This is called a “Participant Information Sheet For Patients”. It has been approved by the University College Of London (UCL) Research Ethics Committee Approval ID Number: 5718

Title of Study: Exploring Access to Prescription Medicines Online and Via Home Delivery Department: Research Department of Practice & Policy
Name and Contact Details of the Researcher(s):
Oksana Pyzik o.pyzik@ucl.ac.uk, Mike Isles mike.isles@asop.eu
Name and Contact Details of the Principal Researcher: Oksana Pyzik o.pyzik@ucl.ac.uk

You are being invited to take part in a research project about access to prescription medicines online and home delivery. Before you decide whether to participate, it is important that you understand why this research is being done and what taking part will involve.

The OnHOME Alliance is collaborating with University College London, School of Pharmacy to gather important feedback from patient organisation members across Europe. By completing a short survey with 12 questions, you will help patient organisations advocate for changes in legislation that aim to provide patients throughout the EU with equal access to prescription medicines online. This will support to better understand patient preferences across Europe.

Please take your time to read the following information carefully and discuss it with others if you wish. If anything is unclear or if you would like more information, please do not hesitate to ask by contacting Mike Isles mike.isles@asop.eu or Oksana Pyzik o.pyzik@ucl.ac.uk. It is entirely your choice whether or not to take part. Thank you for taking the time to read this.

The purpose of this research project is to gather patient views on access to prescription medicines online and home delivery services across Europe. Currently, while some EU Member States allow patients to order prescription medicines online and have them delivered to their homes, many others do not. The survey aims to collect data patient preferences for medicines access—especially those with chronic conditions, mobility challenges, or living in rural areas.

This project aims to:

• Understand patient experiences and preferences regarding obtaining prescription medicines online
• Identify barriers and facilitators to online access across different EU countries
• Support patient organisations understand patient preferences for online pharmacies and home deliveries.

The survey will take only a few minutes to complete. The research project is expected to run over a period of approximately 6 months, including data collection, analysis, and reporting of findings. If at any point in the survey you feel distressed please seek help from your GP or via the following link https://www.nhs.uk/nhs-services/mental-health-services/

You have been invited to participate in this study because you are a member of a patient organisation within the European Union. The study aims to hear directly from patients like you about your views and experiences regarding access to prescription medicines online and home delivery.

Inclusion criteria:

• Adults aged 18 years or older
• Patient or carer based in the UK or an EU Member States
• Able to understand and complete the survey in one of the provided languages

Exclusion criteria:

• Individuals under 18 years of age.
• Those unable to provide informed consent or complete the survey.

We plan to recruit approximately 500 to 1,000 participants across multiple patient organisations throughout Europe to ensure a broad and representative range of patient perspectives.

It is up to you to decide whether or not to take part. If you decide to take part, you will be given this information sheet to keep (and asked to sign a consent form, if applicable). You can withdraw from the study at any time without giving a reason and without it affecting any benefits to which you are entitled.

If you choose to withdraw, we will ask what you would like us to do with any data you have already provided.

If you agree to take part in this research, you will be asked to complete a short online survey consisting of 12 questions. The survey will take approximately 5–10 minutes to complete. The survey link will be delivered via an online platform (Qualtrics). You will answer questions about your experiences and views regarding accessing prescription medicines online and home delivery services.

Participation details:

• This is a one-time survey — there are no further visits or follow-ups required. You will not need to travel or attend any in-person appointments.
• No biological samples or personal tissue will be collected.
• No personal identifying information will be collected unless you choose to provide your email at the end of the survey if you want to receive a summary report of the results. Even then, your survey responses will remain anonymous and separate from your email.
• Consent will be obtained electronically at the start of the survey. By continuing and submitting your responses, you confirm your consent to participate.
• You can withdraw from the survey at any time before submitting your responses.

You will not be audio- or video-recorded as part of this research. The study only involves completing an anonymous online survey. No interviews, photographs, or recordings of any kind will be taken or stored. All survey responses will be recorded digitally through the survey platform (Qualtrics) in a secure, anonymised format and used solely for research analysis.

There are no significant risks associated with taking part in this research. The survey is short and anonymous, and you are not required to provide any identifying personal information.

However, some participants may find it frustrating or upsetting to reflect on challenges they have experienced in accessing prescription medicines. If you do feel uncomfortable at any point, you may stop completing the survey and exit at any time without explanation.

Whilst there are no immediate personal benefits for those participating in the project, it is hoped that your contribution will help inform policy discussions and support patient organisations in advocating for fairer, more equitable access to prescription medicines across the EU.

By sharing your views and experiences, you will be helping to ensure that the voices of patients are heard in shaping future healthcare policies related to online access and home delivery of medicines.

We do not anticipate any risks or issues as a result of taking part in this research. However, if you have a concern or complaint about any aspect of your participation, you are encouraged to contact the Principal Researcher in the first instance: Oksana Pyzik, University College London, School of Pharmacy, Email: o.pyzik@ucl.ac.uk

If you feel that your complaint has not been handled to your satisfaction, you may contact the Chair of the UCL Research Ethics Committee at: ethics@ucl.ac.uk

This ensures that your concerns will be taken seriously and reviewed independently.

All the information that we collect about you during the course of the research will be kept strictly confidential. You will not be able to be identified in any ensuing reports or publications. The survey is fully anonymous, and you will not be asked to provide your name, address, or any identifying personal information. Your responses will be stored securely on the University College London (UCL) approved Qualtrics survey platform, and only members of the research team will have access to the anonymised data. No identifiable data will be shared with any third party. We are committed to handling your data in accordance with UK data protection legislation (including the UK GDPR and Data Protection Act 2018) and UCL’s policies on information security and research ethics.

Please note that assurances on confidentiality will be strictly adhered to unless evidence of wrongdoing or potential harm is uncovered. In such cases the University may be obliged to contact relevant statutory bodies/agencies.

No deception will be used in this study. You will be fully informed about the purpose of the research, what your participation involves, and how your responses will be used prior to taking part. You will have the opportunity to make an informed decision about whether to participate. There will be no withholding of information or misleading elements in this study.

The findings from this research will be analysed and may be shared in academic publications, policy reports, presentations, and through the networks of the OnHOME Alliance and University College London (UCL). The results may also be used to advocate for greater patient access to prescription medicines across the EU, helping inform policy and legislative change.

You will not be personally identified in any report or publication. All results will be reported anonymously and in aggregated form.

If you would like to receive a copy of the results, you will have the option to provide your email address at the end of the survey. Your contact details will be stored separately from your survey responses to maintain confidentiality.

The anonymised data collected may also be used in future research to further explore patient access to medicines online, subject to appropriate ethical approval and in accordance with data protection legislation.

The controller for this project will be University College London (UCL). The UCL Data Protection Officer provides oversight of UCL activities involving the processing of personal data, and can be contacted at data-protection@ucl.ac.uk.

This ‘local’ privacy notice sets out the information that applies to this particular study. Further information on how UCL uses participant information can be found in our ‘general’ privacy notice:

For participants in health and care research studies, click here.

The information that is required to be provided to participants under data protection legislation (GDPR and DPA 2018) is provided across both the ‘local’ and ‘general’ privacy notices.

The categories of personal data used will be as follows:

The lawful basis that would be used to process your personal data will be performance of a task in the public interest.

The lawful basis used to process special category personal data will be for scientific and historical research or statistical purposes.

Your personal data will be processed so long as it is required for the research project, approximately 6 months. The personal data will be anonymous, and will endeavour to minimise the processing of personal data wherever possible.

If you are concerned about how your personal data is being processed, or if you would like to contact us about your rights, please contact UCL in the first instance at data- protection@ucl.ac.uk.

Detail any intended recipients of personal data if not explained elsewhere, and also advise if any personal data will be transferred outside the EEA, and if so to where.

UCL School of Pharmacy and Alliance for Safe Online Pharmacy EU (ASOP EU) are co-organising the research and there is no associated funding for the project.

If you have any questions or need more information about this research project, please feel free to contact: Oksana Pyzik, Associate Professor, Pharmacy Practice & Policy University College London, School of Pharmacy Email: o.pyzik@ucl.ac.uk

You will be given a copy of this information sheet to keep for your reference.

Thank you for reading this information sheet and for considering to take part in this research study.