Scoping review of needs for digital technology in co-creation: a health CASCADE study

Abstract

Background Patient and public involvement (PPI) is increasingly recognised as essential for meaningful, equitable, and impactful health and social care research. Co-creation is a promising involvement approach, but it faces barriers to enable its optimal potential. Digital technologies have the potential to overcome these challenges and strengthen the participatory process, but the specific technology needs that underpin effective participation and engagement remain underexplored. Methods We conducted a comprehensive scoping review of 60 peer-reviewed studies to systematically map the digital technology needs supporting co-creation processes. Needs were extracted and thematically analysed, resulting in a structured synthesis. Results A total of 337 distinct digital technology needs were identified and organised into five thematic areas: Ensuring Integrity, Enabling Methodology, Cognitive Needs, Group Dynamics, and Process Management. While most needs focused on functional attributes, non-functional characteristics, such as usability, scalability, and inclusivity, emerged as critical for meaningful patient and public engagement. The review highlights the fragmented articulation of technology needs across disciplines and settings. It proposes a structured framework to make latent needs visible, align stakeholder perspectives, and guide the development of digital tools. The emerging role of artificial intelligence in supporting hybrid models of involvement, along with the associated ethical challenges, is also discussed. Conclusion This review provides the first thematic framework for understanding and addressing digital technology needs in co-creation. The findings offer a foundation for researchers, practitioners, and policy-makers within health and social care to develop and implement digital tools that enhance accessibility, engagement, and impact of participatory processes. Future research should validate and refine these insights in partnership with patients, service users, and diverse communities to ensure technological solutions foster truly inclusive and effective involvement. Plain English summary Involving patients, carers, and the public in health and social care research (often called patient and public involvement, or PPI) helps ensure that the research addresses real needs, is more useful in practice, and remains inclusive. Today, digital technologies, such as online meetings, apps, and artificial intelligence, can help more people become involved. But what do we really need from these technologies to make everyone’s involvement easier and better? In this study, we looked at 60 research articles to find out what kinds of digital tools are needed to support group work and co-creation in research. We discovered 337 different needs and grouped them into five main areas: making sure the process is open and equitable, so that everyone has a fair chance to contribute, supporting the methods, helping people understand and take part, working well in groups, and keeping everything organised. We found that while many tools focus on what they do, it’s just as important that they are easy to use, work well for lots of people, and help everyone join in, especially people who may find it harder to get involved. We also discuss how new technologies like artificial intelligence can help, but why they need to be used responsibly. Our findings can help researchers, organisations, and the public choose or design better digital tools for involving patients and the public in research. This way, everyone’s voice can be heard, and health and care research can become more inclusive and effective.