Who can sign up to take part in Patients First?
Anyone who has used cannabis for medical use in the past can sign up to ‘Patient First’. Or, someone who is a carer for someone who has or currently uses cannabis for medical use.
Who can take part? What experience do they need to have?
Anyone who has used cannabis for medical use in the past three months can sign up to ‘Patient First’.
What information will you want to know?
The focus groups will explore a range of relevant medical cannabis subjects. The discussion points and questions will be outlined prior to the session with all selected attendees. Patients will only be asked to disclose information and answer questions they are comfortable with and have agreed in advance.
What personal details do I need to give? For example, name/address/age etc
To register on the database you will need to provide: name/contact details (email or phone number)/date of birth. You will also need to answer some basic questions about your medical cannabis use in order to delegate you to relevant focus groups. These will include: longevity of use, frequency use, type of use (illicit/prescribed), type of product prescribed, clinic prescribed from, administration form, condition prescribed for.
Can I take part without giving away any personal details? I.e be anonymous
You may use a pseudonym instead of your real name if you would prefer. However, you will still need valid contact details so we can get in touch with you.
Where will any information I give be held?
Information will be held on a secure database which only Volteface has access to. No additional groups will be able to access this database or your personal information.
Will it be shared with third parties? If so, who?
The database will not be shared with any third parties, meaning no personal data will be shared. When you attend the focus group, the session will be recorded and shared with the client. However, your identity will remain anonymous.
How will any information I give be used? I.e what is the aim of the focus group?
The aim of this initiative is to provide patients with a voice and be heard by medical cannabis industry groups. Focus groups will differ in precise aims and objectives, but will largely be looking to better understand the patient experience around medical cannabis, either specific to a condition or a product.
Your input is extremely valuable as a patient, providing companies with a rich understanding of your first-hand experience. Your input will help to improve their services, through a patient-centred approach.
What will the focus group be made up of? What sort of people are you wanting to take part? I.e all patients?
The focus group participants will all be medical cannabis patients. The session will be moderated by a Volteface staff member.
How many people will be in the focus group?
Group size will vary but it will range from 5 to 10 participants
What will the focus group entail - what will actually happen on the day?
The focus group will take place over Zoom and will last approximately 1.5 hours. Ahead of the focus group you will receive instructions and details for joining the meeting. Attendees of the focus group will be asked a series of questions which will be discussed as a group. The group will have 5-10 people in attendance and everyone will be given an opportunity to take part in the discussion. Once the focus group has finished all participants will be paid for their time.
Who will be facilitating the group? How many people/members of staff will be involved on the day?
1 to 2 members of the Volteface team will be facilitating the focus group.
Will there just be one focus group session or will I be invited to multiple meetings/forums?
We will match your personal information (i.e. age, length of using cannabis and medical condition) to the inclusion criteria for focus group sessions. It is likely that you will be invited to multiple meetings but this will depend on the inclusion criteria. Whenever an opportunity arises we will contact you via the information you have provided.
How much of my time do I need to commit to take part?
Focus groups will be 1.5 hours in length, so depending on how many you are invited to participate in, the amount of time will vary.
Can I take part virtually or answer questions online rather than face to face?
For logistics and comfort, focus groups will take place virtually.
Can I opt out (or in) of the process at any time?
Absolutely, you can request to be taken off the database or added back in.
How do I sign up to take part?
You can sign up by clicking this link.
Is there a deadline for signing up?
No, you can sign up at any time. However, signing up as soon as possible will ensure a greater chance of being chosen for a focus group at an earlier date.
Once I agree to take part, what will happen next? Who will be in touch/when etc?
Once you sign up online providing all the necessary information, you will receive an email confirming your spot on the database and explaining next steps. When a focus group participation opportunity arises you will be contacted about what to do next.
What do you hope to achieve?
The Patients First initiative is aiming to build a patient focused medical cannabis industry where companies put patients views, perspectives and experiences first. We are looking for the insights collected from focus groups to guide the industry in a more sustainable manner, giving patients a voice and say in the direction the cannabis sector should move. Largely this initiative is looking to bridge the gap between the industry and patients.
How do you know people aren’t vulnerable/you’re not taking advantage of patients?
All patients will be vetted prior to attending the session and sign our consent form to ensure they are fully aware of the process. Our screening interview involves a safeguarding discussion to identify factors or attributes which might mean that attending the group is detrimental to the individual’s wellbeing and health.
How can you be sure you’re getting accurate information?
Our screening interview ensures that patients are a legitimate medical cannabis patient and in a position to provide accurate and relevant information.
Who are you sharing the information with - what is their aim/background?
No personal or identifiable information from patients will be shared to a third party group (all of this will be kept secure on the database). Data from the focus groups will be shared with medical cannabis companies. The purpose of this information sharing is for companies to have a better idea of the patient experience and what patients are looking for, in order to improve their services from a patients perspective. Thus, patient contribution to this initiative is aiming to improve patients experiences with medical cannabis.
How many patients are going to be involved? Will you be speaking to enough of a cross-section to get accurate feedback?
We are aiming to build as large of a database of patients as possible. The selection process for focus groups will take into account demographic factors.
Were there any incentives for patients to sign up and take part? (i.e financial)
Yes, patients will be paid £50 for their participation in a 1.5 hour focus group.
How are you handling any data/information given?
Personal information and data will be stored on a secure database which will be kept confidential. No identifiable information will be passed onto any third parties. Anonymity of focus groups will be ensured through the use of pseudonyms instead of real names and only providing an audio recording to third parties (i.e. no video). Qualitative data from the focus group will be used for market research purposes and analysed. However, focus group discussions will be anonymised.
How did you approach/contact patients? Where did you find the right people to take part?
We will be doing a public call out across our social media channels to reach out to the UK cannabis community.
Why has Volteface chosen to partner with Maple Tree on this initiative?
Volteface is an advocacy organisation which campaigns to reduce the harms of the UK’s drug policy. Volteface is passionate about the needs of patients and believes that it is vital the cannabis industry engages with them and, most importantly, rewards them financially for doing so.
Maple Tree Consultants are industry experts who have a wide range of clients who require patient engagement. Volteface is the perfect partner to ensure that industry engagement is ethical, considered and a positive experience for the patient community.