The Research Cycle

Ways that you can be involved throughout the research cycle

You can get involved in a whole range of research activities. These include helping to develop research questions, applying for funding and ethical approval, sitting on advisory groups, carrying out the research and disseminating the research findings. This section looks at the different ways you can get involved in the different stages of research.

If you want to get involved you should think about why you want to get involved and what sort of thing you would like to do. You should also think about how much time you have and any experience and skills you might have. You might just want to attend a meeting, for example for project advisory groups, public events, reference groups or workshops.  Or you might want to be involved in reviewing papers.

Patient data is also a feature of the research cycle, used by researchers to underpin their research and lead to improvements in health and care. 

You can find out more about ways that you can get involved and what sort of things you might be doing by following the links on this page underneath the diagram below.

 

Identifying and prioritising topics

Getting involved in helping to identify and prioritise research is a powerful way to be involved as it gives you the chance to influence what will be researched. It gives researchers the chance to check that their research priorities are the same as those of the people who have the condition that is being researched or who use the relevant services.

By working with researchers and patient groups you can help identify a number of research questions. This will give everyone a chance to learn from each other, agree on the research questions together, and the final topic should be a shared decision between the group. 

Researchers and research organisations use a range of different ways to work with the you to identify and prioritise research. These include:

  • discussions with existing reference groups and networks
  • inviting people to an event or holding a workshop or focus group
  • attending meetings held by service user groups
  • peer group interviews
  • surveys and interviews
  • asking organisations who support the public about the feedback they get from people who use services
  • using an independent facilitator (this reduces the risk of researchers influencing the agenda too much).

Sometimes it is difficult for people who are unfamiliar with research to identify research questions. so you might want to talk about some of the issues before the first meeting, before discussing how these might be turned into research questions.

Commissioning

Many funding organisations now involve members of the public in commissioning research. This gives a broader perspective to the review process, by considering the issues that are important from your perspective.

You can get involved in commissioning in a variety of ways, including:

  • reviewing research proposals
  • being a member of commissioning panels or boards
  • being part of the monitoring process of research, once funded
  • being part of a user controlled organisation which commissions research.

Designing and managing

Designing research

Getting involved in the design of research helps to ensure that the research is relevant to the needs of people like you and also that the research question and outcomes are clear. 

Benefits of public involvement in research grant applications

Involving you at this very early stage helps to build and strengthen the relevance, quality and the ethics of the research and can also help to improve recruitment to the research. Public involvement in the design stage of the research can: 

  • demonstrate to funders and commissioners that the topic is important and relevant to the end users of research and that they have been involved in the design of the research;
  • identify areas that might have ethical considerations and advise on solutions;
  • suggest ways that people can be meaningfully involved in the various stages of the research;
  • ensure that your recruitment process is practical and feasible;
  • help researchers develop a budget for public involvement and ensure that the time and the support needed for public involvement is built in to the research from the beginning;
  • suggest ways to ensure that diversity is addressed in the research;
  • help to develop written information in user friendly and plain language.

However, developing research grant applications can be a complex and lengthy process. You should consider how much of your time will be needed and that at the end of it all the research may still not get funded.

Managing research

One of the main ways that you can get involved in managing research is through membership of a study steering group or management committee.

Increasingly members of the public are taking a more active role in research as co-collaborators or in some cases as the principal investigators in studies. In these circumstances you will often be employed as a member of the research team.

Involving members of the public in managing research can help to ensure that:

  • a public perspective is maintained throughout an individual project or a programme of work;
  • public involvement in the project is properly budgeted and funded;
  • effective support is developed for members of the public involved in the study;
  • advice is available on improving the recruitment of participants to the study;
  • there is involvement in the selection process of staff and researchers for the study.

Undertaking

You can get involved in a variety of roles in carrying out the research such as: 

  • gathering and reviewing documentary evidence;
  • undertaking library-based research;
  • carrying out interviews;
  • running focus groups;
  • developing research tools and information;
  • analysing and interpreting the results of research.

Gathering and reviewing documentary evidence and undertaking library-based research

You can help by looking at different types of evidence and in interpreting the literature from a public perspective.

Example: A systematic review of research into sexual health promotion involved representatives from organisations providing services and campaigning on behalf of men who have sex with men in reviewing the literature. They were involved in recommending priority areas for study and in deciding which sexual health outcomes were to be prioritised in the review. (Rees and Oliver 2007)

Interviewing and running focus groups

You can get involved as peer interviewers (people who have direct experience of the topic being researched and who carry out interviews with other members of the public) or in helping to run focus groups. There should be training and support available for this role. 

In a project assessing the accommodation and health and social care needs of Gypsies and Travellers local gypsies and travellers were recruited as peer interviewers:

Disseminating

If you are involved in research you will want to ensure that the findings of the research are sent out as widely as possible so they can influence and change practice for the better. It has been found that involving people just at the dissemination stage is less successful if they have not been involved at earlier stages of the research as they do not have either the ownership or knowledge of the context of the research. However if you have been involved at other stages in the research you will be more likely to disseminate the results to your own networks and will be able to help summarise the research findings in clear user-friendly language and ensure that the information is accessible to a public audience.

 

Without doubt the participation of young people in presentations of the results to professionals brought home some of the findings and recommendations more powerfully than if they had been presented by the researcher alone.

(Petrie et al 2006 page 44)

Implementing

Public involvement in research can influence, support and add strength to the way research is taken into practice.

You can help to ensure that research will effect change and improvement in issues which concern people most and so can lead to new improved services and changes in practice. Members of the public involved in research are often passionate to ensure that action happens as a result of the research and are able to establish relationships with key agencies and policy makers.

Example: A multi-disciplinary research team (which included three service user researchers) carried out an action-research project focusing on the lived experience of detained patients in a psychiatric hospital. In-depth qualitative interviews were undertaken and a staff training package on therapeutic interventions was formulated using data from these interviews. The training was then implemented and evaluated, with positive results. As a result, this training in therapeutic interventions is now being given to a number of staff teams in a mental health trust, co-delivered by the nursing researcher and one of the service user researchers. (St George’s, University of London 2011)

Evaluating impact  

From the beginning of a research project researchers should think about how they are going to monitor and evaluate your involvement and the impact of public involvement throughout the project. This will help for future projects and provide valuable knowledge for other researchers looking to involve members of the public in their work.

You can help to build the evidence base and let others know about what worked well and what didn’t and the impact of public involvement in by: