I-ASC: Identifying Appropriate Symbol Communication

Public Involvement

Last updated 16 Nov 2020

Introduction to Public Involvement

Public involvement (PI) refers to the participation of members of the public in research projects. This section of the website provides information about PI on the I-ASC project. It includes practical resources and learning materials to support understanding of PI in research.

How can we involve the public?

The public can be involved in research projects in many ways. They could be participants in a research project, providing data to researchers. They could advise the research team on how to plan and complete the research. They could also be co-researchers, working on the project as part of the research team.

The public can be involved at different stages of research:

  • Planning: thinking of a research idea, designing a project plan, applying for funding
  • Advertising a project and finding participants
  • Collecting data from participants: this could include deciding on interview questions, asking the questions
  • Analysing and interpreting participant data
  • Reporting research findings to different groups of people (e.g., the public, other researchers, healthcare workers).

The I-ASC project included PI activity at all stages of the research. The I-ASC research focus was communication disability, where children and young people could not speak but used electronic communication aids instead. This is sometimes called augmentative and alternative communication (AAC). Children and young people who use AAC and their families were involved as research participants. Young people and family members were members of the project Advisory Board and Critical Friends group. An AAC user and the parent of a young adult who uses AAC were co-researchers on the project. They worked as part of the research team from the initial planning to reporting stages.

The 7 stage research cycle: how and when PI co-researchers were involved in the I-ASC project.

This diagram is based on NIHR INVOLVE’s Briefing note eight: Ways that people can be involved in the research cycle (available at: https://www.invo.org.uk/wp-content/uploads/2016/05/CCF_Public_Payment_Guide-1.pdf)

Why is PI important?

Involving the public in research is important for a number of reasons:  

  • It ensures research is democratic and ethical

People who are affected by research have a right to contribute to discussions about what type of research is funded and how it is carried out. Also, people who use health and social care services can find being involved in research empowering.

  • It can improve the quality of research

Involving members of the public in research can bring different opinions to discussions about what type of research to do and how to do it. This can help to make research methods more acceptable to research participants. This may mean that people find it easier to take part in research projects. It can also help to increase the quality of the methods used to collect and analyse data from participants. This should lead to superior research findings.

  • It can improve the relevance of research to people who use health and social care

When members of the public are involved in deciding how to carry out research, the findings are likely to be more relevant to the recipients of health and social care services.

The PI co-researchers discussing I-ASC data collection materials

Evaluation of PI on the I-ASC project

Towards the end of the I-ASC project, the team decided to evaluate the public involvement aspects of the project. Our aims were to:

  • identify processes that made PI possible, particularly for people who use AAC. This group has been considered “hard to reach” in research projects in the past.
  • measure the costs and benefits associated with PI.
  • develop resources that could help understanding of the value of PI and how to make it work for other research projects.

During the evaluation, we interviewed different people involved in the project about their experiences and impressions of PI. We also collected information about the resources used to enable PI.

What we found out about PI on the I-ASC project

We found that meaningful PI took place at all stages of the project. The two co-researchers were equal members of the research team alongside people who had worked as researchers for a long time. The co-researchers were fully involved from the start to the end of the project. Their roles changed during the project, depending on what the project needed, what they could offer and what they wanted to do.

We found that measuring the costs and benefits of PI after the project had finished was difficult. We recommend that researchers measure costs and benefits whilst they are doing their research, in order to make measurement accurate and straightforward.

We did find that PI on the project required significant resources. It took a lot of planning and time to get it right. All members of the research team required training and support to engage well in public involvement work. The co-researcher who uses AAC required personal support, which took time and money to arrange. They also needed specialist equipment to work in the university setting.

We found that making meaningful PI possible could be challenging. As well as the resources required (see above), the team needed to work hard to make some of the research activities accessible to members of the public. For example, they needed to think carefully about the way they communicated with the co-researchers when explaining research processes. It was also difficult to pay the co-researchers for their time. It was not easy to offer the co-researchers employment contracts or salaries due to various local and national policies. 

Despite these challenges, we identified many benefits of PI on the I-ASC project. People reported that they thought the research methods and findings improved because of PI. The research team thought they worked better together because the co-researchers were involved. People also told us that the co-researchers provided positive role models for other people who use AAC. The co-researchers told us they enjoyed their work and felt valued for their contributions.

We have used our findings to develop practical resources that may help increase involvement of the public in research, especially those regarded as hard to reach or include. The resources may also help members of the public to think about whether they would like to get involved in research. See the “I-ASC Resources” section below for more information.

I-ASC Resources

Webinar

Manchester ESRC Festival: AAC

Evaluation of public involvement during I-ASC

Documents

Video clips

Access issues

Personal assistants

Mentoring and support

Preparation for meetings

Payment

My experience as a co-researcher

Learn more