What is Reach West about?
What do you mean by "research register"?
A research register is a list of people who are willing to be contacted in the future to take part in health research. Many members of the public would like to have the opportunity to take part in research that they are suitable for. A research register helps to link members of the public who are interested in research with research teams who are seeking participants for their studies.
What about my data?
When researchers want to carry out a research study, they will approach Reach West to identify people that are suitable for their study - e.g. age, sex; possibly with a specific health condition or on specific medication, or who may be entirely healthy. The benefit of Reach West is that we can identify how many suitable people for the study are on the register. This greatly reduces the time and cost of running a study and also helps our volunteers to get more involved in research.
Reach West would then approach suitable registered participants to tell them about the work being undertaken and invite them to take part. If you agree to take part in a study, only your contact details are passed onto the researcher, so that they can provide you with more information about the study. You can say no to any study that you are approached to take part in.
What happens if I change my name or address?
If you change your name or address at any time, you can contact the Reach West team by email, firstname.lastname@example.org or phone, 0117 342 7718. Alternatively the next time we contact you about a study, you can let us know your change in details.
Is Reach West part of the NHS?
Reach West is funded by the NHS National Institute for Health Research (NIHR) and is run by the NIHR’s Collaboration for Leadership in Applied Health Research and Care West (http://clahrc-west.nihr.ac.uk/). We liaise closely with the various NHS Trusts throughout the west of the UK.
What is Reach West?
Reach West is a partnership between the NHS Trusts in the west, NHS National Institute for Health Research and the University of Bristol with the aim of developing a research register of people living in the west of the UK who have said they are interested in helping with health research.
What is the register?
The register is a list of people living in the west of the UK who are willing to provide secure access to their medical records through the NHS. By joining the register, individuals also give permission for Reach West to contact them about research studies for which they may be eligible.
Why is it important to have a register?
Having a register allows individuals who are interested in research to be involved in projects that are suitable for them. This reduces the time and cost of recruiting individuals into health related studies and also provides more opportunities for members of the public to become involved in research.
Why was the Reach West register set up?
It became clear that members of the public were keen to take part in research but felt that there were limited opportunities for them to do this. At the moment researchers often find it difficult to recruit participants for research. Reach West was established in 2013 to help to improve research recruitment, which in the long run greatly improves patient care and experience.
Who else is involved in Reach West?
Reach West works in partnership with the University of Bristol and NHS Trusts within the west of the UK.
Why should I sign up to Reach West?
Reach West aims to make it easier for researchers to conduct research, whilst at the same time also make research more accessible for members of the public. Research is needed to continue to improve health services and treatments for all aspects of medicine. By joining Reach West you could be helping to improve the NHS and health services for yourself as well as future generations.
Do Reach West volunteers need to be unwell or have an existing health condition?
Reach West aims to build a register with a cross section of individuals. We are seeking volunteers with a range of conditions as well as healthy volunteers. If you are unsure whether you are suitable to volunteer for Reach West, please get in touch with us.
How do health trials work?
Research projects can be very varied and range from desk based research to long term participation over many years. Some studies involve drug or medical intervention but many are interested in lifestyle and environmental factors. You will be informed of the nature of each study before you decide to participate.
Which diseases are being researched?
Reach West is a non-disease specific research register, which means that research on all aspects of health is conducted. We are seeking volunteers with a range of conditions as well as healthy volunteers.
How does Reach West work?
What sort of research would the Register invite me to join?
You might be approached to take part in a range of studies. You might be asked to take part in a specific study related to a particular medical condition or if you are taking certain medication. Alternatively you may be asked to take part in a study as a ‘healthy volunteer’, possible because of your age or sex or because you live in a particular location.
What currently happens with all our medical data?
NHS computers regularly store information about patients, their treatment and diagnoses. This information also helps to deal with hospital admissions, waiting times and outpatient appointments. After anonymising with specific codes, the NHS uses this information at local and national level to plan and deliver health services. Whenever medical records are accessed, security is always paramount and many searches are done by computer using codes rather than identifiable information.
How do I join?
- How do I join the Reach West register?
How long will it take to sign up?
The process of volunteering for Reach West should take no longer than 2 minutes. The only information we require from you is your name, address and contact details so we can identify the correct medical information and to contact you in the future.
What happens to me after I join?
What will happen if I join?
If you decide to join Reach West, we will search the NHS computer systems and use the coded data from your record to check whether you are suitable for certain studies. If you are suitable we will contact you by email or post to let you know about the study and provide you with some information. You will then have the opportunity to decide whether or not to take part in the study. You can say no to any study that you are contacted to take part in.
How often will you contact me about potential studies?
This will vary depending on the types of study being conducted at a particular time. We will aim to contact you no more than four times a year with information about studies for which you may be eligible. It might be that you don’t get contacted for a long period of time if there are no studies for which you are eligible.
Does this mean I will have to take part in a future health study?
By signing up to Reach West you are not committed to taking part in any health research. For every study that you are approached to take part in, you always have the option of saying no. You are under no obligation to take part in any research.
Do I have to take part in a study when invited?
Reach West facilitates you being approached to take part in studies. The decision to take part in a study is always yours. You can say no to any study that you are contacted to take part in.
Could there be any risk to my health in taking part in study?
Medical and health related studies are strictly monitored and regulated. Safety is paramount in all studies and in the unlikely event that a risk is identified studies can be altered or stopped. If you decide you would like to take part in a study, the advantages and possible disadvantages will be discussed with you. You can of course choose to withdraw from a study at any time.
Will I get paid if I take part in a study?
A few studies will offer payments and others may cover travel expenses. The main benefit of Reach West is being able to contribute to improving healthcare both now and for future generations.
How will I be contacted?
We will contact you by post or email with information about relevant studies.
Am I going to be bombarded by information from Reach West?
Absolutely not. We are mindful that being bombarded with lots of information is unhelpful and off putting. We aim to contact you no more than 4 times a year about studies for which you may be interested in taking part. If you have concerns about the amount of information you are receiving from Reach West please contact the team by email (email@example.com) or phone (0117 342 7718).
How can I find out more about the studies conducted through Reach West?
Current ongoing studies and information about past studies will be put onto the Reach West website. Please contact the team by email (firstname.lastname@example.org) or phone (0117 342 7718), if you would like more detailed information about a specific study.
I'm worried about confidentiality
I'm worried about confidentiality
We will securely store any information about you and your medical details at all times. Access to your information will be strictly controlled and limited to Reach West staff. Strict NHS and University data confidentiality rules apply to all data involved in Reach West.
Research project applications will first have to be approved by NHS and/or University ethics committees. Reach West staff will search through the register to find people who are appropriate and then contact them with information about the study. If you receive this invitation, you will be able to decide whether or not you are interested in taking part. If you are interested then, with your permission, we will let the researchers know and provide them with your contact details only. If not then, you are completely free to decline at this stage. Your medical details are not shared alongside your personal details at any point.
Will my taking part in Reach West be kept confidential?
Your participation in Reach West will remain completely confidential. All information and communication will be held securely at all times. It will be managed by Reach West staff who are strictly regulated.
Who will have access to Reach West?
Researchers wishing to work with Reach West will be required provide evidence that the research has been approved by an NHS or University ethics committee.
All projects will be checked to ensure they meet with all regulations and that they aim to improve health and health services. Only research projects meeting these criteria will be allowed to use Reach West. It is expected that the vast majority of research projects will be funded by the NHS, University or government funding bodies. Commercial companies based in Universities or the private sector will have to provide evidence that they are fully compliant with all regulations and that they aim to improve health and health services. We will make it clear to you who funds the research so you can decide whether to take part.
What safeguards do I have that my personal health records will remain confidential?
The NHS works under strict governance procedures. All searches have to be approved. In addition much of the basic analysis and selection is done anonymously so your name and address is only made available as the final step when we need to contact you.
How do I manage my membership?
How long will my name stay on Reach West?
Your name will stay on Reach West until you request its removal. You can withdraw from Reach West at any time without giving a reason.
What if my contact details change?
If you change your contact details, then please let the Reach West know wither by phone (0117 342 7718), email (email@example.com) or post.
How do I withdraw if I want to?
You can withdraw from Reach West at any time by sending your request in writing to the Reach West team. You do not need to provide a reason for withdrawing from Reach West and this will not affect any aspect of your ongoing medical care.