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Background The need for a better understanding of food consumption behaviour within its behavioural context has sparked the interest of nutrition researchers for user-documented food consumption data collected outside the research context using publicly available nutrition apps. The study aims to characterize the scientific, technical, legal and ethical features of this data in order to identify the opportunities and challenges associated with using this data for nutrition research. Method A search for apps collecting food consumption data was conducted in October 2016 against UK Google Play and iTunes storefronts. 176 apps were selected based on user ratings and English language support. Publicly available information from the app stores and app-related websites was investigated and relevant data extracted and summarized. Our focus was on characteristics related to scientific relevance, data management and legal and ethical governance of user-documented food consumption data. Results Food diaries are the most common form of data collection, allowing for multiple inputs including generic food items, packaged products, or images. Standards and procedures for compiling food databases used for estimating energy and nutrient intakes remain largely undisclosed. Food consumption data is interlinked with various types of contextual data related to behavioural motivation, physical activity, health, and fitness. While exchange of data between apps is common practise, the majority of apps lack technical documentation regarding data export. There is a similar lack of documentation regarding the implemented terms of use and privacy policies. While users are usually the owners of their data, vendors are granted irrevocable and royalty free licenses to commercially exploit the data. Conclusion Due to its magnitude, diversity, and interconnectedness, user-documented food consumption data offers promising opportunities for a better understanding of habitual food consumption behaviour and its determinants. Non-standardized or non-documented food data compilation procedures, data exchange protocols and formats, terms of use and privacy statements, however, limit possibilities to integrate, process and share user-documented food consumption data. An ongoing research effort is required, to keep pace with the technical advancements of food consumption apps, their evolving data networks and the legal and ethical regulations related to protecting app users and their personal data.

Mobile health, predominantly wearable technology and mobile apps, have been considered in Parkinson disease to provide valuable ecological data between face-to-face visits and improve monitoring of motor symptoms remotely. We explored the feasibility of using a technology-based mHealth platform comprising a smartphone in combination with a smartwatch and a pair of smart insoles, described in this study as the PD_manager system, to collect clinically meaningful data. We also explored outcomes and disease-related factors that are important determinants to establish feasibility. Finally, we further validated a tremor evaluation method with data collected while patients performed their daily activities. PD_manager trial was an open-label parallel group randomized study.The mHealth platform consists of a wristband, a pair of sensor insoles, a smartphone (with dedicated mobile Android apps) and a knowledge platform serving as the cloud backend. Compliance was assessed with statistical analysis and the factors affecting it using appropriate regression analysis. The correlation of the scores of our previous algorithm for tremor evaluation and the respective Unified Parkinson's Disease Rating Scale estimations by clinicians were explored. Of the 75 study participants, 65 (87%) completed the protocol. They used the PD_manager system for a median 11.57 (SD 3.15) days. Regression analysis suggests that the main factor associated with high use was caregivers' burden. Motor Aspects of Experiences of Daily Living and patients' self-rated health status also influence the system's use. Our algorithm provided clinically meaningful data for the detection and evaluation of tremor. We found that PD patients, regardless of their demographics and disease characteristics, used the system for 11 to 14 days. The study further supports that mHealth can be an effective tool for the ecologically valid, passive, unobtrusive monitoring and evaluation of symptoms. Future studies will be required to demonstrate that an mHealth platform can improve disease management and care. ISRCTN Registry ISRCTN17396879; http://www.isrctn.com/ISRCTN17396879. RR2-10.1186/s13063-018-2767-4.

Health research using commercial data is increasing. The evidence on public acceptability and sociodemographic characteristics of individuals willing to share commercial data for health research is scarce. This survey study investigates the willingness to share commercial data for health research in the United Kingdom with 3 different organizations (government, private, and academic institutions), 5 different data types (internet, shopping, wearable devices, smartphones, and social media), and 10 different invitation methods to recruit participants for research studies with a focus on sociodemographic characteristics and psychological predictors. We conducted a web-based survey using quota sampling based on age distribution in the United Kingdom in July 2020 (N=1534). Chi-squared tests tested differences by sociodemographic characteristics, and adjusted ordered logistic regressions tested associations with trust, perceived importance of privacy, worry about data misuse and perceived risks, and perceived benefits of data sharing. The results are shown as percentages, adjusted odds ratios, and 95% CIs. Overall, 61.1% (937/1534) of participants were willing to share their data with the government and 61% (936/1534) of participants were willing to share their data with academic research institutions compared with 43.1% (661/1534) who were willing to share their data with private organizations. The willingness to share varied between specific types of data-51.8% (794/1534) for loyalty cards, 35.2% (540/1534) for internet search history, 32% (491/1534) for smartphone data, 31.8% (488/1534) for wearable device data, and 30.4% (467/1534) for social media data. Increasing age was consistently and negatively associated with all the outcomes. Trust was positively associated with willingness to share commercial data, whereas worry about data misuse and the perceived importance of privacy were negatively associated with willingness to share commercial data. The perceived risk of sharing data was positively associated with willingness to share when the participants considered all the specific data types but not with the organizations. The participants favored postal research invitations over digital research invitations. This UK-based survey study shows that willingness to share commercial data for health research varies; however, researchers should focus on effectively communicating their data practices to minimize concerns about data misuse and improve public trust in data science. The results of this study can be further used as a guide to consider methods to improve recruitment strategies in health-related research and to improve response rates and participant retention.

Background Parkinson’s disease is a degenerative neurological condition causing multiple motor and non-motor symptoms that have a serious adverse effect on quality of life. Management is problematic due to the variable and fluctuating nature of symptoms, often hourly and daily. The PD_Manager mHealth platform aims to provide a continuous feed of data on symptoms to improve clinical understanding of the status of any individual patient and inform care planning. The objectives of this trial are to (1) assess patient (and family carer) perspectives of PD_Manager regarding comfort, acceptability and ease of use; (2) assess clinician views about the utility of the data generated by PD_Manager for clinical decision making and the acceptability of the system in clinical practice. Methods/design This trial is an unblinded, parallel, two-group, randomised controlled pilot study. A total of 200 persons with Parkinson’s disease (Hoehn and Yahr stage 3, experiencing motor fluctuations at least 2 h per day), with primary family carers, in three countries (110 Rome, 50 Venice, Italy; 20 each in Ioannina, Greece and Surrey, England) will be recruited. Following informed consent, baseline information will be gathered, including the following: age, gender, education, attitudes to technology (patient and carer); time since Parkinson’s diagnosis, symptom status and comorbidities (patient only). Randomisation will assign participants (1:1 in each country), to PD_Manager vs control, stratifying by age (1 ≤ 70 : 1 > 70) and gender (60% M: 40% F). The PD_Manager system captures continuous data on motor symptoms, sleep, activity, speech quality and emotional state using wearable devices (wristband, insoles) and a smartphone (with apps) for storing and transmitting the information. Control group participants will be asked to keep a symptom diary covering the same elements as PD_Manager records. After a minimum of two weeks, each participant will attend a consultation with a specialist doctor for review of the data gathered (by either means), and changes to management will be initiated as indicated. Patients, carers and clinicians will be asked for feedback on the acceptability and utility of the data collection methods. The PD_Manager intervention, compared to a symptom diary, will be evaluated in a cost-consequences framework. Discussion Information gathered will inform further development of the PD_Manager system and a larger effectiveness trial. Trial registration ISRCTN Registry, ISRCTN17396879 . Registered on 15 March 2017.

The objective was to identify the main factors influencing micronutrient policies in the opinion of policy actors in ten European countries. Study was carried out during Jan-Nov 2010 in European countries: the Czech Republic, Denmark, England, Germany, Greece, Italy, the Netherlands, Norway, Poland and Spain. Semi-structured qualitative interviews were conducted with representatives of stakeholders involved in the vitamin D, folate and iodine policy making process. Fifty eight key informants representing mainly scientific advisory bodies (n=24) and governmental organisations (n=19) participated in the study. The remaining interviewees represented non-governmental organisations (n=6), industry (n=4) or were independent academic or health professional experts (n=5). Data were analysed by theoretical interpretative thematic analysis. Insights from interviewees on the development of micronutrient policies were grouped using the Public Health Nutrition Policy-making model. The main factors influencing the micronutrient policies were: systematic monitoring of nutrition and health, causal relationships between consumers’ diet-related behaviours and health outcomes, scientific recommendations from national bodies (Science area); scientific recommendations from international authorities and experiences of other countries, EU legislation, cultural factors (Wider context) and political environment, national capacity to deal with the problem, national legislation, economics, stakeholder engagement, relationships between stakeholders (Policy and institutions area). The spectrum and weight of the factors influencing nutritional policy depends on nutrient, country and degree of its “advanced status” within nutrition policy, political environment, culture and socio-economic conditions as well as the point of view (who is expressing the opinion).

Food-based dietary guidelines (FBDG) have primarily been designed for the consumer to encourage healthy, habitual food choices, decrease chronic disease risk and improve public health. However, minimal research has been conducted to evaluate whether FBDG are utilised by the public. The present review used a framework of three concepts, awareness, understanding and use, to summarise consumer evidence related to national FBDG and food guides. Searches of nine electronic databases, reference lists and Internet grey literature elicited 939 articles. Predetermined exclusion criteria selected twenty-eight studies for review. These consisted of qualitative, quantitative and mixed study designs, non-clinical participants, related to official FBDG for the general public, and involved measures of consumer awareness, understanding or use of FBDG. The three concepts of awareness, understanding and use were often discussed interchangeably. Nevertheless, a greater amount of evidence for consumer awareness and understanding was reported than consumer use of FBDG. The twenty-eight studies varied in terms of aim, design and method. Study quality also varied with raw qualitative data, and quantitative method details were often omitted. Thus, the reliability and validity of these review findings may be limited. Further research is required to evaluate the efficacy of FBDG as a public health promotion tool. If the purpose of FBDG is to evoke consumer behaviour change, then the framework of consumer awareness, understanding and use of FBDG may be useful to categorise consumer behaviour studies and complement the dietary survey and health outcome data in the process of FBDG evaluation and revision.

There is limited understanding of what constitutes public benefit from the perspective of the public, and none that we are aware of related to food consumer science. The purpose of this study is to contribute towards a better understanding of public benefit as a whole and its connection to food choice, essential to driving progress towards responsible consumption and healthier diets. Public benefit, associated trade-offs and responsible actors were investigated via written questions, and food choice was explored during group discussions using the PlayDecide methodology. Adults (n = 105) were recruited in six European countries (Denmark, Germany, Italy, Slovakia, Spain and the UK) and stratified by attained education. Our findings indicate that assumptions should not be made that there is general consensus about what constitutes public benefit, especially with regard to consumer food choice. Group discussions around food-related freedom of choice, education, agency and responsibility suggested that private and public benefit are neither mutually exclusive nor automatically complementary. The serious game approach employed affected a change in participants’ public benefit perceptions, demonstrating its potential to better evaluate the connections between private interests and the common good through meaningful public deliberation.

Responsible research and innovation (RRI) approaches that have emerged in the past ten years point to the importance of engaging the public in dialogues about research. The different variants of RRI share the notion that societal actors, including citizens, need to work together – that is, engage in two-way communication during the research and innovation process – in order to better align both the process and its outcomes with the values, needs and expectations of society. Yet, sponsors and organizers of dialogues about research often face difficulties in recruiting sufficient numbers of participants or ensuring a sufficient level of diversity of participants. This paper asks what motivates or hinders individual citizens as members of the broader public to participate in such dialogues. It presents empirical findings of the European Union-funded project Promoting Societal Engagement Under the Terms of RRI (PROSO), which aimed to foster public engagement with research for RRI. PROSO used a quasi-experimental, qualitative approach directly involving citizens to address this question. The core of the innovative methodology were focus group discussions with European citizens about hypothetical opportunities to take part in dialogues about research. Three hypothetical scenarios of different dialogue formats (varied by whether they seek to inform the participants, consult or enable deeper collaboration on a scientific issue) were used as stimuli to explore the participants’ willingness (motivations and perceived barriers) to engage with scientific research. Our findings show a preference towards dialogue formats that give citizens a more active role and a greater say in research policy or research funding. They further suggest that those who seek to broaden citizen participation in dialogues about research should consider the role of relevance, impact, trust, legitimacy, knowledge, and time and resources as factors that can motivate or discourage citizens to take part. Based on our findings, we discuss possibilities to promote citizen participation in dialogues about research as part of putting RRI into practice.

Most food in the United Kingdom is purchased in supermarkets, and many of these purchases are routinely tracked through supermarket loyalty card data. Using such data may be an effective way to develop remote public health interventions and to measure objectively their effectiveness at changing food purchasing behavior. The Front-of-pack food Labels: Impact on Consumer Choice (FLICC) study is a pilot randomized controlled trial of a digital behavior change intervention. This pilot trial aimed to collect data on recruitment and retention rates and to provide estimates of effect sizes for the primary outcome (healthiness of ready meals and pizzas purchased) to inform a larger trial. The intervention consisted of a website where participants could access tailored feedback on previous purchases of ready meals and pizzas, set goals for behavior change, and model and practice the recommended healthy shopping behavior using traffic light labels. The control consisted of Web-based information on traffic light labeling. Participants were recruited via email from a list of loyalty card holders held by the participating supermarket. All food and drink purchases for the participants for the 6 months before recruitment, during the 6-week intervention period, and during a 12-week washout period were transferred to the research team by the participating supermarket. Healthiness of ready meals and pizzas was measured using a predeveloped scale based solely on the traffic light colors on the foods. Questionnaires were completed at recruitment, end of the intervention, and end of washout to estimate the effect of the intervention on variables that mediate behavior change (eg, belief and intention formation). We recruited 496 participants from an initial email to 50,000 people. Only 3 people withdrew from the study, and purchase data were received for all other participants. A total of 208 participants completed all 3 questionnaires. There was no difference in the healthiness of purchased ready meals and pizzas between the intervention and control arms either during the intervention period (P=.32) or at washout (P=.59). Although the FLICC study did not find evidence of an impact of the intervention on food purchasing behavior, the unique methods used in this pilot trial are informative for future studies that plan to use supermarket loyalty card data in collaboration with supermarket partners. The experience of the trial showcases the possibilities and challenges associated with the use of loyalty card data in public health research. ISRCTN Registry ISRCTN19316955; http://www.isrctn.com/ISRCTN19316955 (Archived by WebCite at http://www.webcitation.org/76IVZ9WjK). RR2-10.1186/s40814-015-0015-1.