PPI Resources
We have compiled a list of useful resources from us to promote and support PPI. These are aimed at:
- Patients, carers, and members of the public who want to get involved in clinical trials.
- Researchers who want to involve them.
These PPI resources include:
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This document sets out the procedure for how we deal with complaints relating to our PPI work.
A step-by-step guide for PPI representatives and visitors about how to claim external expenses on the UCL online system.
Download the "Digital External Expenses Claim Guidance" (word)
In 2012, the MRC CTU at UCL adopted a policy that all our clinical studies should have PPI. To ensure that the involvement was relevant and useful rather than tokenistic, we have worked to embed high quality PPI in the culture of the Unit. This poster presented by Annabelle South at the International Clinical Trials Methodology Conference (2022) describes our processes to achieve this and includes the results of a recent survey of trial staff assessing our progress.
Meeting discussion report exploring PPI in trials looking at short term conditions – e.g. pneumonia.
Patient information sheets (PIS) are an important way to help people to decide whether or not to take part in a trial. This template helps researchers to present information in a way that is clear and easy to understand.
This guidance aims to explain how the Patient Information Sheet template can be adjusted for alternative requirements.
This gives advice to researchers who design and carry out systematic reviews on how best to involve patients and the public. The guidance is published by INVOLVE.
Advice to researchers who design and conduct clinical trials on how best to involve patients and the public. The guidance is published by INVOLVE.
Advice on how to involve people affected by cancer in MRC CTU at UCL cancer trials and studies.
An induction pack for patients who get involved in our trial governance committees – trial management groups, trial steering committees, and independent data monitoring committees.
This paper described how we engaged young people in the dissemination of the findings from the Adolescents and Adults Living with Perinatal HIV (AALPHI) study to both study participants and the wider community.
BMC paper exploring how young people were involved in the AALPHI study
This paper offers recommendations for enhancing PPI in future Multiple Sclerosis clinical trials.
Clinical Trials Units are encouraged to integrate Patient and Public Involvement (PPI) into all aspects of trial design, running and oversight. This research explored the induction and training of PPI Contributors joining trial oversight committees and was used to update the MRC CTU at UCL induction pack for new PPI Contributors.
This paper explores how participants have been actively involved in some of our clinical trials and the impact this has had.
Case studies that describe PPI in clinical trials, meta-analysis and an observational study. It shows how people were involved and the impact this had.
This survey, undertaken in 2012, showed that most of our researchers felt that there were clear benefits from involving patients and the public in the design and running of trials. As a result of this survey, the PPI Group increased its efforts to get PPI established across all trials at the MRC CTU.
Describes how we involved women affected by cervical cancer in a systematic review and meta-analysis of individual patient data to evaluate treatments for cervical cancer, and the impact this had on the research, the researchers and the women affected by cervical cancer who got involved.
This paper reports the evaluation of participant and community involvement in the "PROUD" trial.
Every year on 1st December, we mark World AIDS Day to show solidarity in the fight against HIV and AIDS, and to remember those who have sadly lost their lives.
Since the start of the global AIDS epidemic in the 1980s, researchers have made enormous progress towards preventing HIV transmission, and treating those who are living with HIV so that the virus remains suppressed. But while there have been marked improvements for adults, treatment coverage in children and adolescents is lagging behind.
In the second of our World AIDS Day episodes, we highlight the important role that young people living with HIV play in research, by shaping clinical trials to better serve the needs of their community.
This episode features Lungile Jafta, who works closely with young people through Penta’s youth engagement programmes, and Gugu, a former Youth Trials Board member from South Africa who is living with HIV.
In this episode of Trial Talk, we explore the role of people affected by MS in the Octopus trial. Susan Scott, a pharmaceutical publications specialist and Octopus patient representative, shares her involvement in the trial and explains how PPI has benefited Octopus so far.
STAMPEDE is a long-running trial in advanced prostate cancer, in which nearly 12,000 men have taken part. Thanks to its multi-arm multi-stage platform design, STAMPEDE has tested many different treatments and directly led to improvements in the standard of prostate cancer care several times.
This episode is about patient and public involvement (PPI) in the trial. David Matheson, a Reader at the University of Wolverhampton and STAMPEDE patient representative, shares his insight into the work this entails and why it is so important to champion the voices of patients. We also hear about PPI from the perspective of trial researchers, Max Parmar and Nick James.
Susan Scott, a PPI representative of the Octopus trial, presented at the “Innovative phase III randomised clinical trial designs” symposium last June 2023. She talked about the different areas where PPI is involved in the Octopus trial.
This sets out our commitment to PPI and the values that underpin this. The policy was approved by our Senior Management Team in 2012. For a copy of the policy, please email us.