EMPOWERING MYELOMA ADVOCACY ACROSS EUROPE


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MPE is hosting focus groups with patients and carers to discuss the patient experience during the COVID-19 pandemic across Europe and how MPE can best support our members to meet the community’s needs. A report detailing the results of the focus groups will be shared with our members.

Please carefully read all of the information below before completing the registration form at the bottom of this page and agreeing to the terms of the focus group:

 

MPE COVID-19 FOCUS GROUP PARTICIPANT INFORMATION:

You are being invited to take part in a focus group organized by Myeloma Patients Europe (MPE). The aim of the focus group is to discuss what patients have experienced during the COVID-19 pandemic. Before you decide if you want to participate, please read the following information.

 

Why has this focus group been organised?

MPE is hosting a focus group with myeloma and AL amyloidosis patients and carers from across Europe to understand how patients have been affected by COVID-19. The focus group will be comprised of up to 10 patients and carers 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 needs of patients and how MPE can best support our members to meet those needs through resources, education, and advocacy.

 

What does the focus group involve?

You will participate in a 2-hour meeting on March 18, 2021 or March 23, 2021 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 and carers in the focus group as well as up to 3 MPE staff members. An MPE staff member will moderate the focus group, asking participants a series of questions related to their experience with COVID-19, while the other staff member(s) 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 in order to keep their real name from being displayed and recorded and may keep their cameras off in order to conceal their face. Participants may choose to change their displayed name at any time during the focus group and may choose to turn off their camera at anytime 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 programme expansion and development as well as 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 during this pandemic and your insights will help us in our programme planning.

 

What will happen to the results of the focus group?

The results will be used internally by MPE to inform programme planning and resource allocation. MPE will also produce a public report of the findings to be shared online. 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:

 

  1. 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 info@mpeurope.org).
  2. I understand that my participation is voluntary and that I am free to withdraw at any time, without giving any reason.
  3. I understand that my participation in this focus group will be confidential.
  4. I understand that anonymised data may be shared publicly.
  5. 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.
  6. 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.
  7. I agree to take part in the focus group.

To participate, please complete the form below:

 

Patient and Carers Focus Group on COVID-19