What has our research community done in its first year?

In mid-2020 we started work on developing a Care Opinion research community, in partnership with researchers at the Yorkshire and Humber Patient Safety Translational Research Centre. Our idea was based on the assumption that people willing to post feedback to help improve healthcare might also be willing to take another step, to help with research relevant to their experience.

We began by emailing a small group of people who had shared a story in the previous few months, to see if they would like to help. About a quarter, nearly 200 people, signed up to the research community, and stated their preferences for how they might be prepared to participate. A good start!

Three projects supported by Care Opinion authors

Over the following 12 months this small but growing community has supported three different research projects run by researchers at the University of Leeds. As you might expect because of the pandemic, so far Care Opinion story authors have been helping remotely, through an online survey or an interview by phone or Zoom.

The first project was part of a study by Emily Parker, for her PhD. Emily wanted to find out "how people would prefer an emergency department doctor to manage their care, should the doctor be uncertain about the diagnosis". 128 research community members had preferences matching this study, so we emailed them and 49 contributed to the survey.

The second project was part of a national study about patient and family involvement in serious incident investigations in the NHS, led by Professor Jane O'Hara. The research teams wanted to speak with people who had experienced a serious incident like this. Eleven of our research community members were able to help out with the study, which is still ongoing.

The third project, run by Dr Helen Smith, senior research fellow at Yorkshire and Humber ARC, aimed to "understand the thoughts and feelings of older people (75+), or their caregivers, about being in hospital and the decisions made at the time of discharge". For this study it was hard to find members of the research community with the right experience, but in the end nine Care Opinion authors were able to help.

Next steps

The first year has shown that our initial idea of a Care Opinion research community is feasible. Even at this very early stage, it has been rewarding to see people participate in projects so readily.

Having taken these first tentative steps, we now want to take a few more. This will involve:

• inviting more feedback authors to join the research community

• inviting more researchers to try out our research community

• sorting out our processes so everyone knows what to do

• making sure the Care Opinion platform is easy to use and allows people to see how people are contributing to research.

If you have any comments or questions about this, please feel free to add a response to this blog post, or get in touch via our contact page or with me on Twitter.