Would you like to share your experience and help shape our information resources?

 

Sarcoma UK provides information and support to anyone affected by sarcoma cancer. We have been accredited with the PIF TICK, which is the UK-wide Quality Mark for Health Information.

We are committed to involving sarcoma patients and those affected by their diagnosis in the development of our health information. We are looking for volunteers to be involved in focus groups and information reviews before our information is published. This is to ensure that it reflects a wide range of patient experience and is as helpful and useful as possible to everyone who needs it. This is an important role which will enable you to make a real difference.

 

What you can expect from the role:

  • This role will be ad hoc and you will be contacted by email as and when opportunities arise. There is no pressure to respond every time.
  • We won’t ask you to review more than one information resource in a six-month period as we want to ensure that our information reflects a wide range of experiences
  • We may ask reviewers to review information about sarcoma sub-types other than that which they have personal experience with, to ensure that newly diagnosed patients and their loved ones, who have never heard of the sub-type previously, can fully understand our information.
  • Focus groups will be run by one of our nurse specialists and we usually need 3-5 participants. These sessions usually run for a few hours with a set agenda, either virtually or in person. In some cases, there may be a follow-up session arranged to explore topics further.
  • Information reviewers will need to commit to sharing their thoughts about the resource by answering a set list of questions. The resource and the questions will be emailed to you. If needed and where possible, we can also post these to you. You will need to send back your comments within 2 weeks.

 

Who we are looking for:

You don’t need to have any specific knowledge of sarcoma and we welcome everyone to sign up to get involved. We will provide you with the support you need.

Focus groups participants

  • Willingness to share your experience of sarcoma or share your experience of someone close to you being affected by sarcoma in a confidential group setting. These sessions may be held during the day or in the evening.

Information reviewers

  • Reliable – you will be required to send your comments back to us within the set timeframe of 2 weeks
  • Committed ­– it’s really important for us that we get as much feedback as possible about our information resources so we’d ask that you commit to answering all of the questions that we ask you
  • Flexible ­– we may need you to review different types of resources about a wide range of different topics

If this is something you’d like to be involved in, please fill in the forms below and we’ll be in touch. 

If you have any questions, please get in touch with Laura at laura.hart@sarcoma.org.uk