You are being invited to participate in this project due to your role in the field and/or previous contribution to the debate on add-ons. The workshops will primarily focus on generating proposals to improve the quality of information on add-ons. Ask us questions if there is anything that is not clear or if you would like more information.
This project aims to involve a group of key stakeholders as equal partners in co-designing a series of practice- and policy-oriented proposals. These proposals will address the primary challenges related to providing information on fertility add-ons and supporting patients in making informed choices within a sector that has limited evidence.
The outcomes of this project have potential crucial implications for policymakers and IVF practitioners, particularly in a field where conclusive evidence is challenging to produce rapidly. By enhancing the quality of information on add-ons, this project aims to empower patients in making informed choices. Additionally, it seeks to integrate patients’ and professionals’ priorities and needs into policy and practice frameworks.
Considering the sensitivity of the field, several risk mitigation strategies have been put in place to address potential ethical concerns. Given the sensitive nature of infertility, it is essential to minimise any potential distress to participants. To mitigate this risk, in the workshops no questions regarding the experience of infertility are asked. All participants will be free to contribute to the discussions in any way they wish. Participants can withdraw their participation in the project at any time without providing a reason.
In addition, to protect confidentiality and privacy protection several measures have been implemented. The workshops will be held online through a secure platform (Zoom). The workshops will not be recorded. Instead, a researcher will take notes during the discussions, ensuring that no personal or sensitive information is included.
Any information provided during the workshops will be stored in fully anonymised format in a secure database called Sharepoint, following the data storage guidelines provided by Queen Mary University of London (QMUL). Only Dr Perrotta and her team will be able to access the notes. Anonymised excerpts from the notes may be used in various research outputs, such as research insights, policy briefs, reports, presentations, and publications, to support the dissemination of findings. The data will be retained for a period of 5 years, aligning with QMUL’s guidelines for data storage.
Under what legal basis are you collecting this information?
Queen Mary University of London processes personal data for research purposes in accordance with the lawful basis of ‘public task’.
Please read Queen Mary’s privacy notice for research participants containing important information about your personal data and your rights in this respect. If you have any questions relating to data protection, please contact Queen Mary’s Data Protection Officer, Queens’ Building, Mile End Road, London, E1 4NS or data-protection@qmul.ac.uk or 020 7882 7596.
If you have any concerns about the manner in which the study was conducted, in the first instance, please contact the researcher(s) responsible for the study Dr Manuela Perrotta. If you have a complaint which you feel you cannot discuss with the researchers then you should contact the Research Ethics Facilitators by e-mail: research-ethics@qmul.ac.uk. When contacting the Research Ethics Facilitators, please provide details of the study title, description of the study and QMERC reference number (where possible), the researcher(s) involved, and details of the complaint you wish to make.
Who can I contact if I have any questions about this study?
Dr Manuela Perrotta: m.perrotta@qmul.uk
PIS – v.1 14/06/2023
DSREC Reference Number: DSREC39