organisations to firstly declare a shared meta-strategy, then to put some cross-organisational processes into place which have their routine operations automated as far as possible. A rolling business plan would review, assess and reposition each organisation within this meta-strategy according to how well they have contributed (Binder and Clegg, 2006). The important common issue here is that an increasing number of businesses today are gaining direct benefit from increasing their levels of inter-organisational collaboration. Such collaboration has largely been possible due to recent technological advances which can make organisational structures more agile (e.g. the extended or the virtual enterprise), organisational infra-structure more connected, and the sharing of real-time information an operational reality. This special issue consists of research papers that have explored the above phenomenon in some way. For instance, the role of government intervention, the use of internet-based technologies, the role of research and development organisations, the changing relationships between start-ups and established firms, the importance of cross-company communities of practice, the practice of networking, the front-loading of large-scale projects, innovation and the probabilistic uncertainties that organisations experience are explored in these papers. The cases cited in these papers are limited as they have a Eurocentric focus. However, it is hoped that readers of this special issue will gain a valuable insight into the increasing importance of collaborative practices via these studies.

Surveying sexualities: Internet research with non-heterosexuals

In this article we describe and evaluate the process of conducting online survey research about the legal recognition of same-sex relationships (key findings from which we have reported elsewhere, see Harding and Peel, 2006). Our aim in so doing is to contribute to the growing generic literature on internet-based research methods (Nosek et al., 2002; Rhodes et al., 2003; Stern, 2003; Strickland et al., 2003; Thomas et al., 2000) to the research methods literature within lesbian, gay, bisexual, trans and queer (LGBTQ) psychologies (Fish, 2000; Morris and Rothblum, 1999; Meezan and Martin, 2003; Mustanski, 2001) and also to extend the germinal literature focusing on internet research with non-heterosexual groups (Elford et al., 2004; Ellis et al., 2003; Ross et al., 2000). We begin by discussing the process of developing the online survey tool, before outlining the experience of the survey ‘going live’ and providing details of who completed the survey. We conclude by exploring some of the positives and pitfalls of this type of research methodology.

Quantifying short-term dynamics of Parkinson's disease using self-reported symptom data from an internet social network

Background: Parkinson’s disease (PD) is an incurable neurological disease with approximately 0.3% prevalence. The hallmark symptom is gradual movement deterioration. Current scientific consensus about disease progression holds that symptoms will worsen smoothly over time unless treated. Accurate information about symptom dynamics is of critical importance to patients, caregivers, and the scientific community for the design of new treatments, clinical decision making, and individual disease management. Long-term studies characterize the typical time course of the disease as an early linear progression gradually reaching a plateau in later stages. However, symptom dynamics over durations of days to weeks remains unquantified. Currently, there is a scarcity of objective clinical information about symptom dynamics at intervals shorter than 3 months stretching over several years, but Internet-based patient self-report platforms may change this. Objective: To assess the clinical value of online self-reported PD symptom data recorded by users of the health-focused Internet social research platform PatientsLikeMe (PLM), in which patients quantify their symptoms on a regular basis on a subset of the Unified Parkinson’s Disease Ratings Scale (UPDRS). By analyzing this data, we aim for a scientific window on the nature of symptom dynamics for assessment intervals shorter than 3 months over durations of several years. Methods: Online self-reported data was validated against the gold standard Parkinson’s Disease Data and Organizing Center (PD-DOC) database, containing clinical symptom data at intervals greater than 3 months. The data were compared visually using quantile-quantile plots, and numerically using the Kolmogorov-Smirnov test. By using a simple piecewise linear trend estimation algorithm, the PLM data was smoothed to separate random fluctuations from continuous symptom dynamics. Subtracting the trends from the original data revealed random fluctuations in symptom severity. The average magnitude of fluctuations versus time since diagnosis was modeled by using a gamma generalized linear model. Results: Distributions of ages at diagnosis and UPDRS in the PLM and PD-DOC databases were broadly consistent. The PLM patients were systematically younger than the PD-DOC patients and showed increased symptom severity in the PD off state. The average fluctuation in symptoms (UPDRS Parts I and II) was 2.6 points at the time of diagnosis, rising to 5.9 points 16 years after diagnosis. This fluctuation exceeds the estimated minimal and moderate clinically important differences, respectively. Not all patients conformed to the current clinical picture of gradual, smooth changes: many patients had regimes where symptom severity varied in an unpredictable manner, or underwent large rapid changes in an otherwise more stable progression. Conclusions: This information about short-term PD symptom dynamics contributes new scientific understanding about the disease progression, currently very costly to obtain without self-administered Internet-based reporting. This understanding should have implications for the optimization of clinical trials into new treatments and for the choice of treatment decision timescales.