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WP1 - Stakeholder needs (consultation, engagement and feedback on proposals)

Lead: ISGlobal, Partners: WIV-ISP, NMBU, CEPN, ISS, IRSN, Experts: V. Chumak, Ph. Pirard, N. Novikava

The need for information and the implication of different segments of society after a disaster is an important issue to address, since people have many different information needs and different degrees of scientific literacy. Exposed populations need to know where and when they can receive assistance or answers to their questions, the primary question being “will they be alright living where they are?”. On the other hand, decision makers can use this information when evaluating the needs of the population and in addition they need information regarding the degree of relevance of the potentially implemented systems to manage the consequences of the accident.
 
In the early phase, there is an important and very diverse need for information exchange about:
  • Radiation contamination levels, areas of exposure, behaviours to decrease exposure risk, and the health consequences of radiation exposure;
  • Social issues, such as where to meet families, access medical care and social facilities;
  • Actions taken and planned, such as evacuation zones and routes;
  • The benefits and organisation of providing personalised information for census-taking.
In the long term, there will be a need for exchange of information on local contamination, food contamination, health monitoring results, local decisions particularly in relation to lifting of evacuation orders and return of populations to their homes.

Objective: The objective of this WP is to engage stakeholders (in particular representatives of local populations, teachers, medical personnel as well as local and national authorities) to identify their needs in the immediate and long-term phases of an accident and propose a tool (or framework for a tool) using new information technologies to optimize interactions between technical capacities offered by the applications, citizens and expert resources.

Approach: This will require the following actions:

Task 1.1. Stakeholder meeting and consultation to identify unmet needs

Building on previous experience acquired along the SHAMISEN project, we will:
  • Identify relevant stakeholders for the purpose of SHAMISEN-SINGS;
  • Launch an online consultation process via the development of the most adequate platforms (blogs, online discussions);
  • Collect information about the needs of residents/evacuees using interview data from narrative experience in the Fukushima accident;
  • Organize a meeting with key stakeholders (including actors involved in Fukushima citizen participation activities).
 Some of the issues that are relevant to the development of the APPs or tools and that will be discussed with the stakeholders are:
  • Possible gathering of personal continuous measurements of ambient radioactivity and inputting in cartographies (WP2), allowing (if methodologically reliable and relevant) cumulative doses assessment, comparisons of results, time and space monitoring of results.
  • Possibilities with GPS of space-time budget monitoring and localisation
  • Possibilities for bottom up gathering of concerns and issues for experts or management teams, and adapted answers for exposed persons from chatbot or expert teams
  • Possibilities for top down personally adapted radioprotection or social issues recommendations
  • Possibilities of voluntary registering information and data from exposed persons (time-space budget, daily intake of fresh local vegetable or milk or relevant food staff, contact data, time of stable iodine tablet consumption... ) and keeping them in protected databases for possible future exposure assessment and health/epidemiological monitoring .
  • Possibilities of quick training on radiological issues or stress management issues.
  • Possibilities of health measures (peritraumatic reactions intensity, stress, depression)
  • Possibilities for alerting in case of any health problem (e.g. medical pills shortage ..)
Task 1.2. Focus group assessment of proposals (from WP2 and WP3) by stakeholders 

A focus group meeting will be held in the second half of the project’s life to present and discuss the deliverables of WP2 and WP3 (requirements and specificities for dose measurement APPs and devices, and for health and well-being monitoring) in to determine if they correspond to the needs specified during task 1.1. An important issue to take into consideration is whether these APPs or tools are accepted by different age groups and cultures, or whether different approaches are needed for different populations. Advice will be provided on this. Another important issue is whether they are cheap to produce and easy to use.

Task 1.3 SHAMISEN-SINGS Consensus Workshop (Lead NMBU)

A two-day consensus workshop will be arranged in Oslo to address the societal, ethical and technical challenges with APP development and use, as well as its contribution to Citizen Science. This will have a multidisciplinary international participation, including ethicists, social scientists and philosophers as well as representatives of affected populations (Norway, Fukushima). The aim will be to stimulate co-reflexion between social scientists, natural scientists and publics. During the conference, work will aim at discussing issues, and drafting areas of consensus (as well as disensus and reasons therefore). A publically available report will be can be produced shortly after. The set up will follow previous consensus workshops arranged by NMBU/CERAD. For example, on debates on whether or not ionising radiation is harmful to wildlife [21,22]. This kind of output has a higher potential of impacting policy than a standard stakeholder meeting.

WP2 – Citizen participation in radiation measurements.

Lead: ISS; Partners FMU, IRSN, UAB, ISGlobal; Expert: V. Chumak

Experiences after the Chernobyl and Fukushima accidents have clearly shown that self-made measurement of radiation can create opportunities for providing information to individuals and empowering them to take an active role in their own radiation protection decisions, thus regaining control on their lives. It also facilitates comprehension of individual exposure and official limits. The use of these technologies should then be encouraged, but minimum standards of quality and reliability should be fostered and the misuse should be avoided. At the same time, the data collected by general public can be used to compare and integrate the data from conventional off-site monitoring and modeling tools. The self-measurement process so become part of the necessary actions that are to be taken to find again the trust in the information given by the RP authorities and the technical experts. In addition, both in Chernobyl and Fukushima (and before – in A-bomb survivor case) reconstruction of individual doses and estimation of group doses was based on surveys of affected populations to reconstruct their whereabouts (locations, migration routes, stay in- or outdoors, administration of stable iodine and application of other countermeasures). With modern technologies most of this data can be collected automatically, using mobile devices and appropriate APPs.

Objectives: To improve the usage of plug-in devices and apps able to turn smartphones, tablets and other smart devices in radiation detectors for self-made measurements by different sectors of the population and to provide the collection and feed of data, essential for dose reconstruction.

 Approach: This will require the following actions:

Task 2.1 Critical review of existing plug-in’s and apps to turn smart devices in radiation detectors

The last years have seen a wide development of plug-in devices or apps able to turn the smartphones (in particular through the buit-in telecameras) into radiation detectors. Some devices/apps are already available for sale or patented. The plug-in devices are diodes, Geiger counters, scintillators and can consequently detect external radiation as counts or dose rate. Other devices are under development, e.g. spectrometry of radioisotopes or measurements of iodine in thyroid, but these are for professional use (e.g. for rescues personnel), so they use sophisticated technologies and are costly. The quality, accuracy, reproducibility and limitation of these technologies is expected to be greatly variable, especially if they are used in real situations.  

In this project, it is planned to review plug-in devices and apps available for sale or under prototyping. For some technologies, that will be identified in the review, measurement testing in reference irradiation conditions in the laboratory will be performed in order to evaluate the performances.  

Task 2.2 Improvement of the appropriateness (accuracy, robustness and user friendliness) of self-measurement connected devices and the integration of citizen measurements into existing monitoring networks at the national and European level

Once the available technologies are reviewed and, where feasible, tested under in-lab conditions (Task 2.1), these must be tested in the real life, i.e. how they are perceived, used and understood by public and how they can be integrated in the decision support systems.

This would involve: 
  • reducing the impact of the human factor which is one of the main sources of uncertainty in the self-made measurements by untrained population. A good training/education (for instance by video tutorials) to the use of technologies can improve the measurement quality.
  • evaluating the feasibility of defining minimum criteria of performance that mobile apps and plug-ins should comply to. Such an approach would guarantee a minimum quality level for all plug-ins and apps, whether provided by institutional or independent developers.
  • evaluating proposals/recommendations on how citizen measurements data could be integrated and matched into off-site environmental monitoring networks at the national and European level;
    • measurement data of ambient dose using APPs will be integrated on Google map
    • to share the dose information on website with citizens and comments from stakeholders
Task 2.3 Based on needs learnt from WP1 (stakeholder consultation), improve or develop interactive platforms or tools for communication and dialogue on radiation measurements and results

This task will be focused at defining the concepts of an app to provide an information on radiation exposure that is at the same time rigorous and understandable by all segments of society.

This would involve:
  • defining the information on radiation measurements which can foster the understanding of the meaning of official dose limits, in all phases
  • adapt the type of information to the specific needs in different phases and segments of population
  • define how to complement information on self-made measurements with communication on internal contamination, also by defining criteria for collection and recording of the internal dosimetry results in databases and for the reporting of these results to the people measured and to the stakeholders.
  • include information on which types of food products are more dangerous because of a higher concentration of radionuclides and how to deal with them.
Task 2.4 Optimization of proposals based on WP1 feedback

WP1 will provide feedback on the proposal from 2.3 and 2.4, 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, WP2 will modify its proposals, as needed, and feed them into WP4.

WP3 – Citizen Participation in health and well-being monitoring

Lead FMU. Partners: ISGlobal, IRSN, WIV-ISP, NMBU, CEPN, Ph Pirard (expert)

Objectives:
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.

WP4 - Concept and specifications of App(s) and/or tools

Lead: WIV-ISP; Partners: IRSN, ISGlobal, ISS, experts: V. Chumak, Ph. Pirard, O. Bondarenko)

Task 4.1  Development of guidelines/concept for apps and tools
  • Based on the input of WP 1 and 2, the guidelines/concept for dose measurement apps and tools will be developed. Special attention will be given to data integration and data visualization, to provide quasi real-time feedback to the users.
  • Based on the input of WP1 and 3, the guidelines/concept for health and well-being monitoring apps/tools will be elaborated. Special attention will be given to conceptualize user-friendly tools in order to track people and obtain information from them over longer periods as well as to provide support to the users. As such, data integration will be primordial.
  • Wherever feasible, the system should contribute significantly to the implementation of the BSS requests as far as information of public and to increase effectiveness of the protective actions
  • Further building on Task 4.1, the specifications (including tutorials) for the App(s) or tools will be developed. To this purpose, a workshop will be organized in Brussels by WIV-ISP;
  • Depending on the feasibility as outlined by the previous WP’s, a demonstration/prototype App will be developed for some of the outcomes (feedback, data collection on space-time, diet, stress, health concerns);
Task 4.2 Development of specifications (including tutorials) for the App(s) or tools, or if feasible, development of demonstration/prototype App

Task 4.3 Development of database management plan

A major issue will be the need for support and maintenance of the APP in the future and recommendations will be made for this. The characteristics of the infrastructure for storing and managing the collected data will also be described. Given the vast quantities of sensitive data that will be collected, data storage and protection is a major issue in this project. A Data Management Plan will be developed in WP4.

Task 4.4 Economic evaluation of the proposed approach

An economic evaluation of the proposed approach will be performed. The resulting strategy could be considered as a public health intervention. As know and suggested also by National Institute for Health and Clinical Excellence (NICE, 1), economic evaluations of public health interventions are to be treated appropriately in terms of determining their cost-effectiveness.  It would be ideal to compare costs and benefits of the proposed approach with the approaches adopted for the Chernobyl and Fukushima events.

As far as costs are concerned, it is quite straightforward to estimate costs of the proposed strategy. They include (but are not limited to): apps development; datasets access needed to use the app; storage of the collected information; citizen training for the use of the apps both for technical issues and for information interpretation to avoid unnecessary anxiety; other costs to be included during the project

Considering benefits will be more challenging. The evaluation will focus on the benefits of: involving the citizen in this process (improves spirit of cooperation and trust between governmental agencies and the public benefit); using “smart” technologies to reach citizens more promptly; using “smart” technologies to overcome language barriers using pictures, videos, etc.; Other benefits that will be identified during the project.

Furthermore, an attempt will also be made to estimate the benefits for different subpopulations, for example different age groups and social classes that might have a different probability of accessing new technologies.