The phrase ‘nothing about us, without us’ calls for people whose lives are to be most affected by something to have a say over what is done.
It speaks to the sense of fair play at the heart of arguments for stakeholder engagement or patient and public involvement (PPI) in research. PPI is seen as making moral sense because it helps researchers do studies in more open, democratic and accountable ways, which, in turn, helps to preserve public trust in research.
Many argue that PPI also makes practical sense by helping to improve the quality of research. This argument focuses on PPI’s potential to enhance the relevance and usefulness of research, to make clinical trial participation more attractive to patients, and to facilitate careful allocation of precious research resources.
The extent to which these practical benefits are achieved in practice awaits further evidence, although several leading funders believe PPI has considerable potential to improve research.
The importance of training in strengthening PPI
PPI is not particularly new but it has not been widely practiced until relatively recently. So, highly experienced as well as novice researchers need to learn about it.
For their part, patients can have a range of roles in clinical trials. Some of these roles require specialist knowledge about the research process. Other roles depend on patients drawing on their experience to notice, question and voice a myriad of things that could improve a trial from the perspective of patients – things that those who are immersed in research procedures could easily overlook.
Whatever their role in a clinical trial, training researchers and patients to enhance their PPI practice has the potential to strengthen how PPI is implemented, and ultimately benefit trials.
However, our current paper from EPIC, published today in Trials, raises questions about how to engage researchers and patients in such training. We conducted interviews of both academic researchers and patients involved in research to explore their opinions on PPI training.
… We were surprised to find considerable resistance to PPI training among both researchers and patients…
Resistance to PPI training
We were surprised to find considerable resistance to PPI training among both researchers and patients.
Most controversial of all was the idea of training patients to be PPI contributors. A prominent fear for both patients and researchers was that training would cultivate a researcher mindset in patients, leading to an inauthentic patient perspective.
Both groups thought that the capabilities of PPI contributors needed to match their roles within a trial, and researchers believed such a match was easier to achieve by selecting PPI contributors who already possessed the required capabilities rather than trying to train them.
There was less resistance to the idea of training researchers in PPI, but some informants from both groups thought that researchers would learn better ‘by doing PPI’ rather than through formal training. Several researchers wanted PPI training to be informed by strong evidence and thought that the PPI knowledge base was currently too flimsy.
… our informants’ concerns need to be taken seriously; addressing them will require imaginative and thoughtful solutions to make sure training is fit for purpose…
Making PPI training responsive to patients and researchers
These concerns are not insurmountable, nor do they mean that education or training for PPI should be abandoned. Nevertheless, our informants’ concerns need to be taken seriously; addressing them will require imaginative and thoughtful solutions to make sure training is fit for purpose.
Our findings point to the importance of ensuring that researchers and PPI contributors are helped to learn about PPI in ways that are responsive to their needs and roles. Instead of just focusing on PPI as requiring technical knowledge, training should address wider capabilities. This might include a focus on how to support dialogue between people with diverse perspectives, or how researchers and patients can work productively together whilst valuing their diversity of perspectives.
Our findings also indicate the need for a joined up approach to the training and selection of PPI contributors, so that clinical trials do not miss out on the opportunities that a diversity of patient perspectives can bring.