Deciding whether to take part in research, and knowing what should happen if you do

We want everyone to have all the information that they need when they are deciding whether or not to take part in health and social care research.

We're working on new resources that will make sure that people have a clear understanding of how they can expect to be treated if they are part of a research study, and the safeguards in place to ensure this is the case.

We're doing this in response to one of the recommendations from a workshop informed by the Infected Blood Inquiry.

The recommendations asked the Health Research Authority (HRA) to develop a user-friendly explanation of the rights and responsibilities of people taking part in health and social care research, including what participants can expect and how concerns can be raised and responded to.

The report showed that much has changed since the failings exposed by the infected blood scandal, but that to earn the confidence of potential participants, we need to make the relationships between researchers and participants more equal.

What has changed?

Some victims of the infected blood scandal were subjected to unethical research practices in the 1970s and until the early 90s. This includes people who were not told that they were part of research, were not asked for their consent, and could not give it. It was a tragedy the likes of which must never be repeated.

Today, when people are invited to take part in research stronger protections exist to safeguard their interests. This includes organisations like the HRA, which was established to protect and promote the interests of patients, service users and the public in health and social care research.

The UK policy framework for Health and Care Research sets out principles of good practice in the management and conduct of health and social care research in the UK

Everyone involved in research, from sponsors and regulators to funders and NHS staff, has a part to play.

We know that people have more confidence in research when they know that safeguards exist. For example, almost seven in ten people told us that they'd feel more confident in taking part in a health and social care study if they knew that it had been reviewed by a Research Ethics Committee.

And research can only produce findings that benefit everyone if everyone feels confident to take part.

The workshop following the Infected Blood Inquiry identified areas where further work would be valuable to help earn that confidence and we are taking forward one of these recommendations.

Recommendations from the inquiry

We need to make the protections that are in place across the research system more visible. This includes making it clear how the different organisations and individuals who are part of health and social care research protect the rights of participants, and the responsibilities of the people and organisations involved in running research.