WP3 – Citizen Participation in health and well-being monitoring
Lead FMU. Partners: ISGlobal, IRSN, WIV-ISP, NMBU, CEPN, Ph Pirard (expert)
To develop a tool and protocol for:
- The use of novel technologies (e.g. interactive APP) for communication and dialogue on radiation effects on health;
- The use of an interactive APP to collect information on health, diet, social, and psychological status of participants in order to 1) provide support (medical, advice) to affected populations and information to local mediators and public health authorities; and 2) set-up a citizen-based study, to be run by radiation protection, public health and social scientists in consultation with local stakeholders, with the aim of evaluating health and social consequences of the accident;
- Consideration of the way in which information on dose, can be translated into meaningful information of health risks. Evidence to date suggests that information on short-term and cancer risks to children are more important than lifetime cancer risks.
Task 3.1 Review of existing apps and tools on the monitoring of health and well-being
There is a wealth of validated and translated questionnaires on quality of life, diet, stress, health in general and somatic symptoms. These will be reviewed with the view of adopting simple and short questionnaires that can be adapted for use in a Mobile APP where participants would be asked to provide information at regular intervals.
Task 3.2 Based on consultation from WP1, incorporate communication and dialogue on radiation effects on health within the App or tool
This would involve:
- defining the information and advice that could be useful for different populations in different phases of the accident. This will be supported by focus group discussions and a web-based survey on the best way to translate dose measurements into meaningful health risk data.
- defining ways in which dialogue can be established (real-time monitoring by local physicians or nurses, FAQs and screening of questions, live forums)
- defining mechanisms for reporting specific needs or situations needing intervention (i.e. shortage of stable iodine pills)
Task 3.3 Based on needs identified in WP1 (stakeholder consultation), adapt the tools identified to gather information on health and behaviour of populations exposed to radiation
This would involve:
Anticipation of agreement from pertinent ethical and data protection authorities in order to create an electronic database, and share individual data between different partners.
Data collection on
- Behaviour at time of accident and subsequently (GPS for space time budget) – this would be useful for dose estimation, adaptation of health surveillance as well as to inform authorities in quasi real-time based of possible risks based on the whereabouts of the participants;
- Perception and health complaints and worries of the participants;
- Diet also important for dose estimation, especially in the early phase of an accident;
- Life style, including physical activity;
- Health status including wellbeing.
Data usage, objectives:
- Obtaining support/alerting appropriate medical or social personnel in case of need;
- Conducting a citizen- based health/stress monitoring programme involving voluntary registering to a data base (with very strict data protection) for eventual further health and social follow-up of the population. For this purpose, the tool (APP/Website) would provide:
- information about the study objectives – including goals, limitations, what answers it can and cannot provide, legal and data protection framework;
- possibility of choosing not to share the information for those who do not wish to do so;
- For those who agree to share their information – an electronic informed consent will need to be signed indicating whether participants agree to give:
- permission to link their time and motion data with databases of contamination/doses;
- Permission to link personal identifiers (to be defined) with those in the dosimetry APP (if separate) and existing dose monitoring networks as well as with national / local registries (including hospital discharge, etc) to move from active health surveillance to passive follow-up;
- Permission to link their data across countries, if relevant.
The tool should allow:
- Ongoing analysis methods of the results (e.g. automatic mapping of health other concerns for comparison with dose maps);
- Integration of the programme into public health surveillance programmes when feasible.
Task 3.4 Optimization of tools from WP3 based on feedback by WP1
WP1 will provide feedback on the proposal from 3.2 and 3.3, particularly concerning the adequacy of the proposed tools for stakeholders (citizens, local communicators, authorities), in particular whether the proposed tools meet their needs, whether they are appropriate and easy to use. Stakeholders will also suggest modifications (possible items to remove, change or add). Discussions will also cover whether there are differences in approaches to new technologies and in their cultural acceptance across populations (between countries as well as within countries in different population groups including different age groups). Recommendations will be made on how to modify the tools and approaches in consequence.
Based on this feedback, WP3 will modify its proposals, as needed, and feed them into WP4.