The new Be Part of Research Volunteer Service helps put researchers in contact with people who have expressed an interest in that area of research. The aim is make it easier for researchers to find participants, and for potential participants to find research opportunities that might be suitable for them.
Volunteers are invited to create an account and give consent to be contacted by the Be Part of Research team. They can indicate which condition areas they are particularly interested in, and provide basic details. The Be Part of Research team can direct them to studies they may be interested in, from studies registered with the service.
Studies on the NIHR Clinical Research Network (CRN) Portfolio, or those that are NIHR-funded, are potentially able to use the service, including commercial and non-commercial studies. The service is free of charge to use.
Benefits to study teams using the service
- Quick, free and easy access to research-engaged volunteers across the UK, who have expressed an interest in taking part in specific areas of research, helping to reduce cost and time to reach your recruitment targets.
- Ability to identify volunteers by age, ethnic group, gender, location.
- Enable volunteers to take part in research and raise the profile of your study.
- The service has been developed with involvement from the Health Research Authority (HRA). This wording agreed with the HRA and shared with their Approvals Specialists explains the use of the Be Part of Research Volunteer Service as a recruitment tool and should be included within ethics submissions to support ethical approval.
- Opportunity to work with the Be Part of Research team who have proven experience in supporting researchers to recruit volunteers through the NHS COVID-19 Vaccine Research Registry and Join Dementia Research services.
How can I use the service?
To use the service study teams will need to:
- Have a pre-screener service, website or agreed plan for how interested volunteers can be directed to engage with your research team. For some studies, there may be a large response from volunteers in a short timeframe, so you will need a plan for how you might respond to this demand.
- Have a Research Ethics Committee (REC) and Be Part of Research approved email to send to volunteers (guidance will be provided on what needs to be included).
- Agree to the Terms & Conditions, which includes:
- Responding to volunteers within agreed timescales, working to ensure they have the best experience of the service
- Listing Be Part of Research as recruitment tool in approved ethics application (HRA approved wording is available).
- Providing feedback to the Be Part of Research team on the number of volunteers who have expressed interest in the study; and the number who have enrolled.
- Listing the study on either ISRCTN or ClinicalTrials.gov so that the study information appears on Be Part of Research.
Following submission of the study registration form, you will hear back from the Be Part of Research team within five working days. Once your study is approved to use the service, we will signpost volunteers to your study when you are ready.
The service is currently available for volunteers to register, however, as it is in ‘Private Beta’ stage, the service is being promoted to select groups only. We are actively promoting and testing the service with people on the NHS COVID-19 Vaccine Research Registry and from the Join Dementia Research registry, who have expressed an interest in taking part in other areas of research.
The service will work in a very similar way to the NHS COVID-19 Vaccine Research Registry that NIHR developed with NHS Digital, whereby people were notified about studies that might be of interest.
It will take time for the Be Part of Research Volunteer Service to grow the number of volunteers on the registry; and to know which areas of research they are most interested in. We are looking to engage with study teams as early as possible in order to promote trials that are looking to recruit volunteers through the service.
Once the service can demonstrate that volunteers have registered, been signposted to a study and subsequently enrolled onto it, the service can then move into ‘Public Beta’ when it will be widely promoted to the public.
If you’re interested in using the service to recruit to your study, please complete this registration form, giving us a few details about your study so we can get in touch with you to discuss it further.
Questions and Answers
Volunteers
How will volunteers be matched to my studies?
Volunteers are able to select health and care research areas they are interested in. They also provide demographic details including age, sex, location and ethnicity.
Research teams specify what type of participants they are looking for, and the Be Part of Research team will use the data provided through the volunteer service registration to identify potentially suitable volunteers. The Be Part of Research team will then send the research team’s email containing study details to interested, matched volunteers. This should contain a study screening website or details of how to contact the research team and view their website, so they can find out more.
We anticipate that studies will get the best response if their emails direct volunteers to a study website. If a volunteer contacts the research team, it is the research study team's responsibility to maintain communication with the volunteer and ensure they receive all the details they need to make an informed decision about taking part.
What information will be collected from each volunteer?
The following information is collected from each volunteer:
- Name
- Email address
- Home address (including postcode)
- Date of birth
- Sex
- Gender
- Ethnicity
- Areas of research interested in
What conditions are volunteers able to select from?
Volunteers select areas of research they are interested in from a list of conditions that we manage and can refine over time. There is no limit to the number of areas of research that volunteers are able to select.
Volunteers can also select from some further health conditions that have been identified as of interest to users on the Be Part of Research main site or they can include themselves as healthy volunteers. This is one area that we are testing during ‘Private Beta’, and we can refine this list if we hear from researchers and/or volunteers that it doesn’t work well for them.
Will I be able to identify volunteers from any devolved nation?
The service is being developed to serve the UK as a whole, although initially volunteers will only come from England, Scotland and Northern Ireland. We continue to work closely with devolved administrations to enable a broad reach of volunteers. Your study must have the essential approvals in place to run in the nation you intend to contact volunteers in.
How many volunteers are registered on the service?
We are only just beginning to promote the service so numbers are increasing weekly through our targeted groups of volunteers. We expect them to grow rapidly as we further promote the service.
Studies
Is there a timescale whereby we must contact the volunteers matched to a study?
Once a volunteer expresses an interest in a research study, it is expected that the research study team will be in contact with the volunteer as soon as possible. We will discuss these timescales with each study, but researchers need to be committed to ensuring a positive volunteer and participant experience.
How do I report back the number of volunteers who are recruited through this service?
Researchers using the service will need to inform the Be Part of Research Volunteer Service team of how many volunteers are taking part in a study they are running.
At present this will be via an email to the Be Part of Research Volunteer Service team, however we are looking to provide an improved way of doing this in the longer term. Study teams need to be able to collect this data and discuss their processes with the Be Part of Research team.
Can the Be Part of Research Volunteer Service be used as a feasibility tool?
We are working to develop a feasibility tool to identify the volunteer population for your study. Research study teams will be able to view anonymised volunteer information so that they can determine if the registry would be a good recruitment tool for them. Until this tool is in place, the Be Part of Research team will be able to discuss and share this information with you.
My study doesn’t have a website or a pre-screener that we can signpost volunteers to, can we still use it?
Possibly, but we will need to discuss this with you as we have a responsibility to ensure a good service is provided to the volunteer. Please contact the Be Part of Research Volunteer Service team
What plans are there to further develop the service?
Plans are in place to further develop this service. This includes making a pre-screener available for all studies using the service if they don’t have access to one. We will enable study teams to set the questions for their individual screener to control the volunteers that are signposted to them. If you have any questions, please contact the Be Part of Research team.
Information Governance and data protection
What are the information governance and data protection arrangements to facilitate the Be Part of Research Volunteer Service?
The Be Part of Research Volunteer Service is an additional service with the Be Part of Research Service that is provided by the National Institute for Health and Care Research on behalf of the Department of Health and Social Care (DHSC).
Due to the nature of information being collected, the Be Part of Research Volunteer Service has been subject to an approved Data Protection Impact Assessment process via the DHSC Data Protection Officer. As a result of approval to go ahead with the service, the Be Part of Research Privacy Policy has been updated to ensure the necessary information governance and data protection issues are addressed and requirements in place to facilitate the delivery of the Volunteer Service element of Be Part of Research service by the Be Part of Research team.
Once a volunteer contacts your study team and/or is subsequently enrolled onto a study, the study team becomes responsible for onward governance and this falls outside the scope of the Be Part of Research Privacy Policy.