7: Increasing public involvement

Last updated on 30 Nov 2021

Involving the public can help researchers do better studies that everyone benefits from. We work in partnership with patients and the public to champion meaningful public involvement in research. We’re seeing an increase in the number of applications that meaningfully involve the public, but there is still work to do.

Scroll down to see how we champion meaningful public involvement in research.

Better research

In 2010, just 19% of HRA research applications had public input. By 2019, 74% of applications did so, which we know results in better research.

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'They’re very open, very helpful and always trying to get the best for patients.'

'I think the interest in lay involvement is genuine, it’s not just tick the box.'

Feedback gathered from public and professional HRA stakeholders in January 2015

Involving the public can help researchers do better studies that everyone benefits from

In 2016 we demonstrated the value of involving patients and the public in the early stages of designing a study

  • make research more relevant so that the results are more likely to improve people’s health and wellbeing
  • define what is likely to be acceptable to participants, particularly in controversial or sensitive research
  • make it easier to understand the research and its potential risks and benefits
  • improve the experience of taking part in research
  • tell everyone what happened

Encouraging more meaningful involvement of the public in research

By 2017, we could see a promising growth in researchers involving patients and the public in their studies, but they were not describing this in enough detail in their applications for our Research Ethics Committees to judge whether it had informed the design of the research, and whether future plans for involvement were meaningful. We wanted to change this. Our work included guidance to help researchers to meaningfully involve patients and the public, and support to include detail about this in their applications.

Championing public involvement in a pandemic

Public involvement: a diverse group of people including a wheelchair user and people of different ethnicity

Patient and public involvement was not resilient to the pressures of a pandemic, with only 20% of COVID-19 research applications involving patients and the public – a fall from around 80% in normal times. We led a collaborative effort to emphasise the importance of designing research with people with relevant lived experience and created the UK COVID-19 public involvement matching service – helping researchers access people to involve in their research.

Our UK COVID-19 public involvement matching service and strong leadership contributed to 85% of COVID-19 research applications involving members of the public.

COVID-19 research applications to the HRA involving the public rose from 22% in March-April 2020, to 85% by August 2020.

Meaningful Public Involvement is important, expected and possible

Public involvement in research is not yet the norm and it should be. We’re working with the NIHR to bring together regulators, sponsors and funders to affirm and amplify the importance of public involvement throughout the research cycle, with actions and guidance to support researchers with this.

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