Periodic Reporting for period 1 - PREPARED (Pro-active Pandemic Crisis Ethics and Integrity Framework)
Período documentado: 2022-09-01 hasta 2023-10-31
From the earliest phases of the COVID-19 pandemic, it was evident that fast reaction systems, including accelerated research, were likely to face significant ethics and integrity challenges. The ‘Pro-active Pandemic Crisis Ethics and Integrity Framework’ project (PREPARED), is developing an ethics and integrity framework to support rapid and effective research during global crises. With such a framework, it will be possible to safeguard key ethical values and improve overall crisis preparedness. Bringing together 16 partner teams from three continents and 15 high-level advisors from 5 continents, project outputs include:
(i) an interdisciplinary, accessible, and jargon-free code of conduct for research during global crises,
(ii) ‘how to’ guidelines to support the needs of research teams,
(iii) engaging training materials, to be disseminated across the globe and
(iv) support for policy-makers with ethics-driven input on specific policy questions relevant to global crises.
The project co-ordinates an international network of private and public research funders, academics, policymakers, editors and publishers, international organisations, NGOs and citizens to analyse emergent research ethics and integrity challenges during pandemics and other global crises. Three artists are supporting the team to ensure all outputs and training materials are highly engaging.
(i) an interdisciplinary, accessible, and jargon-free code of conduct for research during global crises,
(ii) ‘how to’ guidelines to support the needs of research teams,
(iii) engaging training materials, to be disseminated across the globe and
(iv) support for policy-makers with ethics-driven input on specific policy questions relevant to global crises.
The project co-ordinates an international network of private and public research funders, academics, policymakers, editors and publishers, international organisations, NGOs and citizens to analyse emergent research ethics and integrity challenges during pandemics and other global crises. Three artists are supporting the team to ensure all outputs and training materials are highly engaging.
(WP1) Research ethics and integrity challenges during sudden global crises were identified and analysed in eight languages: English, German, Russian, Mandarin, French, Korean, Hindi and Japanese. Key ‘insider perspectives’ on the broader ethics, social, cultural and economic challenges were identified and analysed for health and social care workers, disabled people, women researchers and marginalized sex workers. Human rights challenges were analysed, supplemented by an assessment of regulatory environments in Europe regarding research integrity. The identified challenges were validated in workshops with experts.
MAIN achievement: 8 language reports, 5 key insider reports, 2 legal instruments reports capturing research ethics and integrity challenges during sudden global crises
(WP2) At the core of PREPARED, lie eight engagement platforms of key stakeholders with common interests (public research funders, private research funders, researchers, citizens & civil society, policy-makers/advisors, publishers and editors, research governance, and NGOs). The platforms were actively engaged in dialogue events and surveys to build a picture of research stakeholder needs in global crisis. Four main needs were identified. Increased collaboration with other stakeholders and the public. Guidelines to establish a coherent crisis response. Tailored training materials to prepare for future crises. Financial and human resource support.
MAIN achievement: establishment of engagement platforms and identification of stakeholder needs.
(WP3) Ethical values motivate action. To ensure that the main output of PREPARED, a global code of conduct, links both to real-world experiences and values, the PREPARED team identified four main ways to determine relevant values for any new moral framework: risk-based, drafter-based, code-based and citizen-based. Whilst PREPARED assembled a global team with representation from marginalised populations, the drafter-based approach was deselected to avoid too narrowly reflecting the values of the research governance community. We also deselected the citizen-based approach, to avoid a proliferation of values. In the code-based approach, which relied on an analysis of initially 236 ethics and integrity guidance documents, the moral values of fairness and solidarity were dominant. A risk-based analysis of the challenges for research ethics and integrity during global crisis established that the four values of the TRUST code (fairness, respect, care and honesty) cover all risks.
MAIN achievement: ensuring a strong link between real-life experiences of research ethics and integrity challenges and ethical values in preparation for the PREPARED code of conduct.
(WP4) The stakeholder needs from publishers and editors included the request for uniform fast-track review procedures for crisis-related manuscripts. The publishing platform has been discussing this topic with a view to providing guidance on such procedures in 2024. The policy meetings to which PREPARED contributed led to the development of a new type of ethics-driven policy brief.
MAIN achievement: policy-brief covered in NATURE (see also below).
(WP5) The main training-related work undertaken in the first 14 months focused on a case study app, which aims to foster broad update of project outputs through engaging training materials to improve overall preparedness for global crises. Illuminative case studies were developed that enable transformative learning and/or provide important information. The work on the training app was supported by the three PREPARED artists (an award-winning animator and illustrator / a film-maker from Cyprus / a film-maker and photographer from Kenya).
MAIN achievement: Launch of app for Android and iPhone.
(WP6) PREPARED is a globally engaged group and the dissemination activities were considerable, please see separate part of this report, with detailed listings.
MAIN achievement: Award-winning artist-produced outputs.
MAIN achievement: 8 language reports, 5 key insider reports, 2 legal instruments reports capturing research ethics and integrity challenges during sudden global crises
(WP2) At the core of PREPARED, lie eight engagement platforms of key stakeholders with common interests (public research funders, private research funders, researchers, citizens & civil society, policy-makers/advisors, publishers and editors, research governance, and NGOs). The platforms were actively engaged in dialogue events and surveys to build a picture of research stakeholder needs in global crisis. Four main needs were identified. Increased collaboration with other stakeholders and the public. Guidelines to establish a coherent crisis response. Tailored training materials to prepare for future crises. Financial and human resource support.
MAIN achievement: establishment of engagement platforms and identification of stakeholder needs.
(WP3) Ethical values motivate action. To ensure that the main output of PREPARED, a global code of conduct, links both to real-world experiences and values, the PREPARED team identified four main ways to determine relevant values for any new moral framework: risk-based, drafter-based, code-based and citizen-based. Whilst PREPARED assembled a global team with representation from marginalised populations, the drafter-based approach was deselected to avoid too narrowly reflecting the values of the research governance community. We also deselected the citizen-based approach, to avoid a proliferation of values. In the code-based approach, which relied on an analysis of initially 236 ethics and integrity guidance documents, the moral values of fairness and solidarity were dominant. A risk-based analysis of the challenges for research ethics and integrity during global crisis established that the four values of the TRUST code (fairness, respect, care and honesty) cover all risks.
MAIN achievement: ensuring a strong link between real-life experiences of research ethics and integrity challenges and ethical values in preparation for the PREPARED code of conduct.
(WP4) The stakeholder needs from publishers and editors included the request for uniform fast-track review procedures for crisis-related manuscripts. The publishing platform has been discussing this topic with a view to providing guidance on such procedures in 2024. The policy meetings to which PREPARED contributed led to the development of a new type of ethics-driven policy brief.
MAIN achievement: policy-brief covered in NATURE (see also below).
(WP5) The main training-related work undertaken in the first 14 months focused on a case study app, which aims to foster broad update of project outputs through engaging training materials to improve overall preparedness for global crises. Illuminative case studies were developed that enable transformative learning and/or provide important information. The work on the training app was supported by the three PREPARED artists (an award-winning animator and illustrator / a film-maker from Cyprus / a film-maker and photographer from Kenya).
MAIN achievement: Launch of app for Android and iPhone.
(WP6) PREPARED is a globally engaged group and the dissemination activities were considerable, please see separate part of this report, with detailed listings.
MAIN achievement: Award-winning artist-produced outputs.
In discussions with other EU ethics project co-ordinators, it became clear that the unique abilities of their teams might not be harnessed by traditional policy briefs. PREPARED developed a new innovative ethics driven policy brief format and issued the first brief using the new methodology in April 2023. The PREPARED brief was covered by NATURE and the methodology was praised as follows:
"The ‘Advocating for a G21’ document is “a good model of how to include ethics in decision-making”, says Katherine Littler, co-lead of the World Health Organization’s Health Ethics and Governance Unit in Geneva, Switzerland." https://www.nature.com/articles/d41586-023-01014-z
See also section below on policy relevance.
"The ‘Advocating for a G21’ document is “a good model of how to include ethics in decision-making”, says Katherine Littler, co-lead of the World Health Organization’s Health Ethics and Governance Unit in Geneva, Switzerland." https://www.nature.com/articles/d41586-023-01014-z
See also section below on policy relevance.