Frequently asked questions
Answers to the most commonly asked questions about the Improving Patient Information project
The purpose of this study is to improve the information that is available to help patients with blood disorders make treatment choices that are right for them. It will also give doctors and nurses information that will help them tell patents how different treatments might affect their quality of life. To do this, we need to know more about the health and wellbeing of patients with these diseases, and how choices are made.
The study is being organised by the Yorkshire and Humberside Haematology Network (YHHN), which includes the doctors and nurses responsible for your care and researchers at the University of York. YHHN is funded by Blood Cancer UK (formerly Bloodwise and Leukaemia and Lymphoma Research (registered charity number 216032) and this particular study is funded by the National Institute for Health Research.
In the study area, over 2000 people are diagnosed with a blood disorder each year. We are inviting as many patients as possible to fill in questionnaires for us, so that we can find out and much as we can about how they are feeling and how we can improve the care they receive.
The study involves filling in a consent form and two questionnaires: one about your health on the day of your appointment, and another about any treatment decisions that were made.
If possible, you should complete the consent form and the blue questionnaire (about your quality of life), while you are waiting for your appointment. You should complete the orange questionnaire (about treatment decisions), after your appointment. If you are not able to complete any/all of the forms at the hospital, you take them home to complete, and return them to us in the Freepost envelope provided in your pack.
Yes, if you wish, someone else can help you complete the form.
You should return the consent form and questionnaires to us in the green box in the clinic waiting room. If you complete any/all of the forms at home, you can return these to us in the Freepost envelope provided in your pack. In some cases the person that gave you the study pack may take the consent form from you and return this directly to us.
You may be offered a study pack each time you come to clinic, or at regular intervals. This is so YHHN researchers can look at any changes in your wellbeing over time. It would be a great help if you could complete the questionnaires each time you are asked, but it’s up to you whether you do this. If you do not wish to complete the questionnaire at one visit, you will still be able to take part in the study when you are next in clinic, if you would like to do so.
All our study results are published in medical journals after the study is finished. They are also included on our websites and in newsletters, which are sent to patients in the study area, if they have agreed that they would like to receive this information.
If you have lost part (or all) of your pack, please call our Freephone number (0800 328 0655) or email (enquiries@yhhn.org), and ask for a replacement. Alternatively, copies of our study paperwork are downloadable from our IPI study paperwork page.
It is up to you whether you take part or not. If you decide to take part you can withdraw at any time and do not have to give a reason. We understand that there may be occasions when you feel unable to take part in the study, particularly if you don’t feel very well. If you decide not to take part at one visit, you can always take part next time you have a clinic appointment, if you are feeling better, and if you choose to do so.
Yes, any information you provide is totally confidential and will be kept in accordance with the Data Protection Act. If you agree to take part in the study, we will use a code number to identify you and any information you give us. This means no-one will be able to trace or identify you. Your details will not be passed on to anyone else. Information is processed by dedicated staff working on the study, all of whom have been trained in confidentiality procedures.
The information you give will be used by researchers during the course of the study and will be retained indefinitely after this.
The study has approval from a Research Ethics Committee (IRAS ID: 200556), which includes doctors, nurses, other health professionals and lay people.
You can change your mind and withdraw from any of our projects, at any time, without giving a reason. If you wish to do this, please contact us on our Freephone number (0800 328 0655) or by email (enquiries@yhhn.org). Any information and/or samples you have given will be destroyed. Whatever your decision, it will not affect your standard of care.
You can contact us using our Freephone number (0800 328 0655) or by email (enquiries@yhhn.org).