Our work to help develop better treatments is only possible with the support of patients, their relatives and carers and other members of the public.

Without patients willing to take part in our clinical trials, those trials couldn’t take place.

And without the support and input of patients and the public willing to help us shape our research, our trials would not be so successful.

The members of our Patient and Public Involvement (PPI) groups bring their unique experiences and life skills to help us improve the design and delivery of our trials. Many of the members of these groups are former patients who have taken part in our trials or their carers, friends and relatives.

With the support of our PPI groups, and as part of the NIHR’s ‘be part of research‘ campaign, we also work to actively raise the profile of research, so that patients better understand the opportunities that exist for them to participate or get involved.

Many of our clinical trials actively involve patients and members of the public, whose input is vital in helping us successfully design and deliver our research.

We are able to draw on the expertise of four patient and public involvement (PPI) groups who help us shape our clinical trials. These groups are specific to certain disease areas, as some people like to get involved with research within an area to which they have a connection; however they are increasingly contributing to a broad portfolio of research.

Musculoskeletal
Cancer, covering both solid tumours (oncology) and cancers of the blood (haematology)
Cardiology
Oral and dental health

Involving non-medical people in our research is very important and we’re always looking for new members to join our PPI groups.

Many members are people who have personal experience of these diseases, either as patients or carers, and this enables them to provide very relevant input to our research. But other members are simply people with a range of different life experiences, who understand how important clinical research is to improving healthcare, and want to help where they can. Whatever people’s background or motivation, their support and input directly and positively benefits our trials.

Taking part in trials

If you take part in trials at our facility, you will be helping us to carry out exciting, ground-breaking research to develop new treatments that could change or even save lives.

We guarantee a high-quality, safe and welcoming environment for all patients taking part in our trials and we meet all the necessary legal and ethical requirements for carrying out this kind of research.

Not all our trials involve testing drugs. Some are looking at new techniques or medical devices. All of our trials are aimed at finding better ways to prevent, diagnose or treat different diseases.

We recommend you talk to your consultant or GP as a first step. They will be able to find out if there are clinical trials for your particular disease or medical condition, either within our facility or more widely across Leeds Teaching Hospitals.

Every trial has guidelines as to who can take part, which are called eligibility criteria. These ensure that trials include the sort of people who might benefit from taking part and exclude those for whom taking part is not suitable or might put them at risk. The criteria also ensure that the trial is able to gather useful information that will help decide if a new treatment or technique should be taken forward. This is how we obtain reliable research evidence.

Your consultant or GP will look at the eligibility criteria to see if you might be able to take part in one of our trials. Some further tests may then be necessary – such as a blood sample – to ensure you meet all the criteria and could be enrolled into the trial.

Once you are referred to us, we will explain everything about the trial to you in advance to help you make your decision. The decision to take part is completely up to you and you can choose to stop at any time, without any negative impact on your normal medical care.

For more detailed information on taking part in trials within the CRF, take a look at our FAQs.

If you’d like to speak directly to a member of the CRF team, see our Contact page for more details.

See here for more information on taking part in trials within Leeds Teaching Hospitals.

Our PPI groups work with us in lots of different ways:

Taking part in focus groups, to discuss research questions and help us decide our research priorities
Joining research steering groups, to help us develop a specific trial or series of trials
Taking part in writing trial protocols – which set the parameters for a trial
Working with us on grant applications to support new trials
Providing advice on trials that are underway, for example, identifying elements of a trial that patients might find off-putting and which might be affecting recruitment
Supporting our outreach work to raise awareness of research amongst patients, including the NIHR’s ‘be part of research‘ campaign

The PPI groups meet either quarterly or every six weeks, though we are sometimes in touch with members at other times to ask for their help on a specific question. We also sometimes have meetings that bring members from the different disease area groups together.

Involvement in a PPI group is voluntary and people give as much or as little time as they are able. No medical expertise is needed to join a PPI group – the value of the support they provide is that it brings a different perspective to our own.

If you’d like to join one of our groups, or simply find out a bit more about what might be involved, see here for who to contact.

For more information about our PPI strategy, please see our strategy document here or download our PPI booklet here.