The South East Wales Trials Unit developed a research study related to the treatment of Chronic Obstructive Pulmonary Disease (COPD) – the question being asked was ‘does the result of a quick and safe finger prick blood test in the General Practitioners’ surgery help the doctor to decide whether the patient requires antibiotics for a flare up of their disease? The Trials Unit required two members of the public who suffer from COPD to join the Study Development Group.
Involving People is able to offer researchers advice on best practice in involving members of the public so that they are able to be actively involved throughout all stages of health and social care research, as well as providing them with information, support and training. Involving People has a network of members of the public throughout Wales who can share their knowledge and experience with researchers.
Working with the public
The Trials Unit approached Involving People to advertise the research opportunity to its members. Two members of the public were chosen from those who had applied. They were able to bring a different perspective to the study and quickly had an impact on its development, specifically the patient recruitment process and the study funding application.
From their own experience they knew that at the time of a COPD flare up, patients can feel uncomfortable and vulnerable and they suggested that this was not the best time to give them information about the study. The recruitment process within the study funding proposal was amended so that all potentially eligible patients would be sent information so that they could consider participation before they became unwell with a flare up of their COPD.
The study received funding and was successfully submitted for ethical review. One of the members of the public was invited to the ethics meeting where she was able to answer questions related to patients’ understanding and thoughts on the study procedures. The study manager said “who better to answer their questions than someone who understands more than anyone else on the study team what it feels like to live with COPD”.
The two Involving People members are now involved in the running of the study as members of the Study Steering Group. Jonathan Bidmead, one of the members, said:
“I have been involved in research projects in the past and I am well aware of the problems that not having a public representative can lead to. Now it is rare to come across research which does not have a public representative."
Margaret Barnard, the other Involving People network member, lived with COPD since 2003 and said:
“working for the good of others living with the same, or similar, condition as you, is a very positive thing to do. It not only makes you feel positive about yourself and the condition you are living with, but you are helping others be more proactive in the treatment of their condition.”