The ConcePTION project is building much-needed knowledge for women and health care professionals. To achieve our goal of building an ecosystem for medicine safety in pregnancy and breastfeeding, we need to engage with women, their partners, their doctors, pharmacists, midwives and nurses, the companies that develop medicines and the authorities that approve them and decide what becomes available to patients. Our goal is to work in an open and inclusive way, with the spirit of mutual respect and trust. We have developed ten principles to ensure we conduct our engagement activities in an ethical way.
During the course of the project, we will engage a wide range of groups to understand what information they need, if there are any ethical issues that need to be addressed. We uphold these principles and share them with stakeholders we invite to meetings and discussions. The principles include:
- Open, transparent and trustworthy
We will always be open, transparent and trustworthy, providing information so that the people we invite can participate in a meaningful way, and we will foster a culture of sharing ideas. We will embrace and include conflicting interests and opinions and see how they can be addressed and balanced. Constructive and factual criticism will be encouraged.
We will make sure that we include a representative from each and all of those groups potentially interested or affected by the area we are investigating. This will include making sure that we include pregnant and breastfeeding women and members of the public who might be harder to reach (such as minority groups, those with a lower health literacy or those who may not be as vocal as other groups).
- Responsive and reciprocal
We will ensure that our activities are a two-way process that will allow us to appreciate the benefits of learning from those we engage with.
We will respect and use the input we receive to improve medical knowledge, policy and health outcomes. We will actively listen to and understand the needs of individuals and the groups they represent, including indications on how they want to be engaged, based on their circumstances. We will value everyone’s rights and respect their privacy, guaranteeing the confidentiality of the information they provide to us.
- Purposeful and well-prepared
We will always be purposeful, well-prepared and coordinated within our project teams before we invite people to participate in one of our engagement activities, such as a survey, an interview, an online discussion or a meeting. The people we consult with or invite to our engagement activities will always be clear about the purpose of the engagement, our desired outcome and how we will use the information we obtain from others. Our purpose will be confirmed with participants at the start of every engagement activity.
- Neutral, objective and free of conflict of interest
We will ensure that all of the information that we provide or present during the meeting, and the way we conduct our engagement, is accessible, neutral, balanced and objective, free of any conflicting interests and that we facilitate the involvement of all of the people we have invited.
- Conscious of the need for clear communication
We will also make sure that our materials and our communication style are clear, tailored to the people we invite, to make sure that everyone will understand the content and be able to provide their input.
We will make sure that the total number of hours that we need from our participants is reasonable and proportionate to the possible burdens and benefits from interacting with us. We will endeavour to communicate the expected extent of the activity in advance.
We will seek never to undermine or interfere with the existing relationships that pregnant and breastfeeding women have with their health professionals or the treatment guidance they are following from them.
- Impactful and sustainable
We will aim for our engagement activities to have a tangible impact and benefit for each group we consult with and for society as a whole. Our impacts should enable patients, healthcare professionals, researchers and regulatory authorities to continuously work together in sustainable ways. All participants involved should be satisfied with the outcomes resulting from engaging with us.
We share and uphold these principles with stakeholders we invite to meetings and discussions.