Collaborative biomedicine in the age of big data: the case of cancer.

Biomedicine is undergoing a revolution driven by high throughput and connective computing that is transforming medical research and practice. Using oncology as an example, the speed and capacity of genomic sequencing technologies is advancing the utility of individual genetic profiles for anticipating risk and targeting therapeutics. The goal is to enable an era of "P4" medicine that will become increasingly more predictive, personalized, preemptive, and participative over time. This vision hinges on leveraging potentially innovative and disruptive technologies in medicine to accelerate discovery and to reorient clinical practice for patient-centered care. Based on a panel discussion at the Medicine 2.0 conference in Boston with representatives from the National Cancer Institute, Moffitt Cancer Center, and Stanford University School of Medicine, this paper explores how emerging sociotechnical frameworks, informatics platforms, and health-related policy can be used to encourage data liquidity and innovation. This builds on the Institute of Medicine's vision for a "rapid learning health care system" to enable an open source, population-based approach to cancer prevention and control.

Realizing the promise of Web 2.0: engaging community intelligence.

Discussions of Health 2.0, a term first coined in 2005, were guided by three main tenets: (a) health was to involve more participation, because an evolution in the web encouraged more direct consumer engagement in their own health care; (b) data was to become the new "Intel Inside" for systems supporting the vital decisions in health; and (c) a sense of collective intelligence from the network would supplement traditional sources of knowledge in health decision making. Interests in understanding the implications of a new paradigm for patient engagement in health and health care were kindled by findings from surveys such as the National Cancer Institute's Health Information National Trends Survey, showing that patients were quick to look online for information to help them cope with disease. This article considers how these 3 facets of Health 2.0--participation, data, and collective intelligence--can be harnessed to improve the health of the nation according to Healthy People 2020 goals. The authors begin with an examination of evidence from behavioral science to understand how Web 2.0 participative technologies may influence patient processes and outcomes, for better or worse, in an era of changing communication technologies. The article then focuses specifically on the clinical implications of Health 2.0 and offers recommendations to ensure that changes in the communication environment do not detract from national (e.g., Healthy People 2020) health goals. Changes in the clinical environment, as catalyzed by the Health Information Technology for Economic and Clinical Health Act to take advantage of Health 2.0 principles in evidence-based ways, are also considered.

Quality of Care for Huntington's Disease in the United States: Findings from a National Survey of Patients and Caregivers.

BACKGROUND: Little is known about the quality of care for people living with Huntington's disease (HD) in the United States. OBJECTIVE: To document the current HD care experience and identify gaps in care provision in the United States. METHODS: Web-based surveys for persons self-identifying as being affected by HD (PAHD, which included individuals with, or at risk for HD) or as caregivers/family members, were developed and refined with targeted input from focus groups comprised of caregivers and family members. The surveys were disseminated via social media and patient advocacy partners from April-May 2017. RESULTS: Total valid responses numbered 797, including 585 caregiver/family respondents and 212 PAHD responses. Respondents reported care provision from HD specialty centers, primary care, movement disorder clinics, and other settings. One in five respondents reported that the person with HD was not currently receiving medical or community care. Respondents generally reported a good level of care, with HD specialists providing the highest rated healthcare experience. Caregiver/family respondents reported helping with a range of activities including budget/finances (60.5%), housekeeping (57.1%) and daily help (53.2%). Most respondents (97.9%) reported searching online, including general information about HD (86.4%), using HD social media channels (61.3%) and looking up clinical trials (59.8%). Respondents emphasized a need for support in financial planning and accessing care, and also for more HD education in the medical community. CONCLUSIONS: There is need for more support for HD patients and families. People desire more credible, accessible information. Improving resources available to patients and families should be a goal for HD organizations, along with measurement of patient outcomes.

Accuracy and precision of two short screeners to assess change in fruit and vegetable consumption among diverse populations participating in health promotion intervention trials.

Two short frequency questionnaires, the NCI 19-item Fruit and Vegetable Screener (FVS) and a single question on overall fruit and vegetable consumption (1-item), were evaluated for their ability to assess change in fruit and vegetable (FV) consumption over time and in response to intervention among participants in 5 health promotion trials in the Behavior Change Consortium. Cross-sectional differences and correlations of FV estimates at baseline and at follow-up were compared for the FVS (n = 315) and the 1-item (n = 227), relative to multiple 24-h recall interviews (24HR). The FVS significantly overestimated daily intake by 1.27 servings at baseline among men and by 1.42 and 1.59 servings at baseline and follow-up, respectively, in women, whereas the 1-item measure significantly underestimated intake at both time points in men (0.98 serving at baseline, 0.75 serving at follow-up) and women (0.61 and 0.41 serving). Cross-sectional deattenuated correlations with 24HR at follow-up were 0.48 (FVS) and 0.50 (1-item). To evaluate the capacity of the 2 screeners to assess FV change, we compared mean posttest effects with 24HR by treatment group overall and by gender. Treatment group differences were not significant for either 24HR or 1-item. Among 315 subjects, the FVS treatment group differences were significant both overall and within gender but not when repeated in the sample of 227. Findings suggest multiple 24HR at multiple time points in adequate sample sizes remain the gold standard for FV reports. Biases in FVS estimates may reflect participants' lifestyles and sociodemographic characteristics and require further examination in longitudinal samples representative of diverse populations.

Psychosocial predictors of fruit and vegetable consumption in adults a review of the literature.

BACKGROUND: Adequate fruit and vegetable intake has been found to promote health and reduce the risk of several cancers and chronic diseases. Understanding the psychological determinants of fruit and vegetable intake is needed to design effective intervention programs. METHODS: Papers published in English from 1994 to 2006 that described the relationship between psychosocial predictors and fruit and vegetable intake in adults were reviewed. Studies and their constructs were independently rated based on the direction of significant effects, quality of execution, design suitability, and frequency. Methodology from the Guide to Community Preventive Services was used to systematically review and synthesize findings. RESULTS: Twenty-five psychosocial constructs spanning 35 studies were reviewed (14 prospective and 21 cross-sectional/descriptive studies). Strong evidence was found for self-efficacy, social support, and knowledge as predictors of adult fruit and vegetable intake. Weaker evidence was found for variables including barriers, intentions, attitudes/beliefs, stages of change, and autonomous motivation. CONCLUSIONS: The findings underscore the need to design future behavioral interventions that use strong experimental designs with efficacious constructs and to conduct formal mediation analyses to determine the strength of these potential predictors of fruit and vegetable intake.

Tailoring a fruit and vegetable intervention on novel motivational constructs: results of a randomized study.

BACKGROUND: Tailored health communications to date have been based on a rather narrow set of theoretical constructs. PURPOSE: This study was designed to test whether tailoring a print-based fruit and vegetable (F & V) intervention on relatively novel constructs from self-determination theory (SDT) and motivational interviewing (MI) increases intervention impact, perceived relevance, and program satisfaction. The study also aimed to explore possible user characteristics that may moderate intervention response. METHODS: African American adults were recruited from two integrated health care delivery systems, one based in the Detroit Metro area and the other in the Atlanta Metro area, and then randomized to receive three tailored newsletters over 3 months. One set of newsletters was tailored only on demographic and social cognitive variables (control condition), whereas the other (experimental condition) was tailored on SDT and MI principles and strategies. The primary focus of the newsletters and the primary outcome for the study was fruit and vegetable intake assessed with two brief self-report measures. Preference for autonomy support was assessed at baseline with a single item: "In general, when it comes to my health I would rather an expert just tell me what I should do". Most between-group differences were examined using change scores. RESULTS: A total of 512 (31%) eligible participants, of 1,650 invited, were enrolled, of which 423 provided complete 3-month follow-up data. Considering the entire sample, there were no significant between-group differences in daily F & V intake at 3 month follow-up. Both groups showed similar increases of around one serving per day of F & V on the short form and half a serving per day on the long form. There were, however, significant interactions of intervention group with preference for autonomy-supportive communication as well as with age. Specifically, individuals in the experimental intervention who, at baseline, preferred an autonomy-supportive style of communication increased their F & V intake by 1.07 servings compared to 0.43 servings among controls. Among younger controls, there was a larger change in F & V intake, 0.59 servings, than their experimental group counterparts, 0.29 servings. Conversely, older experimental group participants showed a larger change in F & V, 1.09 servings, than older controls, 0.48. CONCLUSION: Our study confirms the importance of assessing individual differences as potential moderators of tailored health interventions. For those who prefer an autonomy-supportive style of communication, tailoring on values and other motivational constructs can enhance message impact and perceived relevance.

Development and implementation of the National Cancer Institute's Food Attitudes and Behaviors Survey to assess correlates of fruit and vegetable intake in adults.

BACKGROUND: Low fruit and vegetable (FV) intake is a leading risk factor for chronic disease globally as well as in the United States. Much of the population does not consume the recommended servings of FV daily. This paper describes the development of psychosocial measures of FV intake for inclusion in the U.S. National Cancer Institute's 2007 Food Attitudes and Behaviors Survey. METHODS: This was a cross-sectional study among 3,397 adults from the United States. Scales included conventional constructs shown to be correlated with fruit and vegetable intake (FVI) in prior studies (e.g., self-efficacy, social support), and novel constructs that have been measured in few- to- no studies (e.g., views on vegetarianism, neophobia). FVI was assessed with an eight-item screener. Exploratory factor analysis, Cronbach's alpha, and regression analyses were conducted. RESULTS: Psychosocial scales with Cronbach's alpha ≥0.68 were self-efficacy, social support, perceived barriers and benefits of eating FVs, views on vegetarianism, autonomous and controlled motivation, and preference for FVs. Conventional scales that were associated (p<0.05) with FVI were self-efficacy, social support, and perceived barriers to eating FVs. Novel scales that were associated (p<0.05) with FVI were autonomous motivation, and preference for vegetables. Other single items that were associated (p<0.05) with FVI included knowledge of FV recommendations, FVI "while growing up", and daily water consumption. CONCLUSION: These findings may inform future behavioral interventions as well as further exploration of other potential factors to promote and support FVI.

Sharing behavioral data through a grid infrastructure using data standards.

OBJECTIVE: In an effort to standardize behavioral measures and their data representation, the present study develops a methodology for incorporating measures found in the National Cancer Institute's (NCI) grid-enabled measures (GEM) portal, a repository for behavioral and social measures, into the cancer data standards registry and repository (caDSR). METHODS: The methodology consists of four parts for curating GEM measures into the caDSR: (1) develop unified modeling language (UML) models for behavioral measures; (2) create common data elements (CDE) for UML components; (3) bind CDE with concepts from the NCI thesaurus; and (4) register CDE in the caDSR. RESULTS: UML models have been developed for four GEM measures, which have been registered in the caDSR as CDE. New behavioral concepts related to these measures have been created and incorporated into the NCI thesaurus. Best practices for representing measures using UML models have been utilized in the practice (eg, caDSR). One dataset based on a GEM-curated measure is available for use by other systems and users connected to the grid. CONCLUSIONS: Behavioral and population science data can be standardized by using and extending current standards. A new branch of CDE for behavioral science was developed for the caDSR. It expands the caDSR domain coverage beyond the clinical and biological areas. In addition, missing terms and concepts specific to the behavioral measures addressed in this paper were added to the NCI thesaurus. A methodology was developed and refined for curation of behavioral and population science data.

Evaluation of three short dietary instruments to assess fruit and vegetable intake: the National Cancer Institute's food attitudes and behaviors survey.

BACKGROUND: Fruit and vegetable (F/V) intake assessment tools that are valid, reliable, brief, and easy to administer and code are vital to the field of public health nutrition. OBJECTIVE: To evaluate three short F/V intake screeners (ie, a 2-item serving tool, a 2-item cup tool, and a 16-item F/V intake screener) among adults using multiple 24-hour dietary recalls (24-hour recalls) as the reference instrument and evaluate test-retest reliability of the screeners across a 2- to 3-week time period. DESIGN: Validity and reliability study. PARTICIPANTS/SETTING: Two hundred forty-four adults for the validity study and 335 adults for test-retest reliability. STATISTICAL ANALYSES PERFORMED: Median values for F/V intakes were calculated for the screeners and 24-hour recalls. The Wilcoxon signed rank test was used to compare screeners with the 24-hour recalls. Deattenuated Pearson correlations were reported for validity and intraclass correlation coefficient used for reliability. RESULTS: The estimated median daily servings/cups of F/V for the 2-item serving screener was lower, for the 2-item cup screener was equivalent for men but higher for women, and for the 16-item F/V intake screener were about the same when compared with 24-hour recall values. The deattenuated correlations comparing the 24-hour recalls with the screeners were positive but weak for the 2-item serving screener, and were positive and moderate in strength for the 2-item cup and 16-item F/V intake screeners. The test-retest intraclass correlation coefficients were all positive and fairly strong for all of the screeners. CONCLUSIONS: Although dietary screeners offer a more cost-effective, less burdensome way to obtain gross estimates to rank individuals with regard to F/V intake, these methods are not recommended for assessing precise intake levels.

Adapting research-tested computerized tailored interventions for broader dissemination and implementation.

This paper focuses on the process for adapting existing legacy computerized tailored intervention (CTI) programs and implications for future development of CTI to ensure that interventions can be disseminated and implemented in different settings. A significant amount of work is required to adapt existing CTI for new research applications and public health interventions. Most new CTI are still developed from scratch, with minimal re-use of software or message content, even when there are considerable overlaps in functionality. This is largely a function of the substantial technical, organizational, and content-based barriers to adapting and disseminating CTI. CTI developers should thus consider dissemination and re-use early in the design phase of their systems. This is not intended to be a step-by-step guide on how to adopt or disseminate research-tested CTI, but rather a discussion that highlights issues to be considered for adapting and disseminating evidence-based CTI.

Health cyberinfrastructure for collaborative use-inspired research and practice.

Rapid advances in information and networking technologies have greatly expanded the modes for conducting business and science. For the past two decades, the National Science Foundation (NSF) has been supporting efforts to develop a comprehensive cyberinfrastructure with the goal of transforming the nature of scientific investigations. More recently, the NIH began supporting efforts to develop a cyberinfrastructure of healthcare research and practice. However, the best structure and applications of cyberinfrastructure in health care have yet to be defined. To address these issues, the NIH and the Kay Center for E-Health Research at Claremont Graduate University sponsored a symposium on "Cyberinfrastructure for Public Health and Health Services: Research and Funding Directions." The symposium convened researchers, practitioners, and federal funders to discuss how to further cyberinfrastructure systems and research in the public health and health services sectors. This paper synthesizes findings of the symposium, the goals of which were to determine the dynamics necessary for executing and utilizing cyberinfrastructure in public health and health services; examine the requirements of transdisciplinary collaboration; and identify future research directions. A multi-faceted conception of use-inspired research for cyberinfrastructure is developed. Use-inspired research aims to further basic theory but is grounded, inspired, and informed by practical problems. A cyberinfrastructure framework is presented that incorporates three intersecting dimensions: research-practice, health services-public health, and social-technical dimensions. Within this framework, this paper discusses the ways in which cyberinfrastructure provides opportunities to integrate across these dimensions to develop research and actions that can improve both clinical outcomes and public health.

Direct and mediated effects of two theoretically based interventions to increase consumption of fruits and vegetables in the Healthy Body Healthy Spirit trial.

This study tested the effects of two theory-based interventions to increase fruit and vegetable intake. Hypothesized intervention mediators included self-efficacy (SE), social support (SS), autonomous motivation (AM), and controlled motivation (CM). At baseline, 1,021 African American adults were recruited from 16 churches randomized to one comparison and two intervention groups: Group 1 (standard educational materials), Group 2 (culturally targeted materials), and Group 3 (culturally targeted materials and telephone-based motivational interviewing). A well-fitted model based on structural equation modeling-χ(2)(df = 541, N = 353, 325) = 864.28, p < .001, normed fit index = .96, nonnormed fit index = .98, comparative fit index = .98, root mean square error of approximation = .042-demonstrated that AM was both a significant mediator and moderator. In the subgroup with low baseline AM, AM mediated 17% of the effect of the Group 3 intervention on fruit and vegetable intake. Conversely, SS, SE, and CM were not significant mediators. Implications related to theory and intervention development are discussed.

Grid-enabled measures: using Science 2.0 to standardize measures and share data.

Scientists are taking advantage of the Internet and collaborative web technology to accelerate discovery in a massively connected, participative environment--a phenomenon referred to by some as Science 2.0. As a new way of doing science, this phenomenon has the potential to push science forward in a more efficient manner than was previously possible. The Grid-Enabled Measures (GEM) database has been conceptualized as an instantiation of Science 2.0 principles by the National Cancer Institute (NCI) with two overarching goals: (1) promote the use of standardized measures, which are tied to theoretically based constructs; and (2) facilitate the ability to share harmonized data resulting from the use of standardized measures. The first is accomplished by creating an online venue where a virtual community of researchers can collaborate together and come to consensus on measures by rating, commenting on, and viewing meta-data about the measures and associated constructs. The second is accomplished by connecting the constructs and measures to an ontological framework with data standards and common data elements such as the NCI Enterprise Vocabulary System (EVS) and the cancer Data Standards Repository (caDSR). This paper will describe the web 2.0 principles on which the GEM database is based, describe its functionality, and discuss some of the important issues involved with creating the GEM database such as the role of mutually agreed-on ontologies (i.e., knowledge categories and the relationships among these categories--for data sharing).