Stakeholder Consensus Conferences - SCC
To all participants,
Thank you for agreeing to take part in the first stakeholder consensus conference as part of the IPerGlio project. IPerGlio is an ambitious project – as a pan-European research project involving partners from Norway, Italy, Luxembourg, Spain and Germany, we aim to identify prognostic markers that will improve the quality of care for glioblastoma patients. And with your help, we will do this in an ethically responsible way that takes into account the perspectives and needs of patients and other stakeholders.
With this conference, we are tackling an important ethical issue: how to publish research data in a public database in a way that is sensitive to and considers the ethical implications of such an endeavour.
By connecting you all online, we are able to bring together a wide range of stakeholders from across Europe. We are incredibly grateful that you have chosen to embark on this journey with us. The project team and I look forward to discussing the opportunities and challenges of IperGlio with you. Most importantly, we look forward to learning from the unique expertise that each of you brings to this virtual table over the coming weeks.
On behalf of the Ethics Team and the IPerGlio Consortium, I would like to thank you.
Yours
Dr Ruben Andreas Sakowsky
What is the Stakeholder Consensus Conference and who are the stakeholders?
StakeholderConsensus Conferences (SCC)
Stakeholder Consensus Conferences (SCCs) are structured meetings where different groups of stakeholders come together to discuss, deliberate and reach consensus on specific topics, strategies or projects. The aim of these conferences is to promote mutual understanding, gather a broad range of perspectives and jointly develop recommendations or decisions that reflect the collective input of all participants.
For us, a stakeholder is anyone who is affected by the issue that the SCC is addressing, or anyone who has an interesting perspective based on their unique experiences that could shed further light on the topic. In this context, the experience of a family member of a glioblastoma patient is just as valuable as that of a doctor. The aim of these conferences is to promote mutual understanding, gather a wide range of perspectives and jointly develop recommendations or decisions that reflect the collective views of all participants.
Expert presentations on the chosen topic are presented to SCC participants so that they can make informed decisions. In our case, these are presentations on the IPerGlio project, the planned public database, and two presentations on the ethical and legal implications of sharing patient data.
After each presentation, participants will have the opportunity to discuss the topic with each other and develop further questions. We believe that open discussions at eye level are the best tool to bring out the different aspects that might be relevant in finding answers to the ethical questions related to the topic. You would be surprised how often participants in deliberative events point out ethical issues that the experts never thought of!
SCCs work best when the topic is as focussed as possible. We realise that with a topic as important as glioblastoma research, there are many, many important questions to discuss. At this SCC, we as the moderation team will try to focus on the real issue – how we can build a public database in an ethically responsible way.
Together with you, we want to create clear guidelines for our database team and a brochure for patients that will provide them with the best possible information.
We look forward to discussing and exchanging ideas with you!
Your team IPerGlio – Germany
