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Why involve the public/patients at this stage?

Considering that most projects are funded by public money, it's important that the public voice is able to inform what is researched. The experiential knowledge of patients, the public or those who use relevant services can inspire unexpected research questions, and allow researchers to check the priorities they have already identified are relevant to the people the research affects.

How your research could benefit

Involving patients or the public in identifying and prioritising research agendas can:

  • Help identify unmet needs and novel research areas or challenges
  • Align research focus closer to patient/public interest
  • Check your theories and ideas are clinically relevant
  • Increase likelihood of funding
  • Help maximise your 'pathway to impact' from the start of your project

How you could benefit

Involving the public in your work at the research agenda-setting stage can have a positive impact on you too:

  • Greater insight into patient or public opinion of your research proposal
  • Greater motivation and momentum to initiate research
  • Greater clarity and focus about the reasons for doing research
  • Opportunity to build public involvement experience early on in your research project and career
  • Reflect on your assumptions about patient/public knowledge and the impact of their involvement

Ways to involve the public at this stage

  • Connect with public/patient forums, e.g. join online discussions with existing reference groups/networks
  • Arrange informal meetings with existing public or patient reference groups and networks
  • Invite public/patient representatives to an event, conference or festival
  • Adopt a formal public involvement model for prioritising research agendas e.g. James Lind Alliance Priority Setting Partnership, The Dialogue Model, Delphi method
  • Co-create a new way of informing research priorities 

Here’s a mix of formal and informal methods and case studies for inspiration:

3 Column general content block - JLA-Dialogue-Delphi

James Lind Alliance Priority Setting Partnership

This initiative brings patients, carers and clinicians together to agree what the most important research questions are.

Find out more here.

Here’s an example project in alcohol-related disease.

The Dialogue Model

This is well-documented model of interaction and dialogue has six phases of design and has already helped formulate research agendas for several conditions.

Find out more here or watch this video.

Citizen Visions on Science, Technology & Innovation

The CIVISTI method uses citizens’ concerns about societal development as a stepping stone for developing and defining relevant and forward-looking research and agendas.

Find out more here.

In addition, there's the Delphi Method. This is a forecasting method based on the results of multiple rounds of questionnaires, which are sent to, and reviewed by, a panel of experts. See this case study for an example.

Published examples

Next steps

If you're interested in the benefits of public involvement at this stage, here's how to getting going:

Go to the next research stage - Funding and Commissioning - or use the navigation bar at the top to explore where else public involvement could help.