Hello, deprescribing world! Today we have four people involved in the CHARMER Research Programme – Katherine Murphy (Patient and Public Involvement and Media Lead), Doreen Pegg (Patient and Public Involvement Member), David Wright (Professor of Pharmacy Practice, University of East Anglia) and Caroline Smith (Research Associate, University of East Anglia) – talking about Patient & Public Involvement (PPI; no not the bad kind) in deprescribing research. Take it away!
The CHARMER Research Programme
Half of older patients in hospital are prescribed at least one medicine which does more harm than good. But such medications are rarely stopped before harm occurs. The CompreHensive geriAtRician-led Medication Review Research Programme, or CHARMER for short, aims to change the way medication reviews are delivered so that patients are more likely to have conversations about stopping medicines with their pharmacist or doctor while in hospital.
In the CHARMER study, four patient and public members have been fully involved throughout the project, from management and design of the research to supporting its running. Patient and public members have been central to the design of all materials which the team will use to present the results from the study to the outside world. We have ensured their voice has been listened to from the outset and there is a clear intent to involve them.
“My motivation is to give suggestive ideas… to improve the service in which there is a focus on remedying the way repetition of medications can be reviewed at every opportunity which will be of value to those who are not reviewed in their circumstances.”
– CHARMER PPI member
Below our patient and public members will describe their involvement in the project.
CHARMER’s PPI practice
Working on a national study is a task in itself, but a national study during the time of a global pandemic brings further challenges for all involved. The CHARMER team recognised the breadth of work we as PPI members faced and developed a package of support for us, which was reviewed and updated frequently:
1. We were introduced to the programme by the study lead who explained the approach to the research, the different parts, the tight timelines, the time commitment and what would be required of us as PPI members.
2. They arranged for the Project Manager for the Public & Patient Involvement in Research group (PPIRes – the local group whose role is to support patient and public engagement in research) to meet with us in order to give an introduction to the study and what will be required from us. The Project Manager is on hand to support us at every stage of the research.
3. The value of our input and views was seen to improve the quality of the research. Therefore, we were given the choice as to where we wanted to work on the study, ranging from; joining the media group; identifying the things that need to be measured as part of the study and; participating in workshops to develop what the change in service will look like.
4. The research team records all of our activities, so we can see what contribution we have made at every stage and think about how to improve it further.
5. From the outset, a training programme was developed for us, so that we were enabled to confidently participate in each part of the study.
“I was invited by CHARMER as a PPI member to work on Work Package 1 to carry out a survey on researching patients in hospitals and their experience before and after any changes in their medication while working with clinical staff and trust management.”
– CHARMER PPI member
The Importance of PPI
Patient and public involvement in research is an active partnership between us as the patients, carers and members of the public, and the researchers. This relationship can significantly influence the research. Therefore, it is important that we, as the patients, carers, and public, are involved at all stages of the research process. Our involvement must be meaningful, and our voices listened to, in order to have an impact on the research. To ensure that PPI is not just a tick box exercise, we require the appropriate knowledge and skills to enable us to effectively contribute and carry out our role. Training needs of PPI members should be identified and acknowledged to ensure we can provide meaningful input.
“Public and Patient Involvement has given me the opportunity to deliver and hopefully change methods in the quality of health for those who do not have a voice or choice when struggling to be heard in the changes of their medication.”
– CHARMER PPI member
The Future of PPI in Research
Researchers have a responsibility to ensure the workload is manageable for us as PPI members and to ensure our contribution is effective. Researchers should work in collaboration with patients and the public, as the value of patient experience and knowledge enhances the quality of the research. While the importance of PPI in research is undisputed, more needs to be done to spread the word and ensure that it is used throughout patient facing research. It is important to have the voice and views of patients, not just to take part in the study, but to be actively engaged in shaping its design. This can only be achieved if there is funding, support and training for the PPI members. We all accept that the right thing to do is to involve patients and carers when we’re looking at complex patient safety matters, like stopping medicines. It would be unthinkable and unethical not to involve PPI in healthcare research.