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