What Does it Mean for the public?

“For many patients, remote methods of trial delivery can be frightening, especially for elderly people. Often people don’t trust technology and rather speak to people face to face, or they are not tech savvy.” Public Representative

“Within the South Asian Community, short information videos that are presented by a familiar face have been very well received.” Public Representative 

“Remote trials could also consider the use of digital tools that do not require an interaction via computer - for example wearables or sensors in the home setting. These tools will collect information automatically. But then it is important to guarantee data protection too.” Public Representative 

"I participated in a partially remote trial that used Fitbits. I was provided information on how to use it and how to access my data. It was monitored by the hospital and participants received follow up calls. Different age groups were included. I only had to go to the hospital twice. It was successful.” Patient Representative

Remote methods of trial delivery means less face to face visits or appointments and instead conducting the trial using online tools where possible. Some examples are listed below: 

• I can attend virtual consultations using video or telephone instead of a face to face appointments

• I will be able to complete online forms instead of paper forms 

• I can consent to the trial via email or video instead of in person 

• I will receive a link to watch a video to inform me about the trial

• I may be offered to wear a device such as a smartwatch to monitor my health instead of being assessed in person 

• I may be able to receive equipment such as a blood pressure monitor and take the measurements at home

Your trial manager must adhere to the Data Protection Act when collecting personal information such as health conditions and contact information. This legislation sets clear guidelines that they have to follow to keep your personal information safe and secure. The Act sets out the following principles: 

• Any personal information collected must be used fairly, lawfully and transparently

• The information gathered must be used for specified and explicit purposes

• Personal data should be used in a way that is adequate, relevant and limited to only what is necessary

• The trial manager has a duty to make sure the information stored is accurate and kept up to date

• Your personal information should not be kept for longer than is necessary

• Your personal data should be handled in a way that ensures appropriate security, including protection against unauthorised processing or damage

If you no longer wish to have your information stored you have the right to request that your data is erased. More information about the Data Protection Act can be found by visiting the Gov.uk website. 

The Research Delivery Network provides several ways to get involved in research. 

The People in Research webpage contains a database of opportunities to get involved. You can scroll through the opportunities or sort by topic, type of involvement or location using the drop-down menus. If you see an opportunity that interests you, click on ‘contact details’ at the end of the opportunity. You will then be able to view the contact details of the person who can provide you with further information.

Be Part of Research helps and supports members of the public to take part in studies across the country. You can look for research opportunities by using the search bar to look for research in particular health conditions or by location.  

Another way to get involved is through contacting one of your local Research Champions. This webpage lists the contact details of the people who support Research Champions in each of the 15 local regions. To discuss the possibility of getting involved in local Research Champion activities, contact the person in your area by email or telephone. 

The time commitment will vary from trial to trial. Your study team will explain to you the level of commitment you can expect before you agree to take part. If your circumstances change or you no longer wish to continue taking part you can withdraw at any time. Taking part in a trial is voluntary and you can choose to stop at any time. Your study team will support you with this.

There are benefits associated with taking part in any trial, whether it is conducted remotely or face to face. For example, we know that people who take part in studies tend to have better health outcomes. Below are some examples of particular benefits of taking part in studies that use remote methods.  

• Reduced travel. You won’t be expected to travel to an appointment, instead you may be asked to fill in an online form, speak over the phone or via video call. This is often less challenging to fit around your schedule

• More accessible for people who live in areas with poor transport links, or people who are unable to travel due to health conditions. This increases the availability of research opportunity

• There is more flexibility in how the study can be conducted, meaning the study can be designed to fit around your needs and schedule

• Reduced risk of infection. You will not be expected to enter a hospital or study site and risk being in contact with someone who is unwell

• You may feel isolated by the reduced face-to-face interactions

• You may feel excluded if you struggle with technology or have no access to the required equipment or technology, such as laptops, fast internet speeds and smartphones

• You may feel you are being less supervised and may be unsure what to do in emergencies

• Not having as much face-to-face contact may feel like there is less opportunity for you to ask questions or seek clarification

• You might find it difficult to find out about available research opportunities 

• If you need additional support, for example because of hearing or visual problems, this may make it more difficult for you to participate virtually

• You may be offered a consultation via telephone or video call to answer any initial questions or concerns 

• If you are required to use electronic devices or apps you will be offered training on how to use them effectively

• If you are required to attend a study visit, then your expenses for travel and accommodation should be covered

• You should be fully prepared by the study team and have a good understanding of what is required from you 

• You should have regular contact with study team with support when needed 

• You should be provided with a clear route for communicating with the study team

Every trial is different. Your study team will be able to explain whether there will be any impact on your usual treatment, for example:

• You may be asked to have more blood tests, scans, questionnaires or other tests

• You may be invited to more appointments which may take longer than an average appointment

• You may be offered a treatment that’s not currently available on the NHS 

Some people may find remote methods of trial delivery more convenient as this allows a greater level of flexibility, for example: 

• Virtual appointments tend to take less time due to reduced travel, meaning they can be scheduled around work and childcare commitments more easily

• The amount of face to face appointments can be reduced as you can complete measures and assessments at home, at a time that suits you

Your study team may be able to provide you with the equipment you need to take part in the study. Consultations and appointments can be completed over the phone if you do not have access to fast internet speeds. 

Some trials are delivered completely remotely. However, more often trials use what is called a 'hybrid approach' where there is a combination of in-person and remote methods. Sometimes participants are able to choose how they wish to take part in the trial. Sometimes it might be necessary for you to visit the study site for certain tests or scans. Your study team will be able to discuss the options with you. 

You should contact your study team with any questions or concerns; you will be provided with their contact information when you join the study.