Frequently Asked Questions

Is taking part in research safe?

When studies are developed every effort is made to make them safe to patients.

Each research study is different. Some involve filling in a questionnaire, being interviewed, having a blood sample or saliva sample taken. In these cases risk to your health from taking part is minimal.

However, clinical trials where new treatments and medications are tested may involve risks. This doesn't mean they are dangerous as they have to be carried out under very strict rules. Such treatment could turn out to be very beneficial to you, but there is always a chance that it could cause side effects or not work as well as another treatment.  Please talk to the researcher if you have any concerns about anything regarding safety.

During studies your health will be monitored, should you notice any changes or illnesses please report these.

What does it involve?

Your involvement and the time required depends on what is being investigated. The research team should be able to provide you with details of this, as each study is different.

Typically studies may involve:

  • filling in a questionnaire;
  • being interviewed;
  • providing a blood or saliva sample;
  • introduction of a new medication.

Payment/ reimbursement?

This depends on the study you are involved in. The research team will be able to provide you with details on this. 

Being involved in research should not leave you financially out of pocket. If you have any concerns speak to the researcher of the study, you may be reimbursed for your time or may be able to claim travel expenses

Confidentiality?

Sometimes we undertake studies for which we may ask you for additional co-operation; these studies may involve you in extra tests or us collecting additional information via interviews or questionnaires. You always have a choice whether or not to be involved after being given detailed information. If you choose not to take part this will not affect your future treatment in any way. Our full Trust data use statement is here.

Please click here for further information about transparency in patient information and health and care research.

Find out results of study?

The researcher should tell you when the research is complete and the results are publicly available. We encourage our researchers to create a summary of results for participants – ask your research team about this if you are interested.

What if I have concerns about the study?

If you have any questions or concerns about the research, you should contact either the:

Who approves the study?

All our studies are examined and approved by the Health Research Authority (HRA). They look at everything that will take place in the study and how it will be done, with a focus on the interests of patients.

Do I have to decide right away?

No, it is better to take the time to discuss the benefits and the risks with other healthcare professionals (such as your GP) or with relatives or friends before you decide. The researchers will also be available to discuss the study further.

Who does the research?

Research within Humber is led by qualified Trust staff, with different aspects of the research being undertaken by other staff, such as research practitioners under the supervision and direction of the principal investigator for the study.

All researchers are trained and assessed as capable prior to commencing research.

What are the benefits of the study?

Researchers are not allowed to promise you benefits which they can't guarantee. They might believe that a new treatment they are testing will be better than the existing treatment, but they can only tell you that you may benefit.

The biggest benefit of research is often not directly to you, but is the increase in knowledge which benefits future patients. If you are currently receiving treatment it is likely that you are benefiting from research which has already been carried out on patients in the past.

While you are on a study, your general health may be monitored closely by the researchers. You may find this extra monitoring reassuring.

Can I refuse?

Taking part in research is always voluntary. You don’t have to give a reason for refusing, though it may help the researchers if you do so. It might be something that they can change or improve in future.

Can I change my mind once I am in a study?

Yes, you can withdraw from the study at any time. You do not have to give a reason, although it may be useful to the researchers if you do so.

All researchers know that you have a right to do this.

Will my care be affected if I refuse or withdraw from the study?

No, your treatment will continue as normal if you decide not to take part in the research or if you withdraw.

Where will the study take place?

Due to the busy lives people lead, researchers will attempt to meet at a time and place convenient to you, where possible. However, at times this may be at your local clinic or hospital. All appointments will be made in advance giving you time to plan ahead.