Involving End Users in Your Research

Involving the end users in the design and management of research projects has become increasingly important . It is no longer acceptable to run projects in which participants don’t have a voice. But how does this work? How do you identify potential users? What are the potential pitfalls or problems, and what benefits can you expect? The latest Grants Factory session took two very different case studies and looked at the difficulties –but also the significant benefits – of involving users in research.

Case Study One: Research for Patient Benefit

Annette King

The National Institute for Health Research (NIHR) has been a strong advocate for ‘patient and public involvement’ (PPI), and has established an advisory group, INVOLVE, to advocate greater participation. Users should be engaged at all stages of a project as ‘active partners’, and not just as ‘subjects’. This engagement can range from ‘consultation’, to ‘collaboration’, to ‘user-led’, where the service users themselves set the research agenda.

Annette King described a ‘collaborative’ project funded by the NIHR’s Research for Patient Benefit scheme. The project, led by Eve Hutton of Canterbury Christ Church, was a study into the effectiveness of an education programme for parents and teachers responsible for the postural care needs of disabled children. This had been developed with users, including the parents and children themselves. One such was Judi Mortimore, who had helped the project team in identifying the research questions, had been active in the management of the project, had developed participant information resources and techniques, and had helped to disseminate the findings.

With her input, the team had been far more effective at engaging with those who would benefit from the research. Neither Annette nor Judi shied away from the fact that, at times, the relationship had been difficult: there had been misunderstandings and differences of opinion. Nevertheless, the research was stronger and more robust as a result, and the findings more useful and applicable.

Case Study Two: Age Discrimination

Dr Hannah Swift

The second case study looked at a different kind of user: those who commission and use the research. Dr Hannah Swift, a Research Associate working with Prof Dominic Abrams, explained how a small, straightforward piece of research commissioned by Age Concern a decade ago had led to a broad portfolio of interrelated projects for Age UK, the Equality and Human Rights Commission, the European Social Survey, and the Department for Work and Pensions. This portfolio had been incredibly fruitful for both the academics and the users of the research.

Prof Dominic Abrams

Throughout the process, Prof Abrams and his team had to be both reactive and proactive. On the one hand, they had to react to specific requests from external bodies, and consider the benefit (and dangers) of working with them.  On the other, they had to make contact with organisations that might be interested in their work, finding the most appropriate people, and making the links.

Whilst their experience had been positive, Abrams and Swift highlighted some issues that need to be considered before entering into collaborations with external users:

• What do they want to get out of the relationship?
•  What do you want to get from it? Access to data? Or further opportunities?
•  Make sure you protect your intellectual property.
• Make sure that you get all necessary ethical approvals.
• What is the timeframe? Deadlines are often tighter than you may be used to.
• How will you deal with any conflict outcomes? In other words, what will you do if the research doesn’t tell the ‘story’ that the user was hoping for?
• How will you get the research into a ‘useable’ form? The user will probably want the findings in a more accessible and useable form than an academic article.
• What will happen if the research is not used? The organisation might be happy with your work, but the report may be shelved for political or other reasons. What will you do?
• What will happen after the report is written and the relationship is formally finished?
• Make sure you have more than one contact within the organisation. People move on, and you don’t want the relationship to dwindle when they do.

Above all, for both of these case studies, it was clear that good communication, openness and honesty were key. Expectations should be managed, and both sides need to be clear about what can and can’t be done.

Slides from the session will be available on the Research Services website shortly.