People who share their stories on Care Opinion may have plenty of experience and expertise in how it feels to use health services. They may have ideas on how services could be better. And they may want to help in other ways, which go beyond posting feedback.
So, in keeping with our mission, we are developing a "research community" which will offer people another way to help health and care services learn and change.
What is the research community?
The research community will be a community of people who have shared stories of care on Care Opinion, and who are happy to receive invitations, via Care Opinion, to help academic research projects.
What does "help research projects" mean?
There are different ways people can help or support research. People often divide this into two types of helping:
1. Being a research participant: this means you are helping by being one of the people being studied. For example, you might be asked to fill in a survey or talk to a researcher on the phone.
2. Joining an involvement group: this means you are helping by sharing your views on what should be researched, or how a research study should be done. This is usually called "patient and public involvement" or PPI.
The research community will include both kinds of helping.
Who else is involved in this?
To develop the research community and share what we learn, we are working in partnership with the NHS and the Yorkshire and Humber Patient Safety Translational Research Centre (PSTRC), based at the University of Leeds.
What do other people think of this idea?
In 2019 we worked with the PSTRC to find out if people who had shared stories on Care Opinion thought this was a good idea. We emailed over 500 people and 163 people completed a survey.
The survey results showed that most people (over 90%) felt this was a good idea and would like to be involved if they were asked. People wanted to know that they could opt in or out when they wanted, and that they could choose what kinds of project they would help.
You can find more details of what people said in a recent blog by Professor Rebecca Lawton, director of the PSTRC.
How do I join or leave the research community?
Anyone who has shared a story on Care Opinion may join or leave the research community at any time. Once logged into Care Opinion, you can visit the Research Community page to join or leave.
We have designed an explicit consent process so that you can say what kinds of project you would support, how you would be prepared to take part, and how you can be "matched" to a project by Care Opinion.
What will happen after I join the community?
That will depend on the kind of research projects carried out by the PSTRC. When a researcher begins a new project which could be helped by Care Opinion authors, we will work with the PSTRC to clarify what kinds of people we should invite.
Then Care Opinion will use your stated preferences to decide whether to send you an invitation by email.
Will my personal data be shared with researchers?
No, we never share your personal data. Because invitations will be sent by Care Opinion, and not by anyone else, you remain unknown to the researchers until you decide to participate in a research project by connecting with the researchers.
What should I do if I receive an invitation to help a project?
The invitation email will include a small amount of information about the project, and a link to more detailed information. The researchers will explain the purpose of the research and the kind of involvement they need from you. You can decide whether the project interests you and whether you are able and willing to help. You are never under any obligation.
The email will explain how to say yes or no to the invitation. If you say yes, Care Opinion will connect you with the researchers by email. If you say no, we will not connect you.
If I reject an invitation, will the researchers know?
The researchers will not know who Care Opinion has invited, and who has said no.
How will Care Opinion ensure that research is ethical?
In the initial phase of this work, only projects from the PSTRC will be offered through Care Opinion. All projects will have undergone ethical review by either a University of Leeds or an NHS ethics committee.
How will I find out the results of research I help with?
We will ask all researchers using Care Opinion to share their results in a blog on Care Opinion when available. We will also ask that they email all research participants with a link to the results.
How can I learn about the progress of the research community?
Because this is innovative work, we will be learning as we go. We will share our progress on our blog and in academic research papers where appropriate.
If you agree, we will also email you occasionally with an update about the research community, so you can hear about progress.
To join the research community
1. Log in to Care Opinion. If you don't have a login already, you can create a new account.
2. Follow this link to the research community page.