Skip to main content

Table 1 Overview of included studies, models and impacts of PPI

From: Models and impact of patient and public involvement in studies carried out by the Medical Research Council Clinical Trials Unit at University College London: findings from ten case studies

Study (and status at time of interview) Disease Patient population Interviewees Model of involvement Patient or community representative Area of impact reported (based on PiiAF)a
Cohort studies  
AALPHI (ongoing)a HIV Young people in the UK who are HIV-infected or live with someone who is HIV-infected • Research nurses
• Staff member from a voluntary organisation that supports young people living with HIV
• Patient representative on the steering committee
• Representatives from voluntary organisations on steering committee
• Patient groups facilitating involvement in specific activities
• Young people living with or affected by HIV
• Patient groups or voluntary organisations that work with young people with HIV
• Research design and delivery
• Ethics
• Recruitment
Randomised controlled trials  
BREATHER (ongoing) HIV Young people with HIV living in Africa, South America, Asia, Europe or North America • Researcher • Patient groups facilitating involvement in specific activities
• Adult representative from a patient group on the trial steering committee
• Participant meetings in Uganda
• Children and young people linked to the Children’s HIV Association
• Representative of patient group
• Trial participants
• Agenda
• Dissemination
DART (completed) HIV Adults living with HIV in Uganda or Zimbabwe • Trial manager • Community representatives on trial steering committee
• Peer support groups for trial participants
• President of the Market Vendors’ Association in Kampala, Uganda, and partner institution’s community representative in Zimbabwe • Recruitment
• Dissemination
Microbicide Development Programme (MDP301) (completed) HIV HIV-negative women living in South Africa, Tanzania, Uganda or Zambia • Researchers • Community liaison officers
• Community advisory boards
• Community meetings
• Site-specific approaches
• Participant advisory groups
• Elected community representatives
• Trial participants
• Community members
• Media
• Other stakeholders
• Research design and delivery
• Ethics
• Dissemination
PIVOT (completed) HIV Adults living with HIV in the UK • Researcher
• Patient representative on the trial steering committee
• Patient representative on the data monitoring committee
• Patient representative on trial steering committee
• Patient representative on data monitoring committee
• UK community advisory board were asked to nominate members • Agenda
• Research design and delivery
• Recruitment
• Analysis of data (choice of comparator)
• Dissemination
PROUD (ongoing) HIV HIV-negative men who have sex with men in the UK who are at high risk of HIV • Researchers
• Lay member (and co-chair) of the trial steering committee and community engagement group
• Community engagement group
• Community representatives on trial steering committee (including joint chair)
• Community representatives on trial management group
• Participant meetings
• Community representative on data monitoring committee
• Representatives from community groups
• Trial participants
• Agenda
• Research design and delivery
• Ethics
• Recruitment
• Analysis of data (interpretation)
• Writing-up
• Dissemination
QUARTZ (ongoing)a Non-small-cell lung cancer Adults in the UK whose non-small-cell lung cancer has spread to their brain • Researcher
• Lay member of trial management group
• Patient representative on trial management group • Lay member of the NCRI CLG and carer for someone with lung cancer • Research design and delivery
• Recruitment
SORCE (ongoing)a Kidney cancer Adults in the UK with kidney cancer • Researcher
• Patient representative on trial management group
• Patient representative on trial management group • Lay member of NCRI renal cancer CSG and trustee at Kidney Cancer UK, with personal experience of the disease • Ethics
STAMPEDE (ongoing)a Prostate Cancer Men with prostate cancer in the UK or Switzerland • Researcher
• Trial manager
• Patient representative on trial management group
• Patient representatives on the trial management group • Patient representatives with personal experience of the disease • Ethics
Individual participant data meta-analysis  
Cervical cancer meta-analysis (completed) Cervical cancer Women with cervical cancer who took part in RCTs worldwide • Researcher
• Patient research partners
• Patient research partners • Five patient representatives with personal experience of the disease • Agenda
• Analysis of data (interpretation)
• Writing-up
  1. aAnalysis, writing-up and dissemination are not yet available for ongoing studies