Using technology to let patients report health outcomes

Can electronic questionnaires collect patient reported outcomes in clinical trials?

Background

Within health care and clinical trials, questionnaires can be used to collect information from patients on the impact that treatments and health conditions may be having on their quality of life.

This can include general information such as mobility and tiredness, as well as more disease or treatment specific questions such as those about bowel movements or sexual function.

Traditionally, these questionnaires are provided to patients on paper for them to complete either during a hospital clinic visit or at home.

The Clinical Trials and Statistics Unit at The Institute of Cancer Research (ICR-CTSU) would like to investigate offering people the option of using electronic online questionnaires as an alternative to completion on paper. To be sure that this will be successful and user friendly we are asking peoples’ opinions on the electronic collection of health questionnaires. We would also like to collect information about issues that may prevent trial participants from being able to complete questionnaires electronically.

How can I get involved?

We would like patients and the public to undertake our survey in the first instance.

Following on from the survey we will run a focus group to discuss the best way to start collecting questionnaires electronically and to check that they are suitable for our trial participants. If you are interested in participating in this focus group please provide your contact details at the end of the survey.

Participants in the focus group will be asked whether they would like to take part in the committee overseeing the project.

This project has received a grant from the NIHR Biomedical Research Centre at The Royal Marsden and the Institute of Cancer Research.