Mindset XR Module 11: Patient and Public Involvement and Engagement (PPIE) in mental health technology research

• PPIE  – refers to an active partnership between participants and researchers in the research process. Not to be confused with recruitment of participants for studies or product testing. PPIE emphasises the active role of participants in research.
• Lived Experience (LE) – used in this module to describe a person who has knowledge and understanding of a condition due to their first-hand experience of living with it.
• LE expert / LE advisor – individuals who use their lived experience to advocate, advise, and improve mental health practice and/or research.

• Public – in PPIE, this refers to: patients; potential patients, carers; people who use health and social care services; and people from organisations that represent people who use health and social care services.
• Coproduction – the last of four stages of PPIE. It refers to the active involvement of the public in research. This module explores the key principles and features of this stage.
• Psychological safety – a shared belief in a team that members are free to express their ideas, concerns, and questions without fear of negative consequences.

The history of patient and public engagement (PPIE) in UK research has been an iterative process. Despite ongoing challenges, the UK has built a strong foundation for PPIE that continues to evolve to meet the needs of patients, the public, and the research community.

The recruitment stage refers to the opportunities to involve people with Lived Experience in research. There are many opportunities throughout the research cycle to involve people although these may differ slightly between research projects.

Recruitment can be conducted through digital and not digital channels depending on the population of interest, as well as on the resources and dissemination channels available to the organisations.

Examples of direct recruitment include:

• Social media

• Patient groups

• Lived Experience networks

• Mental health advocacy groups

The involvement stage aims to establish an active partnership between patients and the public and researchers in the research process. It entails the establishment of formal governance mechanisms, as well as more informal practices to build trust, rapport, and openness.

Examples include:

• Working with research funders to prioritise research

• Offering advice as members of a project steering group or advisory board

• Developing and giving feedback on research materials

• Undertaking interviews with research participants

The engagement stage refers to the different ways in which research can be shared with the public. Engagement encourages researchers to listen and interact with the general public.

For example, researchers may engage with the general public through:

• Science festivals

• Media coverage

• Social media

• Multimedia such as blogs, videos, interviews

• Dissemination through community workers and organisations

• Coproduction is a term which is increasingly used to refer to involving the public in research.
  

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Co-producing a research project is an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge.

• Difficulties to reach and inform potential participants about the research being undertaken.
• Lack of relevant incentives for people to participate, considering their needs, priorities and interests.
• Difficulty to reach diversity of Lived Experience participants and people from marginalised and / or under-served communities.
• Identifying individuals with relevant lived experience who also have the interest and ability to contribute to niche fields like virtual and immersive technologies.

• Think about innovative ways in which to recruit the people that you want for your project. Most charities have lived experience networks.
• Set appropriate incentives considering the basic, psychological and fulfilment needs of your group of interests. For example:
  

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  • Providing monetary or other material compensation
  • Promoting career development opportunities through links or mentorships with organisations
  • Facilitating participation and covering transportation or internet costs; emphasising the potential impact of the research
• Consider the benefits guideline of NIHR.
• Use both digital and not digital communication channels to reach representatives from underserved and marginalised populations.
• Incorporate standards of Equity, Diversity and Inclusion. There are organisations such as Egality Health who have a range of resources to help widen diversity and inclusion.
• Collaborate with community organizations, advocacy groups, and networks that work with individuals who have relevant lived experiences. These partnerships can help identify potential advisors and build trust.

• Once advisors are recruited, ensuring their engagement and meaningful participation can be challenging. Advisors may feel their contributions are undervalued or not integrated effectively into the research process.
• Disengagement and a lack of sustained involvement.
• Formal and impersonal research environments can make difficult to build rapport and trust, or for Lived Experience Advisors to share their views openly.

• Provide training in lay terms – relevant to what you want them to do.
• Use of glossaries.
• Manage differences and expectations.
• Allow opportunities for informal and unstructured exchanges with the research team, allowing them to humanize themselves, build rapport and trust. This can be through ice-breaking activities or informal debriefs, sharing about hobbies, interests or wider views.
• Be transparent in communications and encourage feedback.

1. What am I hoping to achieve? / What outcome am I looking for?
2. What issue or challenge in my research or research plans could the perspective of the public or experiential knowledge of patient help to overcome?
3. What difference or impact do I want this involvement to make?

• Participating in mental health engagement activities might imply the admission of mental health difficulties to oneself and others, which can be highly stigmatising.
• Research in virtual and immersive technologies often involves technical concepts that can limit the accessibility and comprehension of the research findings, reducing their impact and reach.
• Not everyone has access to the necessary technology to experience virtual and immersive technologies firsthand. This can create a barrier to fully appreciating the research, especially for those who cannot engage with the technology directly.
• Traditional dissemination methods (e.g., academic papers, presentations) may not fully capture the immersive nature of the technology, leading to less impactful dissemination of the research findings.

• Consider partnering with community organisations and research charities such as Doctors/Health Centres, Recovery Communities, Shopping Centre billboards and Housing Associations.
• Provide opportunities for Lived Experience Advisors to coauthor publications.
• Ensure that Lived Experience experts who have helped in the research wish to act as advocates, speakers at conferences and events.
• Use simplified language and visual aids (e.g., infographics, videos) to explain complex concepts. Creating engaging and easy-to-understand content can help bridge the gap between technical research and a broader audience.
• Offer accessible demonstrations of the technology, such as online simulations or interactive web-based experiences. Partnering with institutions like museums or educational centers to provide hands-on experiences can also be effective.

• Building and maintaining trust and balance of power might be difficult in an environment that is usually researcher led.
• Jargon and technical language might hinder shared understanding.
• Different expectations about the role of Lived Experience Advisors within the research project.
• Tokenism (participation without meaningful influence).

• Creating a safe and inclusive environment for all, which must be a priority of engagement and support equality.
• Supporting different ways of partnering, taking time to understand how they feel best placed to contribute and what skills they already have.
• Facilitate an initial dialogue to build shared understanding and expectations about the PPIE practices and the role of Lived Experience Advisors in the project.
• Understand communication preferences among Lived Experience Advisors, including offering plenty of opportunities for meetings and debriefs.
• Adopt a learning by experience approach and encourage open feedback on the PPIE practices.
• Providing training opportunities which requires an ongoing evaluation of needs and tailor-based solutions so that Lived Experience Advisors feel supported.
• Providing glossaries and explaining scientific terms.
• Lived Experience experts should be empowered to influence decisions in research, support translational efforts, and empower others to increase mental health awareness and fight stigma on the ground.

Digital Youth. (n.d.). Watch & listen. Digital Youth. Retrieved September 5, 2024, from https://digitalyouth.ac.uk/resources/watch-listen/

Insights on conducting digital patient and public involvement in dementia research during the COVID-19 pandemic: supporting the development of an “E-nabling digital co-production” framework | Research Involvement and Engagement | Full Text (biomedcentral.com)