Today, we're here with Jill Llyod to talk about her experience of being involved at Stage 4 of the research cycle, which is undertaking a research and analyzing the results. Thanks for being with us today Jill to share your experience. Could you tell me a bit about the project you worked on, where you acted as a co-researcher. Yes. I was involved in the IMPRESS study, which was a study around patients involvement with their medication. During this study, we looked at inpatients in two London hospitals with various long-term conditions like Parkinson's, HIV, lung disorders, etc, and looked at their involvement with their medication. When their medication was given to them by the nurses, and also when their medication was ordered by the doctors, and when their medication was discussed with them by the pharmacists. Can you tell me a little bit about what was involved in being a co-researcher in that study? Yes, we were involved in the study from the start. We were involved in the setup of the study, and the public members were also involved in gathering the information. So gathering the information involved observing patients, taking their medication on the ward. So we observed patients taking their medication, we observed doctors discussing medication with the patients, and we observed the pharmacists also discussing the medication with the patients, and the pharmacists may well have discussed with the nurses, and the doctors as well. So we were in there in a ward situation observing patients doing these things. We didn't react with the patients at all, we were just there as a super numeric person observing. Who else was on the research team apart from you. Well, there were two researchers who were both pharmacists, and there were four members of the public. There was a chair who also happened to be a pharmacist but she was in a sense an independent chair because she didn't do any of the research at all. The four members of the public, it was me and three others, one of the others happened to be a carer, which also brought another dimension to the project. Can you give us an example of the observations that the members of the public made that might have been different from the researchers when you are on the wards. Yes. The researchers also observed the members of the public, but they tended to look for other things. They tended to look for technical things, rather than the members of the public were unaware of the technicalities of giving medication, and so the members of the public looked for things like anxiety, disinterest with their drugs, indifference with their drugs, and things like that. So those were the other things that the public brought to the study, which in a sense helped to keep the study grounded, and produced a completely different dimension. Was there another stage that you assisted as a co-researcher? I understand there were interviews? Yes, there were interviews. The researcher interviewed some doctors, some nurses, some pharmacists, and the members of the public as well. So the members of the public were also involved in the analysis of these interviews. After the interviews were done, they were all transcribed into a readable format and the members of the public read the interviews, and pulled out themes. We tended to pull out very similar themes to the pharmacist, but we also pulled in other dimensions like lack of confidence, and anxiety, and after we had done this thematic analysis at home separately, we all then came to a meeting together to argue about the themes, discussed the themes, and provide a consensus opinion of what the theme should be. It sounds really interesting and were you given any training to be able to act as a co-researcher in this project. Yes, we were given training, and we were also given a lot of support, so in a sense we never felt alone. We always have the telephone number, the e-mail contact of the researcher, and whenever we e-mailed them, they would reply. In my personal experience, they replied within an hour. So we never felt alone, we felt completely well-supported. We were given instruction on how to behave in the hospital, which was relevant for people who had never been in a hospital before, naked from the elbows downwards, flat shoes, no jewelry for infection control and that stuff. We were also given instruction on how to do the thematic analysis, where we did several different subjects. We did thematic analysis amongst ourselves, and again had the discussion afterwards to come up with the themes, so that when it came to doing the real thing we knew exactly what we were up against. So training is essential. So the training was absolutely crucial. It helped to give us confidence. It also helped us to get together as a team to chart and helped us to feel supported. That wasn't the end of your involvement in this study, can you tell us a little bit more about how else you were involved after that. Yes. The study then developed particularly from the carers point of view. When the carer brought up that carers were never involved in giving the medication to the patient in hospital, but at home, the carer was absolutely crucial in terms of giving the medication or assisting with the medication. So the team then wrote another protocol and applied for more money in order to do a study relating to carers involvement with the patient's medication. Also we tried to change the way that carers are managed when their cared-for person is in hospital, and we changed the way that carers were treated so that carers were then able to go in and attend some ward rounds, so that they were more involved with their cared-for person was in hospital. Great, and was this some literature produced as a result of this study. Yes. After that, information was produced, posters were produced, and information leaflets were produced. A public member of the team also went to assist in the placement of the posters around one of the hospitals that was involved, and also we assisted in where the leaflets should be placed. These were mainly placed in outpatient clinics. So what advice would you give a researcher who was thinking about involving a member of the public or a patient as a co-researcher in a study. I would say do it. It brings a completely different dimension to the study. It's another voice to be heard. It helps a whole lot to the study, but it also helps to keep the study grounded, and it helps to keep the researchers on track. As I say, it produces a completely different dimension. Thanks so much Jill for offering your valuable insight and experience at Stage 4 of the research cycle. It has been a pleasure. I'm sure Jill's experience will help you think about how to involve members of the public and patients at the undertaking, and analyzing stage of the research cycle.
