Research Design – who me?
I’ve worked for Newcastle University in research support roles for nearly 25 years and have always been interested in health and social care research which inspires me to get involved whenever the opportunity arises. In my spare time I love playing badminton with colleagues at the Sports Hall and also enjoy singing with a choir after work who’ve took part in a few concerts around the Campus which were well received. But could I be involved in research design?
I know from my work in my University roles that researchers are keen to hear how members of the public think and feel about their research and their proposals to implement their findings within the wider community. They want to know whether what they want to do could be made better, safer, and/or more acceptable to the people who would take part in the research and be influenced by the findings.
Members of the public like me might like to be involved in designing the way that research will be carried out to make it easier for people to take part in studies and to make sure the research focuses on issues which are important, with the end results offering direct benefit to patients.
There is a move towards funding bodies which award money to research projects to actively encourage researchers to include the views of patients and public in their research. They want to see patients and members of the public represented all the way through the process, from identifying the research question, through informing the methods, to selecting the outcomes.
Patient and public involvement is a national initiative led by INVOLVE which is part of, and is funded by, the National Institute for Health Research to support active public involvement in the NHS, public health and social care research.
RDS NE consumer panel
The RDS NE launched consumer panels in January 2013 to help researchers to include the views of members of the public in their funding applications. The panel meetings are held once a month at both Durham and Newcastle Universities and are open to those researchers who request RDS help.
At the panel meetings researchers present their research ideas to panel members, who come from a wide variety of backgrounds, with specific questions that they would like feedback on. These questions could be about recruitment or retention of participants, how to conduct interviews and who should be involved, patient information sheets or dissemination of results to mention but a few. Panel members can also raise other issues that they think would improve the application. Individually, panel members are also asked to give online reviews of lay summaries.
How I became involved in the panel
While working as administrative support a few years ago I met the RDS Public Involvement Officer, who told me about his plan to set up the consumer panels. I was initially asked to type up minutes from meetings of the Consumer Panel steering group, who were brought together to design a model of how the panels would operate. Listening to the recordings of the meetings I became interested in joining the panel. My other job role at that time was as a research interviewer interviewing people 65+ in the community about their health states and so I felt I could draw on the experience I had gained from this and also be a voice for these people. I felt that I could have a say in the design of up and coming research that may benefit patients, carers and members of the public.
It was a very scary prospect at first speaking out in a group discussion with people I didn’t know and I didn’t know whether I could make a difference with my level of knowledge and experience of research but I completed an expression of interest form and submitted it to RDS NE. My application was accepted and I became a Consumer panel member.
Photo credit: Bronia Arnott, all rights reserved.
My experiences as a member of the panel
That was 3 years ago now and since then I have been an active member on the RDS NE Consumer panels giving feedback to researchers on just about every medical condition imaginable such as brain surgery, cancers, arthritis, depression, sleep disorders, gum disease and many more, which has been absolutely fascinating.
As a panel member you are acting as part of a team, discussing and bouncing ideas off one another which, when they come to fruition, become useful advice to the researchers. You can pull on your own experiences of health conditions or those of people you know or care for and give a view on the research from that perspective.
I have really enjoyed being a consumer panel member, it has challenged me mentally and emotionally as some of the research can be technical but is necessary to treat people with some very debilitating conditions and it has been completely worthwhile. I would encourage anyone to give it a try. I’ve learnt so much about research design on how a research idea to help patients or members of the public is formed and how with enough support and guidance it can become a full clinical trial getting the research out there in the community to make a difference.
Researchers who come to the RDS NE requiring advice on public involvement are referred on to our PI Lead Claire Whayman and the Consumer panel as appropriate. The RDS NE consumer panel is currently looking for new members so if you know anyone who might be interested please ask them to get in touch via email firstname.lastname@example.org.
This is a guest post by Pauline Winship, Consumer Panellist, Research Design Service North East