A core aim of Supporting Early Minds is to increase the number of research-ready sites among 0-5 services. Individual research projects will have their own specific requirements, but we have pulled together a general guide to help you understand what it takes for a setting or clinical service to become a research site which is ready to participate in research.
What is a ‘research site’?
A research site is a term used to describe a setting or service that offers research study opportunities to babies, young children and their families. Researchers often want to engage with research sites to maximise the reach of their research project.
As a research site, you will be advised and supported by the researchers (or clinicians) who are leading the research project. This will include ‘study set up’, approaching potential participants, data collection, any follow-up requirements and ‘study closure’.
What to consider before becoming involved in research
Before you get involved in research you should have a good idea of the current evidence base, barriers you might encounter to being involved in research or putting evidence into practice, the benefits of becoming involved in research, and the types of research project you could get involved in.
What to consider before becoming a research site
When considering becoming a research site, an organisation or service will need to take into account several key considerations in terms of overall benefits, ethics and research alignment with the organisation or service’s goals and capacities.
There is often no right or wrong answer in terms of the key considerations because each organisation or service will be different, and the involvement from one research study or project to the next may vary dramatically in terms of what is involved.
The decision to become involved can significantly impact both the organisation or service and the success of the research study, and the following issues should be addressed before making a commitment:
It is advisable to only participate in research studies / projects which would make sense within your current or future service offer to families, or where the knowledge created as part of it would benefit your service or practice.
Generally speaking, being involved in research can be perceived as a sign you are keen to be continually improving your service offer or that you wish to offer something you could not offer before to patients / clients / service users. However, research studies / projects which may be perceived as being controversial or poorly designed may lead to negative consequences.
Ensure that all research in which you plan to be involved has been properly reviewed.
This responsibility may vary across organisations. If you are an NHS setting, you will generally need to speak to both your line manager and your Trust’s Research and Development team. If you are not an NHS setting, you should speak to your line manager in the first instance.
Supporting a research study / project may impact upon your current resources, including staff time, facilities and equipment. You should consider how your involvement may impact on your daily service.
You should consider and assess the capacity within your current staffing to see whether becoming involved in a research study / project is possible, including potential impact on staff workload and wellbeing. You may want to ask the research team what additional training they can offer if members of your staff are to be involved in research activities.
You should consider the potential benefits, risks and informed consent processes for your patients / clients / service users. A helpful place to find this would be in a Participant Information Sheet, which can be provided by the research team.
It is important to be realistic with how ‘signing up’ to a research study / project will aid / impact on both the quality and sustainability of the research activities and your organisation’s longer term strategic plans. It is usually best practice to remain involved in the research study / project for the length of time and degree of commitment agreed prior to signing up.
Any research which involves people or their data must adhere to ethical standards. These ethical standards are best reviewed by an ethics committee at a university or the NHS. It is important you are informed of any potential ethical dilemmas which may arise.
Whilst it may be taken as a ‘given’, it’s important to verify that any research study / project complies with all relevant laws and regulations, especially when it comes to NHS data or patients / clients / service users. Types of compliance may include patient / client / service user confidentiality, Care Quality Commissions regulations, Ofsted regulations, health and safety standards, and if you’re an NHS organisation, it complies with the UK Policy Framework for Health and Social Care Research – Health Research Authority (hra.nhs.uk).
All research studies / projects should be clear and robust in terms of how data is managed, including how it is collected, stored and shared. Sometimes, researchers may want to have access to routinely collected data as part of your service. You will need to make sure that you remain GDPR compliant whilst participating in any research study / project, and this can be dealt with through data sharing agreements.
All financial aspects should be considered before agreeing to be a research site, in order to ensure the research study / project is sustainable. Considerations should include who is funding the research study / project, potential costs to the organisation, or reimbursement to patients / clients / service users for their participation. Sometimes, research studies can offer additional money to reimburse some (or sometimes all) costs incurred.
Once you are ready, you can get involved in research.