In recent years, researchers have increasingly involved individuals with lived experience of mental health challenges in their projects. Many funders now require researchers to include public and patient involvement (PPI) activities in grant applications. Particularly during the COVID-19 crisis, researchers have emphasised the need to consult and collaborate with patient and public groups.
The extent to which individuals are involved in research is variable and can range from consultative to collaborative activities. For example, lived experience experts can simply review participant information sheets and measures or they can help co-design study questions and contribute towards data collection, write-up and analysis. However, even before the pandemic, efforts have often been lacking or unevenly implemented.
PPI is a core value of the COVID-MINDS Network. Many researchers in our community are running studies related to COVID-19 that have meaningful PPI engagement.
In this blog we highlight the benefits and challenges of PPI, list useful resources, and ask members of our network to describe their experiences of incorporating PPI into their research.
Advantages of PPI
PPI benefits research in many ways. According to researchers in our network, lived experience experts, sometimes called co-producers, help to:
develop more relevant research questions
ensure that measures are consistent with research aims and are clear and accessible
provide insight into alternative interpretations of study findings
promote ideas for meaningful dissemination of research outside journal articles
gain public interest and investment in health science research
ensure research has real-world impact
Challenges of PPI
Lived experience experts may be fearful of reprisal if they are open about their own mental health challenges and researchers may need to develop processes for anonymity.
Young experts can be difficult to contact via email and researchers will need to learn the intricacies of alternative platforms such as Snapchat and Discord.
PPI can be time-intensive, which can delay survey dissemination. Investigators could seek feedback during the project rather than prior.
Examples from our research community
Researchers running the TeC-19 project, which looks at teenagers’ experiences of COVID-19, asked adolescents to help them refine their data collection methods. Together they designed an online study that was more acceptable to adolescent populations. This included the best communications methods to maximise engagement. As the study developed, researchers also asked for their views on a range of topics including government announcements and COVID-19 restrictions.
The NHS Check team, who study the health and experiences of staff working at NHS Trusts, found that hearing from lived experience experts helped to bring their study to life. They created advisory groups of patients, public and staff to help with study design and aims. They also reached the wider public by inviting people to share short videos using the Twitter hashtag #HelpUsDoBetter.
The CORAL Study investigates how the pandemic has affected people’s wellbeing, social connections and mental abilities. Collaborators in Australia, the UK and USA have continually evaluated and improved the study based on feedback from the public, service users and participants.
Researchers of the Co-Space Study in Iran used PPI to update and modify their study, which investigates how families are coping and what parents can do to support their children’s mental health. Participants were encouraged to express thoughts or concerns regarding the study design.
Investigators leading PsiCOVID-19.ar in Argentina added more questions to their survey based on participant feedback. Researchers then created a different survey targeting specific subgroups.
Finally Dr Lindsay Dewa took part in a Q&A about how she and colleagues asked young people to fully influence and guide their research for the CCopeY study. Read her comments on the COVID-Minds website.
Tips to ensure meaningful PPI in COVID-19 studies
Incorporate lived experience experts as early as possible, even before applying for funding. Experts can craft research aims and help to maximise recruitment.
If involving young people, use flexible and creative communications methods. Social media is particularly helpful.
Create small focus groups and conduct pilot tests to ensure that the most appropriate questions are being asked in studies.
Keep in mind that PPI written feedback can be extensive and overwhelming. Set aside enough time to discuss this information with your team and respond to experts.
If working abroad from your home country, rely on lived experience experts to help make materials culturally sensitive and appropriate for different contexts.
Resources for researchers
Mentimeter, Zoom and Google Forms are useful platforms for engaging with lived experience experts remotely. The whiteboard function in Zoom or websites such as Jamboard by Google and Miro can facilitate collaborative work and stimulate discussion.
The National Institute for Health Research (NIHR) has put together a valuable list of online resources for PPI.
Similarly, the NHS INVOLVE website is also good place to start for researchers interested in ensuring meaningful PPI.
More resources are listed in our Q&A on co-production.
The researchers who contributed to this blog are happy to share their experiences of PPI.
Dr Sofia Strommer (TeC-19), University of Southampton, UK.
Dr Sharon Stevelink (NHS CHECK), King’s College London, UK.
The Developmental Affective Science Lab (Coral Study). Universities involved: UNSW, Oxford, Cambridge, Pittsburgh, and Oregon.
Co-Space Study Iran, University of Tehran, Iran.
Dr Lorena Canet Juric (PsiCOVID-19.ar), Universidad Nacional de Mar del Plata, Argentina.
Dr Lindsay Dewa (CCopeY), Imperial College London, UK.