Having completed my PhD in 2000 (University of Surrey) in the area of identity processes in the context of social and cross-cultural mobility, I have subsequently worked within advertising industry (J. Walter Thompson). I joined the Food, Consumer Behaviour and Health Research Centre (FCBH) at the University of Surrey (Department of Psychology) in 2002, a multidisciplinary research centre which brings together skills and expertise from across the University in order to address research questions on food related policy, consumer behaviour and public health. Since my arrival, I have played an instrumental role in the success of the Research Centre, working on research projects of substantive theoretical and applied relevance. I work within the critical public health framework and my empirically-oriented work has focused on understanding the role and nature of public and stakeholder engagement and dialogue in policy and science, risk perception and governance, and science-policy interaction. Policy relevance is a key theme across my research projects, and my work is aimed at both understanding the processes of policy making, and contributing evidence on which to base policies. I am particularly interested in public health nutrition, sustainable diets and illness prevention.
Areas of specialism
University roles and responsibilities
- 2018- present: School Research Committee, School of Psychology, University of Surrey
- 2013-2015: Health and Well-being Research Group Lead, School of Psychology, University of Surrey
- 2010-2014: ESRC South East Doctoral Training Centre Psychology Lead/Coordinator, University of Surrey
- 2009-2012: School of Psychology Research Committee Deputy Chair, University of Surrey
Affiliations and memberships
Risk perception and governance
Risk is arguably the most common concept through which policy makers, clinicians and scientists have come to understand the role of new technologies in society. Risk concepts have provided the framework for developing policies as they pertain to a range of domains, from food, health to climate change. My research in this area, whilst applied, has focused on the issue of risk governance and the way in which it can affect publics’ perceptions of risks (e.g. the role of precaution) or can act to frame a problem in a way that systematically excludes certain perspectives.
Open science and health innovation
My most recent interests are relevant to the current international efforts to establish new scientific and data governance regimes, to enable scientists’ access to high quality, linked and harmonised structured and unstructured (big) data. Of particular interest is the issue of ethics and legitimacy of the processes of big data harvesting, curating and re-purposing. Across my most recent projects I have led the work packages to address the issues of ethics and user perspectives, whilst managing the development of products (e.g. clinical mHealth decision-making tools) and systems (e.g. research infrastructures) to enable linked data for the purpose of research or clinical practice.
Ethics, Responsible Research and Innovation, and Public/stakeholder Engagement
Public and stakeholder involvement in science and policy has gained a significant traction in the past 20 years, during the period of “participatory turn” in the processes of developing policies and setting trajectories of science and innovation. It is thought that public and stakeholder engagement are requirements both in terms of enhancing democratic legitimacy and improving valorisation and impact of scientific outputs. Over the past 15 years I have been investigating the role of public and stakeholder engagement and contributed to the development of concepts in this domain – those of science in society, science with society and responsible research and innovation (RRI).
Policy interventions and policy development
I have evaluated a number of policy interventions to change behaviour, inform about risks or alleviate psychological distress. I continue to seek projects that will be provide critical evaluation of the theoretical and methodological approaches to behavioural and social change. In addition, I have focused on understanding the processes of policy options development that may not be directed at behaviour change but may create contexts and conditions for social/behaviour change.
To be added soon
The SWEET project has been designed to i) identify and address the barriers and facilitators to the use of sweeteners and sweetness enhancers (S&SEs) and ii) examine the risks and benefits of using S&SEs to replace sugar in the diet in the contexts of health, obesity, safety and sustainability. Industry experts will integrate technological, health and sweetness databases to provide a platform on which new and emerging S&SEs can be selected for inclusion in food products. The behavioural and physiological impact of specific S&SEs will be examined in acute and repeated dosing studies and natural population differences (by age, region, gender etc) in sweetness perception established. A sensory profile will be developed and genetic determinants assessed. The core randomised controlled trial will adopt a whole diet approach to examine the impact of prolonged sugar replacement on weight control, appetite and energy intake. Underlying mechanistic effects of S&SE use, alone and in combination, will be evaluated using the technology platform developed in acute studies. Outcomes relating to safety and overall health risks will be i) measured in acute and chronic studies and ii) investigated in secondary data (long term interventions, prospective cohorts). The preferences for and perceptions of S&SEs within European consumers, and the barriers to their acceptance, consumption and use will be determined. The environmental cost and sustainability of replacing sugar with S&SEs will also be modelled. Consumers will be engaged to inform research design, and stakeholder driven exploitation and impact plans will be developed to communicate and disseminate project objectives and results to i) address the role of sweeteners in weight control for target audiences (consumers, health professions, scientists, policy makers, regulators) and ii) move effective products nearer to market. A gender action plan will be developed and implemented to promote equity across all research activities.
PROSO is the short name of a project called Promoting Societal Engagement in Research and Innovation. The major goal of the PROSO project is to provide guidance on how to encourage engagement of citizens and third sector organizations, like non-governmental organizations (NGOs) and civil society organizations (CSOs), in Europe’s research and innovation processes. This guidance shall help in moving towards Responsible Research and Innovation (RRI), the European Union’s approach to good governance in research and innovation (R&I). Societal engagement in R&I is an important element of the EU’s RRI approach. In PROSO we developed guidance in form of a policy and practice guide. The guide was based on the results of PROSO’s in-depth analysis of the barriers and incentives for engaging third sector actors and citizens in publicly funded research and innovation. We investigated barriers and incentives through various approaches, in dialogue with a wide range of stakeholders, including science/technology policy makers, research funders, academics, industry/businesses, third sector organizations and citizens, and in relation to three areas of research and innovation. The three areas are nanotechnology, food and health, and bio-economy.
Making “the healthy choice the easy choice” requires knowledge about our dietary habits. This knowledge comes from analysing different types of information such as: What food and drinks are we buying, preparing and eating? Where? Why? How? With whom? In what social and physical context? New ICT technologies bring opportunities for researchers to monitor and collect information on these behaviours. Every day, consumers and businesses generate “big data” – large volumes of information, that offer detailed descriptions of behaviours, including time and place (e.g. using GPS). If these data-rich sources could be linked and analysed, they have the potential to contribute greatly towards answering key questions to respond to societal challenges regarding food and health (e.g., obesity, cardiovascular disease, sustainability). RICHFIELDS aims to design a consumer-data platform to collect and connect, compare and share information about our food behaviours, to revolutionise research on every-day choices made across Europe. RICHFIELDS seeks to determine what facilities, resources, and services can support research to learn more about what we choose to eat, and how and why we make those choices.
Parkinson’s is a complicated, individual disorder that many patients live with for many years/decades. For this reason, a multidisciplinary disease management, involving several professions working together (neurologists, physiotherapists, speech and language therapists, occupational therapists, dietitians), is important to ensure that the patient retains his/her independence and continues to enjoy the best quality of life possible. The objectives of the PD_manager project were to: a) model the behaviors of intended users of PD_manager (patients, caregivers, neurologists and other health-care providers); b) educate patients, caregivers and healthcare providers with the focus on occupational and speech therapies; c) propose a set of unobtrusive, simple-in-use, co-operative, mobile devices that will be used for symptoms monitoring and collection of adherence data (smartphone, sensor insole, smart pillbox, wristband with several sensors for acceleration, heart rate, etc.).
Improving health through lifestyle, food and nutrition can help combat such issues but high quality research to design effective strategies is required. EU-wide research collaborations and innovations are essential to improve the efficiency of the, mainly public, research resources and will provide competitive advantage at the global level. To support this, EuroDISH assessed the current needs for food and health research infrastructures in Europe. Research infrastructures are facilities, resources or services which support the scientific community to conduct top-level research. EuroDISH was a three year project funded under the EU 7th Framework Programme. It focused on the integration of existing food and health research infrastructures, as well as the development of new ones. It considered the needs of different stakeholders, such as EU and national policy makers, and researchers from a range of disciplines in both the public sector and industry.
Health claims and symbols on food labels are aids to help consumers identify foods that are healthier options, but little is known about their impact on consumer understanding, choice and consumption. CLYMBOL aimed to determine how health-related claims and symbols were understood by consumers, and how they affected purchasing and consumption. Researchers took into account the individual differences in needs and wants and country-specific differences with regard to the use of health claims and symbols. CLYMBOL produced a set of methods for policy-makers and the food industry to assess the effects of health claims and symbols on food labels as these appear on the market, and recommendations on how health claims and symbols can be used to strengthen informed choice, healthy eating and industrial competitiveness. The project drew heavily on the involvement of stakeholders from the whole food sector to ensure results with high practical relevance.
The overarching objective of INPROFOOD was the promotion of bottom-up concepts (processes and structures) of societal engagement in food and health research. INPROFOOD objectives were: a) to investigate current processes and structures of research programming in the area of food and health is to bring further insight in existing gaps and potential possibilities for improvements; 2) the development, implementation, and subsequent analysis of stakeholder engagement and mutual learning exercises at national and European level shall bring valuable directions for future research programming in food and health; 3) to develop an Action Plan addressed to policy makers will be issued to stimulate the uptake of concrete initiatives of societal engagement in food and health; 4) to evaluate the methodology implemented during the project in relation to its objectives and expected impacts to show possible areas of improvement in future Mobilization and Mutual Learning Actions. Finally, INPROFOOD has set out to keep the targeted audiences and the wider interested public informed about the progress and dynamics of the project and to support and to complement the FP7 research programmes KBBE and HEALTH by establishing cooperation with approved projects and implementing joint activities.the overarching objective of INPROFOOD was the promotion of bottom-up concepts (processes and structures) of societal engagement in food and health research. INPROFOOD has been designed to meet the following objectives.
Plant food supplements, or botanicals, have high acceptance by European consumers. Potentially, they can deliver significant health benefits, safely, and at relatively low costs. New regulations and EFSA guidance are also now in. However, concerns about safety, quality and efficacy of these products remain, and bottle-necks in risk and benefit assessments need to be solved. PlantLIBRA (PLANT food supplements: Levels of Intake, Benefit and Risk Assessment) aimed to foster the safe use of food supplements containing plants or herbal extracts, by increasing science-based decision-making by regulators and food chain operators. PlantLIBRA was structured to develop, validate and disseminate data and methodologies for risk and benefit assessment and implement sustainable international cooperation. International cooperation, on-spot and in-language capacity building are necessary to ensure the quality of the plants imported in the EU.
Postgraduate research supervision
Christina Sadler: Understanding consumer perceptions of processed foods – to support informed healthful choices. Doctoral College Studentship Award (2018-2022)
Mark Wherry: Decision-making process in genetic screening for BRCA gene. University of Surrey Funded PhD studentship. (2016-2019)
Dr Sarah Whitson (PsychD Clinical Psychology): “The Relationship Between Body Weight and Psychological Distress: Exploring the Mediating Role of Physical Self-Concept” (2015-2017)
Dr Mary Yasemin Hirst: “Non-participation in screening for the inherited conditions in the young: A systematic investigation of decision-making processes.” ESRC Case Studentship (2011- 2014)
Dr Reem Shafiq (PsychD Psychotherapeutic and Counselling Psychology): “A qualitative exploration of how civilian survivors of armed conflict construct the meaning of ‘justice: Palestine (Gaza), Syria and Iraq.” (2013-2015)
Applied Psychology and Public Policy, FHEQ Level 6 (Year 3), module convenor 2015-present
Applied Psychology and Public Policy, FHEQ Level 7 (Masters Module), module convenor 2018-present
Contemporary Health Psychology and Professional Practice, FHEQ Level 7 (Masters Module), 2017-Present
Social Change and Influence, FHEQ Level 7 (Masters Module), 2010-Present
Animals and Society Module, FHEQ Level 5 (Year 3), 2015-2016
Public Health Nutrition, FHEQ Level 7 (Masters Module), 2008-2013
MSc dissertation supervision
Courses I teach on
The involvement of consumers in the development of dietary guidelines has been promoted by national and international bodies. Yet, few best practice guidelines have been established to assist such involvement.
Qualitative semi-structured interviews explored stakeholders? beliefs about consumer involvement in dietary guideline development.
Interviews were conducted in six European countries: The Czech Republic, Germany, Norway, Serbia, Spain and the United Kingdom.
Seventy-seven stakeholders were interviewed. Stakeholders were grouped as government, scientific advisory body, professional and academic, industry or non-government organisations. Response rate ranged from 45%-95%.
Thematic analysis was conducted with the assistance of NVivo qualitative software (QSR International Pyt Ltd.). Analysis identified two main themes: type of consumer involvement and pros and cons of consumer involvement. Direct consumer involvement (e.g. consumer organisations), in the decision-making process was discussed as a facilitator to guideline communication towards the end of the process. Indirect consumer involvement (e.g. consumer research data), was considered at both the beginning and the end of the process. Cons to consumer involvement included the effect of vested interests on objectivity; consumer disinterest;
complications in terms of time, finance and technical understanding. Pros related to increased credibility and trust in the process.
Stakeholders acknowledged benefits to consumer involvement during the development of dietary guidelines, but remained unclear on the advantage of direct contributions to the scientific content of guidelines. In the absence of established best practice, clarity on the type and reasons for consumer involvement would benefit all actors.
to the variety of public health nutrition (PHN) policy traditions between countries and the diversity in scientific bases used to inform
policy(1) This is particularly apparent in the misalignment of micronutrient reference values (MRV) across European countries and
regions(2). MRV often inform food and nutrition policies which are becoming an increasingly more important part of public health policies
due to the burden associated with nutrition-related diseases.
Desk research and a questionnaire completed by key informants were used to collect data relating to the processes used to develop
current MRV in thirty-one European countries, employing methods reported previously(2). Data were collected on the process of scientific
decision-making, including information on the transparency and openness of the process.
Considerable diversity was observed across Europe in the institutional context and nutrition policy imperatives driving the process of
developing MRV. In those countries that have an established tradition of PHN policy the presence of advisory bodies is seen as key in
developing MRV and advising government departments charged with applying science into policy and practice. This position is partly
predicated by the institutional context (whether there is a dedicated department in charge of public health and how it is linked with other
departments, the diversity of bodies and organisations involved in setting the agendas and making decisions in PHN, the broader
governance context etc.), the PHN tradition and the historical context. Although the implication for nutrition policy is that there is a
dedicated scientific institution or basis that acts as policy advisor and consequently facilitates development of dedicated national-level
nutrition policies, it raises the issue of the extent to which scientific advisory committees are open, transparent and inclusive in the
process. It appears that there is a considerable divide in terms of the openness and transparency of the process between the countries with
an emerging democracy and those with established and increasingly participatory governance structures; also, in the complexity of the
governance system in charge of developing MRV and hence the extent to which these levels are specifically tailored to national needs. In
those countries with a more developed institutional architecture, scientific advisory bodies appear to be more than just a source of
technical and scientific advice, instead acting as a link between evidence and policy. In particular, the remaining question is to what extent
this model of informing national level of PHN policy can service the policy imperatives and the needs of wider society for the development
of PHN policy that includes the framing of a wider section of society. In addition, the selection of the advisory panel members is
not always clear and could lead to MRV that are eminence rather than evidence based.
Design Desk research based on two data collection strategies: a questionnaire completed by key informants in the field of micronutrient recommendations and a case study that focused on mandatory folic acid (FA) fortification.
Setting Questionnaire-based data were collected across thirty-five European countries. The FA fortification case study was conducted in the UK, Norway, Denmark, Germany, Spain, Czech Republic and Hungary.
Results Varied bodies are responsible for setting micronutrient recommendations, each with different statutory and legal models of operation. Transparency is highest where there are standing scientific advisory committees (SAC). Where the standing SAC is created, the range of expertise and the terms of reference for the SAC are determined by the government. Where there is no dedicated SAC, the impetus for the development of micronutrient recommendations and the associated policies comes from interested specialists in the area. This is typically linked with an ad hoc selection of a problem area to consider, lack of openness and transparency in the decisions and over-reliance on international recommendations.
Conclusions Even when there is consensus about the science behind micronutrient recommendations, there is a range of other influences that will affect decisions about the policy approaches to nutrition-related public health. This indicates the need to document the evidence that is drawn upon in the decisions about nutrition policy related to micronutrient intake.
A, Raats MM (2011) Micronutrient recommendation stakeholders' beliefs on dietary guidelines: a qualitative study across six European countries/regions., European Journal of Clinical Nutrition 65 (7) pp. 872-874 Nature Publishing Group
Research infrastructures (RIs) are essential to advance research on the relationship between food, nutrition, and health. RIs will facilitate innovation and allow insights at the systems level which are required to design (public health) strategies that will address societal challenges more effectively.
In the EuroDISH project we mapped existing RIs in the food and health area in Europe, identified outstanding needs, and synthesised this into a conceptual design of a pan-European DISH-RI. The DISH model was used to describe and structure the research area: Determinants of food choice, Intake of foods and nutrients, Status and functional markers of nutritional health, and Health and disease risk.
The need to develop RIs in the food and health domain clearly emerged from the EuroDISH project. It showed the necessity for a unique interdisciplinary and multi-stakeholder RI that overarches the research domains. A DISH-RI should bring services to the research community that facilitate network and community building and provide access to standardised, interoperable, and innovative data and tools. It should fulfil the scientific needs to connect within and between research domains and make use of current initiatives. Added value can also be created by providing services to policy makers and industry, unlocking data and enabling valorisation of research insights in practice through public-private partnerships. The governance of these services (e.g. ownership) and the centralised and distributed activities of the RI itself (e.g. flexibility, innovation) needs to be organised and aligned with the different interests of public and private partners.
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.
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.
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 d 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
Trial registration: ISRCTN Registry, ISRCTN17396879. Registered on 15 March 2017.
Background: Most food in the UK 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 behaviour.
Objectives: The FLICC study is a pilot randomised controlled trial of a digital behaviour 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.
Methods: The intervention consisted of a website where participants could access tailored feedback on previous purchases of ready meals and pizzas, set goals, model behaviour and practice using traffic light labels. The control consisted of web-based information on traffic light labelling. 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 six months prior to recruitment, during the six week intervention period and during a twelve week wash out period were transferred to the research team by the participating supermarket. Healthiness of ready meal and pizzas was measured using a pre-developed scale based solely on the traffic light colours on the foods. Questionnaires were completed at recruitment, end of intervention and end of wash out to estimate the effect of the intervention on variables that mediate behaviour change (e.g. belief and intention formation).
Results: We recruited 496 participants from an initial email to 50,000 people. Only three people withdrew from the study and purchase data were received for all other participants. 208 participants completed all three 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 = 0.315) or at wash-out (P = 0.594).
Conclusions: Whilst the FLICC study did not find evidence of an impact of the intervention on food purchasing behaviour, 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.
The rise in use of food supplements based on botanical ingredients (herbal supplements) is depicted as part of a trend empowering consumers to manage their day-to-day health needs, which presupposes access to clear and accurate information to make effective choices. Evidence regarding herbal supplement efficacy is extremely variable so recent regulations eliminating unsubstantiated claims about potential effects leave producers able to provide very little information about their products. Medical practitioners are rarely educated about herbal supplements and most users learn about them via word-of-mouth, allowing dangerous misconceptions to thrive, chief among them the assumption that natural products are inherently safe. Print media is prolific among the information channels still able to freely discuss herbal supplements.
This study thematically analyses how 76 newspaper/magazine articles from the UK, Romania and Italy portray the potential risks and benefits of herbal supplements.
Most articles referenced both risks and benefits and were factually accurate but often lacked context and impartiality. More telling was how the risks and benefits were framed in service of a chosen narrative, the paucity of authoritative information allowing journalists leeway to recontextualise herbal supplements in ways that serviced the goals and values of their specific publications and readerships.
Providing sufficient information to empower consumers should not be the responsibility of print media, instead an accessible source of objective information is required.
Methods: A suite of user needs studies was conducted in 4 European countries (Greece, Italy, Slovenia, the UK) prior to the development of PD_Manager, a mHealth-based CDSS designed for Parkinson?s Disease, using wireless technology. Study 1 undertook Hierarchical Task Analysis (HTA) including elicitation of user needs, cognitive demands and perceived risks/benefits (ethical considerations) associated with the proposed CDSS, through structured interviews of prescribing clinicians (N=47). Study 2 carried out computational modelling of prescribing clinicians? (N=12) decision strategies based on social judgment theory. Study 3 was a vignette study of prescribing clinicians? (N=18) willingness to change treatment based on either self-reported symptoms data, devices-generated symptoms data or combinations of both.
Results: Study 1 indicated that system development should move away from the traditional silos of ?motor? and ?non-motor? symptom evaluations and suggest that presenting data on symptoms according to goal-based domains would be the most beneficial approach, the most important being patients? overall Quality of Life (QoL). The computational modelling in Study 2 extrapolated different factor combinations when making judgements about different questions. Study 3 indicated that the clinicians were equally likely to change the care plan based on information about the change in the patient?s condition from the patient?s self-report and the wearable devices.
Conclusions: Based on our approach, we could formulate the following principles of mHealth design: 1) enabling shared decision making between the clinician, patient and the carer; 2) flexibility that accounts for diagnostic and treatment variation among clinicians; 3) monitoring of information integration from multiple sources. Our approach highlighted the central importance of the patient-clinician relationship in clinical decision making and the relevance of theoretical as opposed to algorithm (technology)-based modelling of human judgment.
Young sudden cardiac death (YSCD), often occurring in previously healthy individuals, is a tragic event with devastating impact on affected families, who are at heightened risk of posttraumatic stress and prolonged grief and may themselves be at risk of YSCD. Previous research suggests that surviving family members? psychosocial support needs are often unmet.
This study sought to identify how YSCD-affected families experience dedicated community and peer support in light of their psychosocial support needs.
The study used a qualitative design, employing a thematic analysis of focus group and interview data. Three focus groups and five individual interviews were conducted with affected family members (N = 19). The sample was drawn from a UK-based charity, Cardiac Risk in the Young. Audio-recordings of the focus groups and interviews were transcribed and subjected to thematic analysis.
Three super-ordinate themes were identified: 1. YSCD community support as offering a place of safety, 2. YSCD community support as fostering sense-making, 3. YSCD community support as facilitating finding new meaning.
YSCD-affected families can benefit from access to dedicated community and peer support that offers a safe environment, provides affiliation, understanding and normalisation and enables sense-making and the rebuilding of a sense of self. Dedicated community support can facilitate meaningful re-engagement with life through helping prevent YSCD and through memorialisation and legacy-building to maintain a continuing bond with the deceased. Clinicians need to be aware of the need to incorporate available community and peer support into patient pathways.
Background: mhealth, predominantly wearable technology and mobile apps, have been considered in Parkinson?s Disease to provide valuable ecological data between face to face visits and improve monitoring of motor symptoms remotely.
Objective: In this study we explore 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 the present study as the PD_manager system, to collect clinically meaningful data. We also explore outcomes and disease related factors which are important determinants to establish feasibility. Finally, we further validate a tremor evaluation method with data collected while patients perform their daily activities.
Methods: PD_manager trial was an open label parallel group randomized study. The mheath 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. The 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 UPDRS estimations by clinicians were explored.
Results: There were 65 of the 75 study participants (87%) who completed the protocol. They used the PD_manager system for a median 11.57 days (Std. dev. 3.15). The regression analysis suggests that the main factor associated with high usage was caregivers? burden. Motor Aspects of Experiences of Daily Living and patients? self-rated health status also influence the system?s usage. Our algorithm provided clinically meaningful data for the detection and evaluation of tremor.
Conclusions: We found that PD patients, regardless of their demographics and disease characteristics, used the system for 11-14 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.