As part of the series of events for MPE’s Year of Action on Diagnosis, we are hosting focus groups with myeloma and AL amyloidosis patients to discuss their experiences and perspectives on the challenges around diagnosis. MPE will use the results to inform the work we do to advocate for equal access to a timely diagnosis for all patients.
If you are interested in discussing your diagnosis experience, please join us (virtually) on Tuesday, June 14 from 10:00 – 12:00 CET.
Please carefully read all the information below before completing the registration form at the bottom of this page and agreeing to the terms of the focus group:
MPE FOCUS GROUP PARTICIPANT INFORMATION:
You are invited to take part in a focus group organised by Myeloma Patients Europe (MPE). The aim of the focus group is to understand the challenges that myeloma and AL amyloidosis patients face in obtaining a diagnosis and the impact of delayed diagnosis on a patient’s quality of life. Before you decide if you want to participate, please read the following information.
Why has this focus group been organised?
MPE is hosting focus groups with myeloma and AL amyloidosis patients from across Europe to understand the challenges in obtaining a diagnosis and the impact of delayed diagnosis on a patient’s quality of life. The focus groups will be comprised of up to 10 patients of various ages from across the countries represented by MPE.
Do I have to take part?
Participating in the focus group is voluntary. If you decide to take part, you must indicate your agreement at the end of this form. You are free to leave the focus group at any point and you do not have to provide a reason for leaving.
What is the aim of the focus group?
The information gathered during the focus group will help MPE to better understand the experiences and perspectives of patients regarding diagnosis and how MPE can best support our members to advocate for a timely diagnosis for all patients.
What does the focus group involve?
You will participate in a 2-hour meeting on June 14, 2022, from 10:00 – 12:00 CET that will be hosted online through Zoom. The meeting will include a short introduction, a 1.5-hour focus group, and a wrap-up. There will be up to 10 patients in the focus group and 1 MPE staff member. The MPE staff member will moderate the focus group, asking participants a series of questions related to their experience with their diagnosis, as well as take notes, collect data, and provide technical support for participants when needed.
Will the focus group be recorded?
The session will be video recorded to ensure accurate data collection. The recordings will only be available to MPE staff and a contracted transcriber and will be destroyed after the notes are prepared. Participants may choose to use a pseudonym to keep their real name from being displayed and recorded and may keep their cameras off to conceal their faces. Participants may choose to change their displayed name at any time during the focus group and may choose to turn off their camera at any time during the focus group.
Will my taking part in this focus group be kept confidential?
Yes, MPE will not name or list the focus group participants publicly and only MPE staff and the contracted transcriber will have access to the recordings.
Why should I take part in the focus group?
MPE uses a patient-centred approach and prioritizes the most pressing needs of the patient community when making decisions about research projects, programme expansion and development, and resource allocation. Your experiences are important for MPE and the broader patient community. There is still much to learn to know how best to support patients and improve diagnosis and your insights will help us in our programme planning and advocacy strategy.
What will happen to the results of the focus group?
The results will be used internally by MPE to inform the work we do to advocate for equal access to a timely diagnosis, programme planning and resource allocation. MPE will also produce a public report of the findings to be shared on the first-ever European Myeloma Day, which will be hosted on the 27th of September 2022. Any insights shared publicly will be anonymised and no quotes will be attributed to patients without their consent. MPE may follow up with individual participants to schedule additional one-on-one interviews to gain further insights. Participation in any subsequent calls or communication following the focus group is voluntary.
MPE FOCUS GROUP CONSENT FORM:
- I confirm that I have read and understand the information above. I have had the opportunity to consider the information, ask questions and have had these answered satisfactorily. (All questions can be sent to ).
- I understand that my participation is voluntary and that I am free to withdraw at any time, without giving any reason.
- I understand that my participation in this focus group will be confidential.
- I understand that anonymised data may be shared publicly.
- I understand that if some of my views are quoted in a report or otherwise published, this will be done anonymously unless I consent to be identified.
- I understand that my views will be video recorded for the purpose of the focus group and made available only to the MPE staff and a contracted transcriber preparing the report.
- I agree to take part in the focus group.
Yes, I would like to register for the Patient Focus Group on myeloma and AL amyloidosis diagnosis on June 14, 2022, from 10:00 – 12:00 CET